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Spinal Cord Injury Handbook

© Craig Hospital 3425 South Clarkson Street Englewood, Colorado 80113 © Craig Hospital

303-789-8000 www.craighospital.org


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Spinal Cord Injury Handbook Table of Contents Letter to Patient and Family......................................................................x-5 Treatment Philosophy and Patient Expectations..............................x-7

Healthy Living After Spinal Cord Injury Chapter

Section

 Introduction to Spinal Cord Injury........................................A  Bladder Management................................................................B  Bowel Management....................................................................C  Complications After SCI...........................................................D  Medications....................................................................................E  Nutrition..........................................................................................F  Pain Management........................................................................G  Range of Motion..........................................................................H  Respiratory......................................................................................I  Sexuality..........................................................................................J  Skin Care.........................................................................................K  Substance Abuse.........................................................................L

Assistive Technology and Equipment Chapter Section

 Equipment Patterns...................................................................N  Power Wheelchair Maintenance............................................O

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 Accessible Living and Home Modifications......................M

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Dear Craig Hospital Patient and Family, This Spinal Cord Injury Handbook has been produced to provide you with the basic information you will need to know about living with a spinal cord injury (SCI). This “nuts & bolts” book is about the physical changes related to this type of injury as well as some of the lifestyle issues you may be wondering about. Use this book as a reference and use it during your stay here at Craig Hospital and especially when you go home. The information in this book will help keep you healthy and living long. There will be many opportunities for learning during your time at Craig. I invite you to participate fully in all therapies, classes, recreation outings and free time. There is much to learn about a spinal cord injury (SCI) and it will be up to you to take advantage of all that Craig Hospital has to offer. Don’t be shy, if you are interested in something and have not found any information as yet, please let us know. Craig Hospital produces many educational videos that are available on our Video- On-Demand system. From your bed, you can access videos through your TV. DVD copies of these instructional videos will be given to you when you go home. Relaxation and good sleep are important for successful rehabilitation following any injury. On your television, the C.A.R.E. Channel© provides 24-hour programming with relaxing music and nature video. Use the C.A.R.E. Channel© to promote sleep and decrease hospital noise. Massage therapy, acupuncture and aromatherapy are also available to patients. Ask your nurse for more information. The Patient Education Area on 3East has Internet access computers and a printer available 24-7. Drop by and check your e-mail or search the Web. All patients may setup a personalized CAREPAGE for communicating with friends and family back home. Go to www. carepages.com for more information and set up instructions. Please contact me if you have any questions. © Craig Hospital

Bevin Peterson, MS, RN, CRRN Patient & Family Education Coordinator 303-789-8211 bpeterson@craighospital.org

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Treatment Philosophy and Patient Expectations Craig Hospital offers an individualized and comprehensive approach to spinal cord injury and traumatic brain injury rehabilitation. With a highly specialized and experienced staff, state-of-the-art facilities and equipment, proven treatment methods, a large group of patients with similar injuries, and a positive and caring attitude throughout the hospital, Craig offers a powerful community of hope and possibilities. The goal of rehabilitation is to maximize neurological recovery, functional abilities, and psychological adjustment, so that patients can return home as independent and productive as possible, prepared to resume their lives. Our rehabilitative philosophy is that our patients can return home and have a quality life. Thousands of our graduate patients over four decades have told us that this is true, and many of our graduates have done remarkable things with their lives following injury. In order for patients to get the most of their rehabilitation program, it is necessary for patients to work very hard. Therefore, we set high expectations for patient participation. Patients need to understand that rehabilitation is different from the ICU medical model where patients are passive recipients of care. In contrast, rehabilitation is a process to teach patients and fami- lies to care for themselves. Patients are encouraged to have input into their programs and schedules, but it is expected that patients will follow physician and treatment orders, adhere to treatment schedules, comply with educational goals, participate in outings, and take full advantage of all the resources Craig has to offer. Expectations also include that most patients will be up each morning M-F by 8:00 AM, have breakfast in the cafeteria, and be ready to begin daily activities by 9:00 AM. Unless patients are sick, they are expected to take meals outside of their rooms. If medically reasonable, patients are encouraged to stay up throughout the day, to interact with and learn from other patients and families.

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Craig will honor patient rights and will attempt to accommodate individual requests and belief systems. We are passionate in our mission to improve the quality of lives for our patients. If patients engage in behavior that we believe is contradictory to their health or to successful rehabilitation (persistent non-compliance with nursing routines, refusal of therapy, medication refusal, staff abuse, drug or alcohol use, etc.), we would make reasonable attempts to provide counseling and education to help patients understand the value of the treatment we are recommending. If unsuccessful, patients will be informed of the potential consequences of their noncompliance, including early x-7


discharge. We believe that enabling patients to make healthy choices is in their best interest and in the best interest of other patients and the hospital. During the rehabilitation process we also inform our patients as to what clinical research trials are available at Craig and also about what experimental studies and therapies are occurring around the world. New treatments will be introduced into Craig’s programs as research outcomes dictate. At the same time, we want newly injured patients and families to understand that experimental research and therapies should not replace comprehensive initial rehabilitation by a specialized center. Many patients have limited rehabilitation insurance benefits, and it is important that patients use these benefits wisely to maximize their initial recovery and functional independence, and have a solid foundation with which to face the future.

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Latest revision 11/2016 Source: Craig Hospital Admissions Packet

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Introduction to Spinal Cord Injury

 Spinal Cord Injury: A Brief Explanation......................................3  Structures of the Nervous System................................................3  How the Nervous System Works..................................................4  The Spinal Column ............................................................................4  ASIA Impairment Scale.....................................................................6  Complete/Incomplete Injuries........................................................7  The Autonomic Nervous System...................................................7  What Happens After Spinal Cord Injury.....................................8  Reflexes...................................................................................................8  Summary.................................................................................................9  Resources...............................................................................................9

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Spinal Cord Injury: A Brief Explanation You have sustained an injury to your central nervous system. This system has two major divisions: the brain and the spinal cord. In your case, the damage has been done to your spinal cord. The purpose of this section is to provide you with a brie explanation of the spinal cord and its functions and to explain what happens when the cord is damaged.

Spinal cord injury effects each individual differently because the cord is usually not damaged in the same way. Your team members will provide you with the specific information relating to your specific injury, and this section will provide you with a general background on spinal cord injury.

Structures of the Nervous System

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Dorsal (back)

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The spinal cord is an extension of the brain. It is a bundle of nerve fibers and cells from which spina1 nerves arise to connect your brain with your muscles,skin and internal organs. Operating much like a telegraph line, it is a transmitter of two-way communication between the brain and body parts. From the spinal cord, 31 pairs of spinal nerves branch out to all Brain parts of the body at various levels. From the upper part of the cord, some of these nerves branch and rebranch, leading to the upper Spinal Nerves Spinal Cord torso, arms and hands. From the Peripheral lower part of the cord, other Nerves nerves branch and rebranch, leading to the pelvis, thighs, calves and feet. These 31 pairs of spinal nerves act as the major pathways leading to and from the spinal cord. Branching and dividing ever further from the spinal cord are the peripheral nerves that reach every millimeter of your skin surface, every muscle every blood vessel, every bone, every part of your body from your head to your toes.

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How the Nervous System Works

The nerve impulses for muscle movement begin in the brain and travel down through the spinal cord to the spinal nerves and out the spinal nerves to the muscles (the motor pathway). When that pathway is interrupted by spinal cord injury, the result is paralysis, the inability to move a muscle. Sensation or feeling occurs when impulses travel from the skin or organs through the spinal nerves and travel up through the spinal cord to the brain (the sensory pathway). Spinal cord injury also interrupts these messages, resulting in a lack of sensation.

The Spinal Column

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The spinal cord is protected by bony structures called vertebrae - more commonly known as the "backbone". These vertebrae form a curve held together by muscles and tough, fibrous tissue. The spinal canal runs through the center of the vertebrae and the spinal cord is in this canal.

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There are four major divisions of the spinal column: 1. cervical region, or neck; 2. thoracic region, or chest and upper back; 3. lumbar region, or lower back; and, 4. sacral region or tailbone.

The cervical region contains the first seven vertebrae (C1 through C7) and the first eight spinal nerves. The thoracic region is composed of the next 12 vertebrae (T1 through T12) and the next 12 spinal nerves. The next five vertebrae (L1 through L5) and spinal nerves make up the lumbar region. The last section of the spinal column is the sacrum (S1 through S5) and coccyx. In this section, nine vertebrae fuse into two separate bone structures before adulthood. This area contains six spinal nerves. The brain and spinal cord are pictured to the right. The bony parts of the spinal column, vertebrae, are shown in black. The nervous tissue is shown in shades of gray. Spinal nerves exit the spinal canal between the vertebrae. Because the spinal cord is shorter than the bony spine, spinal nerves exit below their spinal cord segments. The spinal cord ends at approximately L-1. The spinal nerves that exit below L-1 are called the cauda equina.

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If the spinal cord injury occurs in the cervical region, the diagnosis is Tetraplegia (Quadriplegia), or weakness of all four extremities. If the injury occurs in the other regions, the diagnosis is Paraplegia, or weakness of the two lower extremities.

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Your SCI diagnosis is based on the level of the neurologic injury and refers to spinal nerves that still have function. You also have a diagnosis on the level of the spinal fracture. The numbered level of your fracture may be slightly different from the numbered level of your neurologic injury depending on the extent of the spinal cord injury. If the spinal cord injury occurs in the cervical region, the diagnosis is Tetraplegia (Quadriplegia), or weakness of all four extremities. If the injury occurs in the other regions, the diagnosis is Paraplegia, or weakness of the two lower extremities.

Your SCI diagnosis is based on the level of the neurologic injury and refers to spinal nerves that still have function. You also have a diagnosis on the level of the spinal fracture. The numbered level of your fracture may be slightly different from the numbered level of your neurologic injury depending on the extent of the spinal cord injury.

ASIA Impairment Scale (AIS)

The following definitions are used in grading the degree of impairment resulting from a spinal cord injury:

A = Complete. No sensory or motor function is preserved in the sacral segments S4-S5. B = Incomplete. Sensory but not motor function is preserved below the neurological level and includes the sacral segments S4-S5. C = Incomplete. Motor function is preserved below the neurological level and more than half of key muscles below the neurological level have a muscle grade less than 3 (Grades 0 through 2). D = Incomplete. Motor function is preserved below the neurological level, and at least half of key muscles below the neurological level have a muscle grade greater than or equal to 3. E = Normal. Sensory and motor functions are normal.

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Note: To receive the grade of C or D, the individual must be incomplete, that is to have sensory or motor function in the sacral segments S4-S5. In addition, the individual must have either (1) voluntary anal sphincter contraction or (2) sparing of motor function more than three levels below the motor level.

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Complete/Incomplete Injuries and the Zone of Partial Preservation

A complete injury is defined as the absence of sensory and motor function in the lowest sacral segment.

An incomplete injury is defined as a partial preservation of sensory and/ or motor function in the lowest sacral segment (S4-5). Sacral sensation includes sensation at the anus as well as deep anal sensation. The test of motor function is the presence of voluntary contraction of the external anal sphincter upon digital examination.

The zone of partial preservation (ZPP) is used only with complete injuries, and refers to those dermatomes and myotomes at or below the neurological level that remain partially innervated.

The Autonomic Nervous System

Besides the parts of the nervous system that control voluntary movement, the body has another system of nervous tissue that controls the automatic functions of internal organs and glands. This is known as the autonomic nervous system. This system operates day and night without any awareness or conscious control on your part.

There are two divisions of the autonomic nervous system: the sympathetic and the parasympathetic. The sympathetic and parasympathetic nervous systems regulate involuntary functions and, while they generally have opposing effects, they normally balance each other. One system predominates in certain situations and the other system predominates in other situations, depending on the body's needs. The sympathetic nervous system supplies energy for sudden responses, such as the reactions of fight, flight or fear. When you confront situations warranting a response, your sympathetic nervous system prepares you for immediate action: your blood pressure goes up, your heart beats faster and your pupils get larger. In this way the sympathetic system alerts and readies your body for upcoming reactions. The parasympathetic nervous system supplies a slowing down action. It keeps your body on an "even keel," preventing it from becoming over excited and enabling it to function properly at all times. Under the influence of the parasympathetic system, the blood pressure lowers, the heart beats more slowly, and the size of the pupils decreases.

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What Happens After Spinal Cord Injury

The spinal cord can be injured at any point along its entire length (usually by a broken bone of the vertebrae or dislocation of the vertebrae). Generally, the higher the point of injury, the greater the loss of function. The parts and functions of the body located above the point of injury will continue to function unimpaired.

The parts and functions that are below the point of injury, however, cannot function in their normal way. Messages from below the level of injury are blocked by the damage to the spinal cord and can no longer reach the brain for an appropriate response.

Spinal cord injury also interrupts the autonomic nervous system, and the brain can no longer regulate the functions of this system. This can result in changes in blood pressure, the body's temperature control, the functioning of the digestive tract, sexual organs, and bladder and bowel system function.

As we said earlier, the parasympathetic and sympathetic nervous systems are normally in complete balance. However, when a spinal cord injury occurs, the brain can no longer maintain the balance because of the interruption of the lower parasympathetic system and some portion of the sympathetic system or in quadriplegia, the entire sympathetic system. This interruption of the autonomic nervous system has more serious implications for the tetraplegic and can cause episodes of Autonomic Dysreflexia (AD). (See Section D, Complications after Spinal Cord Injury).

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Reflexes

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Some messages do not need to go to the brain to initiate an action. This is known as a reflex. The spinal cord has natural reflex functions that are influenced by the brain but do not require brain control.

Most spinal cord injury patients have a healthy, functioning spinal cord below the level of injury. Before the injury, the brain regulated these automatic spinal cord functions, but an effect of spinal cord injury is the loss of brain influence over these functions. The brain can no longer modify and regulate these reflex actions because they are exaggerated, causing spasms. In other words, these previously normal reflex actions increase and are exaggerated.


Summary

In spinal cord injury, the loss of function that occurs below the level of injury may result in any or all of the following:

 Paralysis of the skeletal muscles

 Loss of sensation, i.e., sense of touch, pain, temperature, position, vibration and deep pressure  Changes in breathing patterns and capacity  Abnormal function of the autonomic nervous system that may affect pulse, blood pressure, body temperature, the ability to sweat, bladder and bowel function, glandular secretions and sexual function Each SCI is unique and depends on the extent of damage to the spinal nerves. Ongoing testing and monitoring of your function will determine level of injury and whether the injury is complete or incomplete.

Resources Educational Videos n Understanding Spinal Cord Injury Brochures available from the Craig Hospital Research Department n Incomplete SCI: The Early Days n Incomplete SCI: Down the Road n Optimal Health n Quality of Life: What’s Important n Understanding Research I: Finding the Information You Need n Understanding Research II: Medical and Research Articles n Understanding Research III: Those Scary Statistics Organizations Christopher and Dana Reeve Paralysis Resource Center 1-800-593-7309 www.paralysis.org www.crpf.org National Council on Independent Living 1-877-525-3400 www.ncil.org © Craig Hospital

North Carolina State, Center for Universal Design www.design.ncsu.edu Miami Project to Cure Paralysis 1-305-243-6001 or 1-800-STANDUP www.miamiproject.miami.edu

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Bladder Management

 The Urinary Tract.................................................................................3 n How the Urinary System Works n Structure and Function  How the Urinary System Works after Spinal Cord Injury....5 n Physical Changes n Spastic or Reflexive Bladder n Flaccid Bladder n Emotional and Social Issues  Urinary Tract Evaluation...................................................................6 n Cystoscopy n Urodynamics Test  Health Goals of Urinary Tract Management.............................7

 Bladder Management Options.......................................................8 n Intermittent Catheterization Program (ICP) n Indwelling Catheters w Urethral w Suprapubic n Reflex Voiding n Timed Voiding Program

 Potential Complications Problems..............................................12 n Urinary Tract Infection n Bladder or Kidney Stones n Reflux

 Essentials of Suprapubic Catheter Care...................................14 n Daily Care Routine n Weekly Care n Monthly Care-Changing the Suprapubic Catheter Procedure

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 Essentials of the Indwelling Urethral Catheter Care (Male & Female)..................................................................................18 n Daily Care Routine n Weekly Care n Monthly Care-Changing the Indwelling Urethral Catheter Procedure

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How the Urinary System Works

The kidneys remove waste products and excess water from the blood stream and process them into urine. Urine then flows down the ureters (which are small tubes connecting kidneys and bladder) to the bladder. The bladder is the muscular balloon-shaped organ that stretches holding urine until a person is ready to urinate or void. When voiding occurs, the bladder muscle contracts or squeezes and the sphincter muscle relaxes thus allowing the urine to pass.

Urination is a finely coordinated balance of bladder and sphincter muscles relying on the nervous system for control. This coordination involves both voluntary and involuntary (or automatic) control by the nervous system. When the bladder begins to collect urine, a message is sent to the brain from bladder reflex center (S2-4) to let you know that your bladder is beginning to fill and you may need to urinate. At this time, you can decide if you want to urinate now or hold it until later. This part is under voluntary control. If you want to urinate or void, the brain will send nerve impulses back to the urinary system, your sphincter muscle relaxes, and the bladder contracts When you have any impairment to your nervous system, you can lose the voluntary component of your urinary system. This chapter helps you understand the options of managing your bladder after spinal cord injury.

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The Urinary Tract Structure and Function The kidneys are two bean-shaped organs located just above the waist at the back of the body. The kidneys perform filtering and cleansing of all the blood and other fluids in our body. They are not simply filters, but are organs able to remove toxic wastes from the blood and regulate the water volume and chemicals in the body. In this blood- filtering process, the kidneys use fluid and waste products to form urine. The ureters are tubes through which the urine leaves the kidneys and travels to the bladder. The ureters enter the bladder through the muscle wall, creating the ureterovesical junction or a one-way valve between the ureter and the bladder. Under normal conditions, this pressure-sensitive valve prevents urine from flowing backward from the bladder to the kidneys, thus preventing kidney damage. The backward flow of urine from the bladder to the kidneys is called reflux. Reflux can occur when the pressures in your bladder become high. The bladder is located in the pelvis and is made up of layers of muscle. It stores and empties urine.

The bladder sphincter muscle is located at the base of the bladder. This muscle can tighten to prevent the passage of urine or can relax and open, allowing urine to flow out of the bladder. It also provides voluntary control of voiding.

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The urethra is the channel through which urine is passed from the bladder to out-side the body. The urethra contains two sphincter muscles which are involved in the opening and closing of the urethral opening.

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How the Urinary System Works after SCI Physical Changes Nerve impulses from the bladder to the brain have been affected by the spinal cord injury (SCI). The SCI can affect the sensation of urine in the bladder as well as control of the emptying of the urine from the bladder. Even with some sensation sparing, you may not be able to tell if you are fully emptying your bladder. Basically there two ways bladder function can be affected by a SCI, where your injury is located and the extent of the damage to the spinal cord. A neurogenic bladder is essentially a bladder that has been affected by a spinal cord injury and does not function as a normal bladder. Because there can be individual variations, you will want to talk with your doctor about your level of injury and how it has affected your bladder function.

A spastic or reflex bladder is present when the level of injury is at or above the T 12 level of the spinal cord. With this condition, the bladder tends to hold smaller volumes of urine than before SCI. Just like other muscles in your body may have spasms and contract on their own, so can the bladder muscle. The result is more frequent, smaller amounts of urine. This neurogenic bladder type is common in most spinal cord injuries above the sacral level. There are medications available to help control the bladder spasms. If you are experiencing urinary leaking, notify your physician. A medication may be indicated.

A flaccid bladder is present when the injury is at or below the T-12 level of the spinal cord. With this condition, the bladder muscle has lost the ability to contract and can be easily stretched. Therefore, large volumes of urine can be held by the bladder. Because the bladder does not contract, urine will leave the bladder only when it is overfilled or distended. This neurogenic bladder type is common when the SCI affects the sacral level of the cord, also called cauda equina injuries. Your sphincter can also be affected at or below T-12 which can cause urinary leaking. Notify our physician if you are experiencing urinary leaking. Further testing may be required.

Emotional and Social Issues Changes in your bladder function after a spinal cord injury can often cause emotional reactions. Your body does not function the way it did before your spinal cord injury and you may be experiencing a sense of loss of control. Regaining control of bodily function emphasizes the importance of making well-informed choices about methods of bladder drainage and maintaining healthy behaviors. Attention is now given to a very private personal activity that used to be automatic and did not require much thought or planning. Your health care team will help you learn the proper techniques and ways of handling equipment so that you are in charge once again. B5 Š

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It's important to remember that one of the main goals of rehabilitation is to help people return to daily life. It is possible to live a full life including work, school and social activities. Learning how to care for your urinary tract needs and equipment will help you get back out to life and living.

Urinary Tract Evaluation

A very important part of your program at Craig is a urinary tract evaluation, which will be done when you are first admitted to the hospital. Your Doctor will want to find out the current condition of your bladder and kidneys. He or she will probably order some tests to be done during your stay in the hospital. On the advice of your physician, you may be given these tests again during your periodic re-evaluations.

Cystoscopy A cystoscopy is a visual exam of the inside of your bladder. This test is done by an urologist, a doctor who specializes in the care and treatment of the bladder and kidneys. The urologist inserts a cystoscope, a flexible scope approximately the same size as a catheter, into your bladder. The cystoscope has a lens and a light system so the inside of the bladder can be seen. A cystoscopy is not a treatment for a disease or injury, but helps you and your doctor plan for proper bladder management. This test is routinely completed after a spinal cord injury.

Urodynamics Test Urodynamics testing determines what ability a neurogenic bladder has to store and empty urine. These tests focus on the bladder’s ability to store and empty urine. Urodynamic testing may be recommended if the follow problems are noted; urinary leaking, frequent urination, painful urination, sudden strong urge to urinate, problems starting urine stream, problems with completely emptying your bladder, or recurrent urinary tract infections (UTI’s). This test typically takes about 30 minutes to complete.

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 Cystometrogram (CMG): shows how much the bladder can hold, the pressure inside your bladder, and how full it is when the urge to urinate begins. This is monitored with a small catheter in the bladder and a sensor (small balloon) in the rectum.

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 Electromyogram (EMG): uses electrode pad externally to measure the electrical activity of the sphincter and pelvic floor. Sensors are placed near the rectum.  Leak Point Pressure: is measured during the cystometrogram while the bladder is being filled. This reading may provide information about the kind of bladder problem that exists.


 Pressure Flow Study: measures the pressure required to urinate and the flow rate a given pressure generates.  Uroflowmetry: measures how strong the urine stream is. (This is done if the patient can stand or sit and urinate into a toilet).

Urodynamic testing is not for treatment of disease or injury, but intended to help in diagnosis and planning of bladder management. Your doctor and nurses will notify you when those tests are scheduled and will answer any questions about them at that time.

Health Goals of Urinary Tract Management The primary health goals of urinary tract management after a spinal cord injury are:  To have low bladder volumes n Bladder volumes are kept low by watching fluid intake and making sure your bladder is emptied routinely. A typical bladder capacity is about 500cc or just over 16 ounces. High volumes can lead to increased bladder pressure.  To have low bladder pressures n By keeping bladder pressures low, you can prevent urine from backing up into the kidneys. This is important to maintaining kidney and bladder function. Backflow to the kidney can cause kidney damage. Bladder medications may assist with keeping bladder pressures low.  To avoid bladder infections n Bladder infections can be avoided by following the guidelines of proper fluid intake, good hand washing technique and proper cleaning of all urinary supplies.  To keep your skin clean and dry n You should not be leaking urine. Talk to your doctor and nursing staff to make a plan that will help you stay dry and avoid worries related to incontinence (leaking of urine).

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To manage your bladder function in the simplest, safest possible way… There are several methods or options of urinary tract management used at Craig Hospital. These methods are based on the fact that you have lost control over the storage and emptying functions of the bladder. The options for bladder management will be based on the level of your spinal cord injury, your overall health, and your lifestyle.

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Bladder Management Options

Your health care team consists of you, your doctor, nurses and therapists. All team members need to be very concerned about helping you maintain healthy bladder function. In the early days of SCI rehabilitation, many people with SCI suffered kidney and bladder problems, some resulting in death due to poor bladder management. So it is vitally important that you follow the guidelines of healthy bladder management. Healthy bladder management starts with making an informed decision regarding the type of bladder option that will help you maintain the goals of healthy bladder management. Your doctor and nurses will begin discussing these bladder options once you are medically stable and involved in an active rehabilitation program. The types of bladder management options used most often at Craig Hospital are:

 Spontaneous Voiding n Intermittent catheterization program (ICP) n Mitrofanoff  Indwelling Catheters n Urethral n Suprapubic  Reflex Voiding Program

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Details on each of the options follow: Intermittent Catheterization Program (ICP) Intermittent catheterization program (ICP) is the periodic or intermittent emptying of the bladder by inserting a catheter or tube in through the urethra into the bladder. Urine will flow through the catheter and empty the bladder. This procedure must done on regular schedule. Usually every 4-6 hours is recommended, and the person may need to watch how much they drink so as not to overfill the bladder. A person with a spinal cord injury can do this procedure for themselves if they can remove clothing, position themselves and handle the catheter properly. If a person cannot perform these activities, then an attendant or family member will have to help. See the list of Pros (Good things) and Cons (Not so good things) and always discuss your bladder management option with your doctor and nurses.


Indwelling Catheters There are two types of indwelling catheters. A urethral catheter slides into the bladder through the urethral opening and into the bladder. Urine then drains from the bladder through the catheter tubing and into a leg bag or night bag.

A suprapubic catheter is placed in the bladder through a small, surgical ostomy or opening in the lower abdomen just above the pubic bone. Urine then drains from the bladder through the catheter tubing and into a leg bag or night bag.

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Indwelling Catheter (Urethral or Suprapubic) When a catheter is inserted into the bladder and left there for continuous drainage, it is called an indwelling catheter. This type of catheter is kept in place by inflating a small balloon on the end of the catheter once the catheter has entered the bladder. The indwelling catheter will be connected to either a small leg bag for during the day or a larger bag at night; this allows for continuous drainage at all times. A person using an indwelling catheter will have to empty the leg bag periodically throughout the day and be sure the catheter tubing is not kinked or bent, stopping urine flow. Indwelling catheters must be changed on a monthly basis using a sterile technique. Family members and other care attendants will be taught how to properly care for and change the catheter.

Mitrofanoff: continent urinary diversion to allow patients to perform intermittent catheterization easier via a stoma in abdominal wall. The appendix or segment of the small intestine is connected to the bladder and a channel is then brought to the abdominal wall (ideally at the umbilicus or in the right lower quadrant of the abdomen). This allows for easier access when catheterizing. Urodynamic study is required prior to surgery. You need to have enough hand function to hold and advance a catheter. This option can be considered one year post injury. An appointment with a urologist his required to discuss this option.


Reflex Voiding Program (with External Collector) Reflex voiding is a way for the bladder to empty using a spontaneous, uncontrolled contraction or reflex of the bladder muscle. Your doctor will order some tests to see if your bladder is capable of emptying this way. For this method to be successful, the bladder must empty almost all urine, leaving no more than 75cc. Sometimes reflex voiding is not very well controlled, and may lead to autonomic dysreflexia. A person could lose control of the urine and become wet as a result. For men, there are external collectors or condom catheters available. These external collectors fit over the penis like a condom and are attached to tubing and a drainage bag to collect urine, thus avoiding embarrassing situations. There are no such external collectors available for women except for incontinence pads. These pads may not hold all the urine expelled and could possibly cause skin irritation. Therefore reflex voiding may not be an option.

Spontaneous Voiding: There are some people with spinal cord injury who have been able to regain partial feeling and some control of their bladder function. Spontaneous voiding occurs when one can feel when the bladder is full, can hold urine until ready to expel the urine, and fully B 11 empty bladder without straining.

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How much function your bladder regains will ultimately depend on the level and extent of your spinal cord injury. This recovery can take a very long time.

Potential Problems of the Urinary Tract System Urinary Tract Infection (UTI): A bacterial infection of the bladder or other part of the urinary tract. Signs of a urinary tract infection (UTI):  Fever and chills  Increased spasms (bladder or general spasticity)  Fatigue, low energy  Leaking urine unexpectedly  Leaking around Foley catheter (due to bladder hyperactivity and irritability)  Cloudy urine  Foul-smelling urine (Dark cloudy urine with sediment alone are no signs of a UTI). These could be signs of dehydration. Often increasing your water intake will reduce or eliminate these symptoms.

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Causes:  Not drinking adequate fluids. Water is the best fluid for your body and bladder.  Poor perineal (groin area) hygiene  Poor technique for the intermittent catheterization program (ICP)  Poor washing technique prior to bladder care  Not staying on schedule for intermittent catheterization program (ICP)  Not emptying your bladder fully  Not changing your indwelling catheter on time (minimum of every 4 weeks).

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Prevention:  Drink fluids . Fluids help keep urine dilute, thus flushing bacteria out. Goal is for light yellow to clear urine.  Be sure to wash hands and urethral area before and after catheterization  Maintain proper techniques for ICP and indwelling catheters  Clean urine drainage bags every time you switch your urine bags with a chlorine bleach and water solution  Consider cranberry tablets. Cranberry juice just adds calories. There is not enough cranberry in the juice to affect your bladder. Cranberry tablets can be obtained over the counter. Check with our Physician before starting them. Cranberry has anti-adhesion properties and antioxidants, which can prevent bacteria from adhering to your bladder wall.


Bladder Stones: Bladder stones can cause serious problems. Stones that form in the bladder can cause irritation of the bladder wall and increase risk of infection. Bladder stones also harbor bacteria which can lead to re-current urinary tract infections. Bladder stones often occur when urine stagnates (sits around) in the bladder or in the presence of a foreign object, such as an indwelling catheter. Bladder stones may plug the catheter preventing the bladder from draining properly. Signs:  Re-current urinary tract infections  Urine leakage (incontinence)  Blood in your urine  Abnormally dark-colored urine  Autonomic Dysreflexia (T6 and above) Causes:  Bladder does not empty completely  Not drinking adequate amount of fluid  Not doing ICP on time  Indwelling urinary catheters Prevention:  Have a yearly urinary tract examination  Do intermittent catheterization on time  Change indwelling catheters on time (every 4 weeks).  Clean groin area and insertion site of indwelling catheter twice daily with soap and water  Drink plenty of fluids (until urine is light yellow to clear)  Avoid dehydration  Avoid high mineral content fluids: Certain bottled waters and other liquids contain extra minerals. For example: “Mineral” or “Spring” water, as well as water from softeners also contain minerals. Drink distilled water instead  Carbonated drinks also known as soda pop have many minerals which can contribute to bladder stone formation  Nutritional supplements such as Ensure are rich in minerals  Gatorade, PowerAde or other “sports” drinks may increase the risk of bladder stones

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Reflux: Reflux is the back flow of urine into the ureters and the kidneys. Reflux can be caused by an overfilled bladder due to a pinched or blocked catheter or by not emptying the bladder on time.

Signs:  Frequent urinary tract infections with fever  Tender or uncomfortable feeling of the bladder or lower abdominal area or lower back area B 13


 Sometimes there are no signs or symptoms. An annual kidney ultrasound is recommended to evaluate for reflux Cause:  Not emptying bladder on time  Increased pressure in the bladder due to a clogged or kinked catheter  Bladder outlet obstruction, meaning the bladder is not emptying freely Prevention:  Do intermittent catheterization on time and consistently  Check catheter tubing for kinking or clogging  Have a yearly urinary tract examination

Essentials of Catheter Care: Suprapubic Catheter

Daily Care

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Craig Hospital

Morning Care Routine  Hygiene: Cleaning around the suprapubic opening where the catheter enters your body must be done with soap and water. Dry the area with a clean towel before you dress. If your Doctor has requested that you use a specific cream or medication around the opening, apply a small amount of the cream now.  Catheter Check: Roll the catheter between your fingers to check for grit or build-up. If you feel any build-up that may lead to or is clogging your catheter, prepare to change your catheter immediately.  Change Night Bag to Leg or your daytime Bag: Disconnect catheter tubing from night bag and re-connect to leg bag. Remember to use an alcohol swab to clean connectors before attaching.  Rinse and Clean Night Bag: Empty urine out of night bag into toilet. Rinse night bag with a water and bleach solution. Mix 1 part bleach to 10 parts water for a good disinfecting solution. Hang night bag open to air dry.  Check Catheter Tubing: Once you have transferred to your wheelchair for the day, be sure to check catheter tubing for any kinking or bending that may have occurred during the transfer. This is important, as you want your urine draining freely into the leg bag.

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During the Day  Every Hour: Check your leg bag for fullness. You may tend to drain more urine in the morning, especially after your morning coffee or other fluids. You also want to look at the color and clarity of your urine. Remember, if it is dark or cloudy you probably need to drink more clear fluids, like water.  Medications: Throughout the day, take your prescribed medications. It is important to stay on a regular schedule. If you notice you are


about to run out of a medication, especially if it is one that you are taking long- term, be sure to call your pharmacy and refill your prescription.  Check Catheter Tubing: If you do any transfers in or out of your wheelchair during the day, remember to check the tubing and catheter for kinking or bending. Remember, you want your urine draining freely at all times into your leg bag.  Drink Up: All through the day, you need to be drinking plenty of fluids, especially water. The Craig Hospital physicians recommend that people with an indwelling catheter drink at least 3000 cc's or 1000 ounces of fluids, preferably water, each day. This fluid intake helps flush out bacteria or germs that find their way into the bladder. By drinking plenty of fluids you are following the saying of one of the original doctors at Craig Hospital: "The Solution to Pollution is Dilution." Nighttime Care Routine  Hygiene: Cleaning around the opening where the catheter enters your body must be done with soap and water. Dry the area with a clean towel before you dress for bed. Once again, if your Doctor has requested that you use a specific cream or medication around the opening, apply a small amount around the opening.  Catheter Check: Roll the catheter between your fingers to check for grit or build-up. If you feel any build-up that may lead to or is clogging your catheter, prepare to change your catheter immediately.  Change Leg Bag to Night Bag: Disconnect catheter tubing from leg bag and re-connect to night bag. Remember to use an alcohol swab to clean connectors before attaching.  Rinse and Clean Leg Bag: Empty urine out of leg bag into toilet. Rinse leg bag with a water and bleach solution. Mix 1 part bleach to 10 parts water for a good disinfecting solution. Hang leg bag open to air dry.  Check Catheter Tubing: Once you have transferred to your bed for the night, be sure to check catheter tubing for any kinking or bending that may have occurred during the transfer. This is important, as you want your urine draining freely into the night bag while you sleep.

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Weekly Care  At Craig Hospital, we feel it is best to start over each week with a new set of urinary drainage supplies. On Sunday evening throw away all used tubing, leg bags and night bags. Start over with a whole new set of supplies for the week on Monday. If your insurance company or other financial restraints keep you from doing this, you can use the supplies for longer, just make sure you are cleaning daily with bleach and water and the plastic material is still working well and does not have holes. Monthly Care: Changing the Suprapubic Catheter Procedure  Your catheter will have to be changed at least once per month. If B 15 Craig Hospital


your physician has asked you to change it more frequently, follow his/her orders. If your catheter becomes clogged or feels like grit is building up inside, change it immediately. Any time you have to change the catheter follow these step-by-step instructions.

Step 1: Gathering Equipment  Foley Catheter Kit Tray  New Catheter-typically size 24 Fr., silicone-coated.  Extra package of sterile gloves  Soap & water  Empty syringe or scissors  Felt tip marker pen  Chux or other protective cover for bed

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Craig Hospital

Step 2: Removal of Old Catheter  Remove all rings, jewelry, watch, etc.  Wash hands with soap, water & dry thoroughly.  Put on non-sterile gloves.  Mark on the old catheter where the catheter meets the body. This will help you see how far to insert the new catheter.  Using the empty syringe, deflate balloon of old catheter  Withdraw catheter slowly, carefully.  Wash area around the suprapubic opening with soap and water, rinse and dry.  Remove gloves and wash hands again.

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Step 3: Preparation of New Catheter  Arrange Foley insertion kit and new catheter on a table nearby.  Open new catheter by peeling the outside protective sheath. DO NOT touch the inside sheath, lay flat and ready for use later.  Open Foley kit carefully, protecting sterile area.  Pick up the waterproof sheet by the corners and remove it from the top of tray. This sheet can be used under the person or as protective cover for the catheter supplies.  Pick up by the corner the waterproof sheet with a hole in it and place over the suprapubic opening.  Open sterile glove package by pulling on the corners to expose the gloves.  With sterile gloves on, it is vitally important that no non-sterile objects or areas are touched. If the gloves are contaminated by touching anything else, they will have to be removed and another package of sterile gloves will have to opened.  Open package of Betadine solution. Pour solution on three of the cotton balls in tray. Discard extra cotton balls. With the plastic tweezers make sure that the cotton balls are soaked leaving no dry cotton fibers.  Lift and remove tray cover by the hole in the one end, lay on a sterile area only. Remove the sample jar, plastic baggy and sample label.


These will only be used if a health care provider requests a urine sample.  Turn to the opened catheter package. Remember that your gloves are still sterile at this point and you want to keep them sterile.  While wearing sterile gloves, carefully pick up the catheter that is within the sterile package. With both hands, open it carefully to expose the new catheter. Grab the catheter as you peel away the covering. Roll the catheter into one hand to prevent the catheter from touching anything non-sterile.  With the other hand, pick up the pre-filled syringe that is in the bottom of the insertion tray and pop the cap off the end. Connect the syringe to the balloon connection.  Open the packet of lubricant. Generously lubricate the tip of the catheter and lay the catheter on the bottom of the tray.  Pick up one soaked cotton ball with the plastic tweezers and gently wash the area around the suprapubic opening. Using a circular motion swab the area once, discard the cotton ball and repeat again with the last two cotton balls. It is important to just do one complete circle and then repeat process with a new cotton ball.  It may help to designate one hand to always be the sterile hand when preparing the suprapubic opening. One hand can touch the body while the other hand touches only the sterile supplies.

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Step 4: Insertion of New Catheter  Using the hand that has remained sterile, pick up the catheter. Hold the catheter about 4 inches from the tip. Do not let the catheter touch any non-sterile area. You are now ready to insert the new catheter.  Be sure the catheter tip is well lubricated. Insert the catheter tip carefully into the opening. Push inward approximately the same distance of the old catheter. You DO NOT insert this catheter all way into the bladder.  Pick up the syringe that is in the tray and inflate the balloon. Always use the full 10 cc of fluid. The first 5 cc will fill the channel that leads to the balloon and the second 5 cc fills the balloon itself.  Remove the syringe. Pull back gently on the catheter until it meets light resistance.  If during this suprapubic change, you cannot either remove the catheter or insert a new one, you may have to insert a 16 Fr. urethral catheter to relieve the bladder. If this happens, call your health care provider immediately for assistance.  Once catheter has been inserted and balloon inflated, reconnect catheter to either leg bag or night bag. Check bag periodically over the next 30-45 minutes for drainage. If there is no urine present at the end of 45 minutes, the catheter may be kinked or not inserted properly. Be prepared to repeat procedure if urine is not draining.

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Essentials of Catheter Care: Indwelling Urethral Catheter Daily Care

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Morning Care Routine  Hygiene: Cleaning around the urethral opening where the catheter enters your body must be done with soap and water. Dry the area with a clean towel before you dress.  Catheter Check: Roll the catheter between your fingers to check for grit or build-up. If you feel any build-up that may lead to or is clogging your catheter, prepare to change your catheter immediately.  Change Night bag to Leg bag: Disconnect catheter tubing from night bag and re-connect to leg bag. Remember to use an alcohol swab to clean connectors before attaching.  Rinse and Clean Night bag: Empty urine out of night bag into toilet. Rinse night bag with a water and bleach solution. Mix 1 part bleach to 10 parts water for a good disinfecting solution. Hang night bag open to air dry.  Check Catheter Tubing: Once you have transferred to your wheelchair for the day, be sure to check catheter tubing for any kinking or bending that may have occurred during the transfer. This is important as you want your urine draining freely into the leg bag.

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During the Day  Every Hour: Check your leg bag for fullness. You may tend to drain more urine in the morning especially after your morning coffee or other fluids. You also want to look at the color and clarity of your urine. Remember, if it is dark or cloudy you probably need to drink more clear fluids, like water.  Medications: Throughout the day, take your prescribed medications. It is important to stay on a regular schedule. If you notice you are about to run out of a medication, especially if it is one that you are taking long- term, be sure to call your pharmacy and refill your prescription.  Check Catheter Tubing: If you do any transfers in or out of your wheelchair during the day, remember to check the tubing and catheter for kinking or bending. You want your urine draining freely at all times into your leg bag.  Drink Up: All through the day, you need to be drinking plenty of fluids, especially water. The Craig Hospital physicians recommend that people with an indwelling catheter drink at least 3000 cc or 1000 ounces of fluids, preferably water. This fluid intake helps flush out bacteria or germs that find their way into the bladder. By drinking plenty of fluids you are following the saying of one of the original doctors at Craig Hospital: "The Solution to Pollution is Dilution".


Nighttime Care Routine  Hygiene: Cleaning around the urethral opening where the catheter enters your body must be done with soap and water. Dry the area with a clean towel before you dress for bed.  Catheter Check: Roll the catheter between your fingers to check for grit or gunk build-up. If you feel any build-up, prepare to change your catheter immediately  Change Leg bag to Night Bag: Disconnect catheter tubing from leg bag and re-connect to night bag. Remember to use an alcohol swab to clean connectors before attaching.  Rinse and Clean Leg bag: Empty urine out of leg bag into toilet. Rinse leg bag with a water and bleach solution. Mix 1 part bleach to 10 parts water for a good disinfecting solution. Hang leg bag open to air dry.  Check Catheter Tubing: Once you have transferred to your bed for the night, be sure to check catheter tubing for any kinking or bending that may have occurred during the transfer. This is important, as you want your urine draining freely into the night bag while you sleep. Weekly Care  At Craig Hospital, we feel it is best to start over each week with a new set of urinary drainage supplies. On Sunday evening throw away all used tubing, leg bags and night bags. Start over with a whole new set of supplies for the week on Monday. If your insurance company or other financial restraints prohibit you from doing this, you can use the supplies for longer, just make sure you are cleaning daily with bleach and water and the plastic material is still working well and does not have holes. Monthly Care: Changing the Urethral Catheter Procedure  Your catheter will have to be changed at least once per month. If your physician has asked you change it more frequently, follow his/ her orders. If your catheter becomes clogged or feels like grit it building up inside, change it immediately. Any time you have to change the catheter follow these step-by-step instructions.

Craig Hospital

Step 1: Gather Equipment  Foley Catheter Kit Tray  New Catheter-typically 16 Fr. size, silicone-coated  Extra package of sterile gloves  Soap & Water  Empty syringe or scissors  Chux or other protective cover for bed

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Step 2: Removal of Old Catheter  Remove all rings, jewelry, watch, etc.  Wash hands with soap, water & dry thoroughly  Put on non-sterile gloves  Deflate balloon of old catheter  Withdraw catheter slowly, carefully  Wash area around the urethral opening with soap and water  Remove gloves and wash hands again

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Craig Hospital

Step 3: Preparation of New Catheter  Arrange Foley insertion kit and new catheter on a table nearby  Open new catheter by peeling the outside protective sheath. DO NOT touch the inside sheath, lay flat and ready for use later.  Open Foley kit carefully to protect sterile area.  Pick up blue sheet by the corners and carefully remove it from the top of tray. This sheet can be used under the person or as protective cover for the catheter supplies.  Carefully pick up by the corner the blue sheet with hole in it and place over the genital area.  Carefully open sterile glove package by pulling on the corners to expose the gloves.  With sterile gloves on it is vitally important that no non-sterile objects or areas are touched. If the gloves are contaminated by touching anything else they will have to be removed and another package of sterile gloves will have to be opened.  Open package of Betadine solution. Pour solution on three of the cotton balls in tray. Discard extra cotton balls. With the plastic tweezers make sure that the cotton balls are soaked leaving no dry cotton fibers.  Pick up tray cover by the hole near the end of the tray and lay it on a sterile area. Remove the sample jar, plastic baggie and sample label. These will only be used if a health care provider requests a urine sample.  Open the small package of lubricant, open it and squeeze contents into bottom of the tray. Discard the package.  Turn to the opened catheter package. Remember that your gloves are still sterile at this point and you want to keep them sterile.  Carefully pick up the catheter that is within the blue package. With both hands open it carefully to expose the new catheter, grab the catheter as you peel away the covering. Roll the catheter into one hand to prevent the catheter from touching anything non- sterile.  With the other hand pick up the pre-filled syringe that is in the bottom of the insertion tray and pop the cap off the end.  Generously lubricate the tip of the catheter and lay the catheter on the bottom of the tray.  Pick up one soaked cotton ball with the tweezers and gently swab the area around the urethra. Using a circular motion swab the area once, discard cotton ball, repeat again with the last two cotton balls. B 20 It is important to just do one complete circle and then repeat process


with new cotton ball.  It may help to designate one hand to always be the sterile hand when preparing the urethral opening. One hand can touch the body while the other hand touches only the sterile supplies. Step 4: Insertion of New Catheter  Using the hand that has remained sterile, pick up the catheter. Curl the catheter in your hand to prevent it from touching any non-sterile areas before inserting it. You are now ready to insert the new catheter.  Men: Lift penis straight up. Insert lubricated catheter tip directly into external meatus. Insert catheter all the way to the "Y". Only when catheter has been inserted all the way, do you inflate the balloon. Using the syringe that is in the tray insert all of the 10 cc's of fluid into the balloon. Have tray nearby in case urine begins to flow once catheter reaches the bladder.  Women: Spread the labia and visually locate the urethra opening. Remember the vagina is just below the urethra. If you make a mistake and insert the catheter into the vagina, you will have to open another catheter and start over. Insert the catheter approximately 4-5 inches. Urine may begin to flow so have tray nearby to catch urine. Inflate balloon with the syringe that is in the tray. Use all 10 cc of fluid to inflate the balloon.  Once catheter has been inserted and balloon inflated reconnect catheter to either leg bag or night bag. Check bag periodically over the next 30-45 minutes for drainage. If there is no urine present at the end of 45 minutes, the catheter may be kinked or not inserted properly. Be prepared to repeat procedure if urine is not draining.  Wash all remaining Betadine off the skin surface and around the catheter with soap and water.

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Š Craig Hospital 3425 South Clarkson St. Englewood, Colorado 80113

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Craig Hospital

303-789-8000

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C Bowel Management

 Structure and Function of the Digestive Tract.......................3  Changes After Spinal Cord Injury................................................5 Physical Emotional Social

Healthy Bowel Management..........................................................5 n Diet and Fluid Intake n Activity n Medications

 Bowel Program Essentials...............................................................7 n Schedule Position Suppository n Digital Stimulation

 The Bowel Program-At-A-Glance...............................................10

 Resources.............................................................................................13

Potential Problems and Solutions...............................................11 n Autonomic Dysreflexia n Constipation n Diarrhea Excessive n Gas n Fecal Impaction n Involuntaries n Rectal Bleeding

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Structure and Function of the Digestive Tract

As we begin our discussion of Bowel Management, it’s important to remember how vital the whole process of digestion and elimination is to the healthy functioning of our bodies. Digestion is the process that makes it possible for the body to process nutrients from food. Nutrients are elements small enough to be taken into and transported by the blood to different parts of the body. What cannot be used is then transported out or eliminated in the form of stool. The entire process, from swallowing of food to the elimination of fecal material or stool takes an average of 48 hours. This transit time for people with SCI often takes longer depending on the level of injury, diet habits and activity level.

Each part of the digestive system has an important job and plays a role in the process of digestion and elimination.

The mouth begins the digestive process. The food is crushed and divided into small pieces as it is chewed. Saliva mixes with the food preparing it for digestion. The esophagus is a long muscular tube that pushes the food down to the stomach through a process known as peristalsis (a wave-like action of the muscles).

When the food enters the stomach, it moves back and forth and gastric juices mix into it. This process changes the food into a semi- liquid state.

The small intestine does most of the digestion and absorption of food. Tiny blood vessels in the intestines pick up nutrients from the digested food and carry them throughout the body.

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The rectum is usually empty until just before a bowel movement. Feces entering the rectum stimulate sensory nerve endings and cause an awareness that you need to have a bowel movement.

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The food that is not absorbed by the small intestine moves into the large intestine. The principle function of the large intestine is the absorption of water. The removal of water changes the intestinal contents from a liquid state to a more solid consistency of fecal matter. Mucus is secreted in considerable quantities and holds the waste particles together in a solid mass. Mucus also protects the lining of the intestines and acts as a lubricant. The fecal matter is stored in the large intestine until peristalsis moves it through the rectum and out of the body.

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Internal and external anal sphincter muscles close the rectum until the fecal matter passes through. The strong peristaltic movements of the large intestine cause the fecal matter to pass out of the rectum. This is called the defecation process.

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Digestive Tract

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Changes After Spinal Cord Injury

Physical Changes Because the damage to the spinal cord interferes with sensory signals from the rectum to the brain and signals from the brain to the sphincter muscles, conscious control over the defecation process is changed. This means that for many people with a spinal cord injury (SCI) the sensation to have a bowel movement and the ability to control a bowel movement are lost. Another change after SCI, is that the bowels move slower. It takes longer for digestive materials to move through the bowels. This movement is called peristaltic action. With a loss in sensation and slower bowels, a person with SCI now has to think about and plan bowel movements.

Emotional Changes A SCI can mean a loss of control over many areas of your life. Not having control of your bowels can be a very frustrating experience. During your rehab stay you will learn that being in control means knowing how to take care of yourself again. Establishing and maintaining a regular bowel program will help you get back to having control over a very important bodily function.

Social Changes Successful bowel management will allow you to have a full and active social life. You will have to make sure that plans for the day allow time for your bowel program. You must be sure to maintain a regular bowel program time that fits into your lifestyle. The fear of a bowel accident during sexual activity is a natural concern for people with SCI. If you are on a regular bowel management program, however, there is no reason to expect that sexual activity will put you off schedule or cause an accident. You might want to make sure your bowels are empty prior to sexual activity and be sure to talk this concern over with your partner.

Healthy Bowel Management

Diet and Fluid Intake Eating a variety of foods throughout the day will give your body

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A healthy functioning bowel system is the combination of many factors. The primary goal of bowel management is to promote regular emptying of the bowels for cleansing and health. In addition to establishing a consistent bowel program, attention to diet, fluid intake, activity and medications all play a part in maintaining bowel health.

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the nutrients it needs for healthy functioning. Use the most recent guidelines from the United States Department of Agriculture (USDA) to assist in eating a healthy, well balanced diet. The USDA food recommendations are useful for people with SCI because the recommendations provide for a high fiber, low-fat diet. This is important because fiber helps stimulate peristaltic action of the bowels. With a high-fiber diet it is also important to drink plenty of water (depending on bladder management) to keep the stool soft enough for elimination. Experience also teaches you what kinds of foods may cause problems with your program. A well-balanced diet and the proper kinds and amounts of fluids will help to make your bowel program a success.

Activity All physical activity stimulates bowel function, whether competitive sports or activity of daily living such as transfers. Just getting up and out of bed is important for overall health and well-being. Participating in sports and fitness is one way of increasing physical activity. Activity helps the mind as well as the body‌.you will feel better overall and keep those bowels moving too.

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Medications The medications you are taking may have side effects that can influence bowel elimination. For example, pain medications can cause constipation, while antibiotics can cause diarrhea. Ask your doctor or pharmacist whenever you start a new medication about how it may affect your bowel function. Sometimes you may be using medications to help the function of your bowels. As with all medications, know the purpose, name, dose, frequency and any side effects of the medication.

Stool softeners are often prescribed to keep the stool soft and to help prevent constipation. They should be taken as ordered by your physician. If the stool becomes too soft, the number of stool softeners should be decreased or possibly eliminated. Speak with your healthcare provider before making changes to your prescribed medications. Common names of stool softeners prescribed are Peri-Colace and Colace.

Bulk-formers or fiber medications help bulk up the stool to increase peristaltic action or movement of the bowels. As with any increase fiber in your diet it is important to drink plenty of water, as your bladder management allows, so the stool can be soft and move through the system. Common names of fiber medications prescribed are Fiber-Con, Metamucil, and Benefiber. Be sure to follow the directions on the medication container. You will need to drink at least one glass of water with each dose of fiber medication.

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Suppositories are used to help stimulate the peristaltic action of the bowels to get them moving. These are inserted into the rectum for approximately 20 minutes prior to any digital stimulation or stool removal. Common types of suppositories prescribed are Magic Bullet, and Dulcolax.

Laxatives and enemas should not be considered as a first line of treatment for constipation, and they should not be used regularly. The routine use of either enemas or laxatives will cause the bowel to become dependent on the chemicals and will make a regular bowel program more difficult to establish and maintain.

Bowel Program Essentials The Bowel Program A bowel program means establishing a regular time to stimulate the bowels to cause a bowel movement. A suppository, digital stimulation or a combination of the two can stimulate the bowel. This will help prevent involuntary bowel movements, constipation and impaction of the bowels. See “Bowel Program At-a-Glance� page C-10.

Bowel Program Schedule Your bowel program must be done at regular times in order for it to be successful. Therefore, it is important to use the same method at the same time each day. Some people find the time after the morning or evening meal to be the most convenient and natural time for a bowel movement. This allows you to take advantage of the normal reflex function of the bowel that increases after eating.

It will take time to establish a regular bowel program and get your system set up on a regular schedule. Your nurses will help you establish a regular bowel program when you first come to our hospital. It will be important to maintain a regular time for the bowel program to happen because your body will eventually get used to elimination C7 at that time. Try to keep your bowel program time within two hours

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of your scheduled time. If you skip it or are very late you will run the risk of experiencing an involuntary bowel movement (when stool comes out accidentally).

As you get closer to discharge you may want to change your bowel program time schedule to fit your lifestyle and anticipated activities. This is perfectly acceptable, but you may experience some difficulty with involuntary bowel movements during the changing period. So it is important to work with your nursing staff to help make this change a few weeks before going home.

Bowel Program Position Sitting up during your bowel program is the best position so gravity can help in the elimination process. Physical Therapy and nursing staff will help you learn the safest and best way to transfer onto and off a commode chair or even an elevated toilet seat for your bowel program. If you must be in bed for your bowel program due to illness, skin problems or other reasons, then lie on your left side. The large intestine empties to the left side.

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Inserting the Suppository If you use a suppository, insert it into the rectum, next to the rectal wall. Avoid placing the suppository directly into any stool that may be present. It is best to remove any stool in the rectum prior to inserting the suppository. The chemicals in the suppository must have contact with the rectal tissue to work. Let the suppository work for about 15- 20 minutes before starting any digital stimulation. Know how long your suppository needs to work by reading the instructions of the suppository. Your bowels may begin to move on their own with the suppository. That is OK. Just have a receptacle or toilet under you to catch any stool that may come out unexpectedly.

Digital Stimulation The purpose of digital stimulation is to stimulate a reflex action of the large intestine to cause movement of the stool into the rectum for proper elimination. The digital stimulation or “dil” for dilation of the sphincter muscle, helps relax the muscle so it will open up and allow stool to come out.

The “dil” procedure is the use of a gloved, lubricated forefinger inserted gently into the rectum. Insert finger into rectum 1/2 to one inch, no further than the first finger joint. Inserting finger any further could injure the delicate mucous membrane of the rectum. Gently move the finger in a circular motion until the anal sphincter relaxes, then remove finger for a few minutes to allow the anal sphincter to contract and move stool down. Then reinsert your finger and move finger in a gentle circular motion to stimulate peristalsis and cause the lower bowel to begin to move. Repeat this process. You should try to stimulate for NO more than 1-2 minutes at a time.

When evacuation is occurring, gently pull rectum to one side and allow gas and fecal material to pass. When no more stool is present, resume the digital stimulation and repeat the process until the bowel is empty.

 Your bowel program is finished when:  No more stool is present  You feel complete and empty  A rectal check with gloved lubricated forefinger comes out clean 2-3 times. If hemorrhoids are present, they may bleed a small amount when the rectum is stimulated. If a large amount of bleeding occurs, stop immediately and notify your physician.

Clean rectal area thoroughly with a soft, disposable wipe (flushable or non-flushable). Then wash with soap and water and dry thoroughly with a towel.

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Dispose of used supplies. Stool can be flushed down the toilet. All other materials should be discarded in a tightly sealed plastic bag.

Be sure to wash and dry your hands thoroughly before and after performing the bowel program.

The Bowel Program At-A-Glance

Bowel Program Supplies

 Gloves  Suppository, if needed Wash clothes or wet wipes  Water-soluble lubricant (KY Jelly)  **Do not use Petroleum jelly or Vaseline  Receptacle for disposal of stool (toilet, trash can)

Procedure

Getting Ready  Sitting position is best (commode chair or elevated toilet seat)  Wash and dry hands  Put on gloves  Insert suppository while lying down if possible and wait 15-20 minutes  Transfer to commode chair or elevated toilet seat

Digital Stimulation  Lubricate gloved index finger  Insert finger ½ inch into rectum to relax sphincter muscle  Move finger in a circular pattern to stimulate peristaltic action  Use digital stimulation for no longer than 1-2 minutes  Remove finger or gently pull rectum to one side to allow any stool to pass  When no more stool is passing, repeat digital stimulation again  After 20-30 minutes and no more results, stop the procedure

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Clean Up

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 Clean rectal area thoroughly with soap and water.  Dispose of toilet paper (if used) and stool in toilet  Throw away all other materials in a plastic bag  Remove gloves inside-out  Wash and dry hands


Potential Problems and Solutions

Autonomic Dysreflexia (During bowel program)

Cause: Constipation/impaction, too rough of digital stimulation (dil), hemorrhoids, rectal stimulation of any kind. Solutions: Use more gentle digital stimulation technique. Remove stool gently from rectum. Do bowel program sitting up. Insert anesthetic ointment into the rectum before and periodically throughout bowel program (prescribed by healthcare provider). If symptoms occur, stop the “dil”, check blood pressure, and wait for the blood pressure to go down and the pulse to rise before trying again. This may be necessary throughout the bowel program. If this occurs repeatedly during your bowel program, notify your healthcare provider. There are medications available to help keep blood pressure down. Constipation Cause: Poor diet, decreased fluid intake, narcotic pain medications, skipping a bowel program, overuse of laxatives, change in living habits, inactivity. Solutions: Check out possible causes. Drink more fluids; drink prune juice and eat foods high in fiber (fruit, vegetables, sweet potatoes, raisins, whole grain breads, cereals such as oatmeal, shredded wheat and bran). Adjust stool softeners. If digital stimulation is required for periods of an hour or longer, consider using a suppository. Use a daily bowel program until your regular pattern is established. Diarrhea Cause: Fever, flu, some medications, change in diet, fecal impaction, laxatives, too many stool softeners, change in living habits, stress, large intake of alcohol. Solutions: Check out possible causes. Eat applesauce, bananas, cheese, sweet tea and broth. If drinking soda, let “fizz” wear off. Stay away from hot or cold foods/fluids. If diarrhea is persistent, notify your physician. It may take two - four weeks to regulate your bowel program after diarrhea. ©

Excessive Gas

Cause: Lying in bed for prolonged length of time, hyperventilation, poor diet, eating gas-forming foods (onions, cabbage, cucumbers, spicy foods, etc.), side effect of some suppositories.

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Solutions: Check out possible causes. Adjust or change eating habits as needed. Lay stretched out on stomach or back for 30-40 minutes. Increase activity, if allowed. Change type of suppository. Do not use a heating pad on your stomach.

Fecal Impaction

Cause: Fecal impaction is the buildup of hard stool in the bowel. This results in the inability of the digestive system to function normally Poor diet, decreased fluid intake, some medications, not doing a bowel program, overuse of laxatives, change in living habits, inactivity, staying in bed. The symptoms of fecal impaction are little or no results during your bowel program, for several days, a gas-filled abdomen or even small amounts of liquid, oozing stool. Solution: Check out possible causes. Drink more fluids, drink prune juice and eat foods high in fiber (fruit, vegetables, sweet potatoes, raisins, whole grain breads, cereals such as oatmeal, shredded wheat and bran). Adjust stool softeners. If digital stimulation (dil) is required for periods of an hour or longer, consider using a suppository with the dil. Do a daily bowel program until your regular program is reestablished. If you suspect that you are impacted and you are not able to correct it yourself, call your health care provider.

Involuntary Bowel Movements

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After any involuntary bowel movement you should check make sure all the stool has emptied from the rectum. If stool is present within the rectum, it should be removed. The nature of the stool (i.e., color, odor, bleeding or anything unusual) and the consistency of the involuntary bowel movement should be noted. Review your diet, medication, and bowel program. Following an involuntary bowel movement, you should return to a daily bowel program until your regular program is reestablished.

Rectal Bleeding

Cause: Hemorrhoids, digital stimulation that is too rough, hard stool, long fingernails, excessive straining. Solutions: More gentle digital stimulation with adequate lubrication. Try eating foods listed above under constipation for softer stools. See your healthcare provider if the bleeding persists.


Resources  PVA Consumer Guidelines (free, no cost)  Autonomic Dysreflexia: What You Should Know  Neurogenic Bowel: What You Should Know at www.pva.org Educational Videos  Bowel Management after SCI  Autonomic Dysreflexia

Brochures Available from the Craig Hospital Research Department:  Bowel Problems  Colostomies: A Radical Approach to Bowel Management  Cutting the Fat  H2Oto Go: Hydration

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Complications After Spinal Cord Injury

 Autonomic Dysreflexia....................................................................3 n What is Autonomic Dysreflexia (AD)? n Causes of AD n Signs & Symptoms n Prevention of AD n If AD Occurs Follow These Steps  Heterotopic Ossification..................................................................6 n What is Heterotopic Ossification (HO)? n Signs & Symptoms of HO  Postural Hypotension/Orthostatic and Hypotension/Low Blood Pressure ..............................................7 n What is Postural/Orthostatic Hypotension? n Signs & Symptoms n How to Prevent Low Blood Pressure  Post-Traumatic Tethered Spinal Cord and Syringomyelia......................................................................................8 n What is a Post-Traumatic Tethered Spinal Cord and Syringomyelia?  Spasticity...............................................................................................9 n What is Spasticity? n Treatment of Spasticity  Temperature Regulation...............................................................10 n Hyperthermia or Overheating n Hypothermia or Being Too Cold n Signs & Symptoms n Prevention n Treatment  Resources.............................................................................................12 © Craig Hospital

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Autonomic Dysreflexia or Autonomic Hyperreflexia Autonomic Dysreflexia (AD), formerly called autonomic hyperreflexia, is an abnormal response to pain or discomfort in your body below your level of spinal cord injury (SCI). It is a complication in which the blood pressure can gradually rise to serious levels until the cause is found and fixed or treated. If the cause is not found and treated immediately serious complications such as a seizure or stroke may occur. AD can be caused by any stimulation below the level of SCI. For example, the most common cause is an overfilled bladder.

The level and extent of the spinal cord injury determines how susceptible you are to Autonomic Dysreflexia. Anyone with an injury at T6 or above is at risk of experiencing AD. People with a SCI level of T6-T10 may be at moderate risk and those below T10 are usually not at risk for AD. Pregnancy can cause AD for any person with an injury at T10 or above.

Common Causes of AD:

 Overfilled bladder, bladder infection, bladder or kidney stones  Bowel constipation or hard stool  Pressure sores or skin irritation  Contact with hard surfaces or sharps objects  Sexual activity, genital stimulation, erections  Menstruation, pregnancy, labor and delivery  Broken bones, ingrown toenails  Clothes or shoes fitting too tight

In general, anything that would have been painful, uncomfortable or physically stimulating before spinal cord injury may cause Autonomic Dysreflexia after a spinal cord injury. Overfilling of the bladder is the most common cause of Autonomic Dysreflexia.

If you have an indwelling catheter, Autonomic Dysreflexia may be caused by:

 Catheter or drainage tubing that is blocked or kinked  Leg bag or drainage bag that is completely full  Defective or incorrectly attached leg bag  Bladder infection or bladder stones  Changing a catheter or irrigating the bladder

If you do not use an indwelling catheter Autonomic Dysreflexia may occur if:

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 Your bladder has overfilled without sufficient emptying  You have a bladder infection which may interfere with the bladder emptying

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 Voiding itself may be a trigger of AD on occasion  Bladder spasms, stones and infections often increase your susceptibility to AD  If you have not had problems with AD and start to have episodes of it, you may need to see a Urology doctor who will check your bladder and kidneys Signs and symptoms of Autonomic Dysreflexia:  Rapidly rising blood pressure  Pounding headache (caused by the rise in blood pressure)  Slow heart rate  Sweating above the level of injury  Goose bumps or chills  Blotching or flushing of the skin  Stuffy nose, blurred vision  Feeling of anxiety or nervousness Preventing Autonomic Dysreflexia Prevention of Autonomic Dysreflexia is very important. Precautions include: Bladder Care  Follow a routine bladder management program. Check your catheter drainage system often and be sure that the catheter and tubing are not kinked  If you do intermittent catheterization, stay on schedule and be sure your bladder is emptied all the way  Schedule regular bladder check-ups with your healthcare provider

Bowel Care  Stick to your bowel program to prevent constipation or bowel accidents.  Eat foods high in fiber and low in fat  Drink plenty of fluids  Use lubrication for the digital stimulation during the bowel program  Be sure that digital stimulation is done slowly and gently If you experience AD during your bowel program, speak to your health care provider.

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Skin Care  Check your skin at least once per day for red spots, scrapes, or scratches below the level of your SCI.  Perform regular weight shifts in your wheel chair and always sit on a cushion to protect your skin  Make sure clothing, shoes, braces and other equipment fit properly and are not rubbing or too tight D4


Sexual Activity or Reproduction  Be aware that genital stimulation that is too rough, especially when using a vibrator are possible causes of AD. Use plenty of lubrication and be gentle.  Men: Ejaculation, infection or inflammation of the testicles or pressing or squeezing of the testicles can cause AD. You may want to discuss this with your health care provider  Women: Menstruation, pregnancy, especially labor and delivery or infections of the vagina or uterus may cause AD  If you are pregnant or planning a pregnancy, look for an OB/GYN who is willing to work with you and understands the causes and treatment of AD

Yearly re-evaluation  Schedule your yearly re-evaluation check-up. Early discovery of potential problems can prevent serious trouble later on. Discuss with your doctor and nurses any problems concerning AD. If Autonomic Dysreflexia Occurs, Follow These Steps: Step 1. Come to or remain in a sitting position to at least 90 degrees. If you can, lower your legs. This position will help lower your blood pressure. Step 2. Loosen or take off anything tight: n Abdominal binder n TED hose or tight socks n Clothes, belts n Shoes or leg bag straps n External catheter tape

Check your blood pressure. Have someone check your blood pressure. If it is severely elevated over your normal levels and you are unable to find the cause of AD, seek emergency medical treatment.

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Step 3. Find and correct the cause. What is causing the irritating stimulus? n Check your bladder. Check your catheter and tubing. Is your catheter draining properly? Empty your leg bag if it is full. n Catheterize yourself if you do intermittent catheterization. n If AD is during your bowel program, stop the digital stimulation. Wait for the symptoms to stop and then start again. Use more lubrication and a gentler dil. n Check your skin. Are you sitting on anything hard or sharp? n Do you have an ingrown toenail?

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IMPORTANT: If your symptoms get worse and you cannot find the cause within 20-30 minutes, call your health care provider and go to the Emergency Room.  Tell the ER staff that you may be experiencing AD and need immediate treatment.  Ask to have your blood pressure taken.  Request to remain sitting up as long as your blood pressure is high.  Take your Autonomic Dysreflexia wallet card with you. It has important information on it for the ER staff to follow.

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Heterotopic Ossification: Abnormal bone growth

Heterotopic ossification (HO) is the development of abnormal bone in soft (non-skeletal) tissue, primarily in the region of the hip and knee joints. It occurs in many spinal cord injured individuals and may develop within days following the injury or several months later. Heterotopic ossification only occurs below the level of injury. The exact cause of HO is unknown.

Most cases of heterotopic ossification cause no significant additional physical limitations, but in a minority of patients, HO may result in a major limitation of joint motion. The first symptom often noticed is difficulty or limitation in the ability to perform activities of daily living, especially activities that require you to bend at the hips. The reason for the difficulty is the development of bone mass at the hip joint that interferes with the full movement of that joint.

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However, sometimes the onset of HO is more rapid, and symptoms at that time may be swelling of one hip with warmth and redness over the swelling. An elevated temperature is often related to HO, especially if temperature increases more during the night than during the day.

Signs and Symptoms of Heterotopic Ossification (HO):  Decreased range of motion  Swelling in the area of the HO  Swelling of the entire leg  Elevated temperature  Increased spasticity  Increased Autonomic Dysreflexia

If you suspect you have HO, contact your Craig Hospital doctor. He or she may order a special isotope bone scan of your hips and knees and blood tests to determine if you have HO. Medication for HO may be prescribed by your healthcare provider and can slow down or stop the process if started early.

If you have HO, watch your skin closely. HO can increase the amount of pressure applied to the tissue under certain bony areas.

Postural Hypotension/Orthostatic Hypotension: Low Blood Pressure Low blood pressure also known as postural hypotension or orthostatic hypotension is a condition which results in a decrease in blood flow to the brain when you are sitting or standing. This can cause “light- headedness” or “fainting”. It occurs more commonly when you are first injured, when fatigued or after any illness. You will have an increased tendency for postural hypotension if your level of injury is at T-6 or above, but it can occur in all spinal cord injured individuals.

After your spinal cord injury, the blood vessels do not decrease in size in response to lowered blood pressure due to the altered function of the autonomic nervous system. Because of this, blood pools in legs, feet and ankles while you are sitting or standing.

Postural hypotension usually occurs when you are transferred into your wheelchair or the standing frame. To prevent this, you may be asked to wear compression stockings and possibly an abdominal binder. It is also helpful to come to a sitting or standing position slowly.

If postural hypotension occurs while you are in a wheelchair, you may be tilted backward

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until your head and neck are nearly horizontal to the floor. This will increase your blood pressure and the light-headedness will quickly disappear. You can slowly return to a sitting position once you are feeling better. Another problem that may occur as a result of the lowered blood pressure is a decrease in the amount of urine produced by the kidneys. You may notice that there is little or no urine in your leg bag while you are sitting up. After you recline, your leg bag may fill quickly. This is a result of the increase in blood pressure that occurs when you lie down when more fluids are released from the lower legs and feet. Watch your drainage bag closely after transferring into bed to make sure it does not fill too quickly.

Post-Traumatic Tethered Spinal Cord and Syringomyelia

Post-traumatic tethered cord is a condition that can occur following spinal cord injury and can result in progressive deterioration of the spinal cord. Tethering is where scar tissue forms and tethers (or holds) the spinal cord to the soft tissue covering which surrounds the spinal cord. This covering is called the dura. Post-traumatic syringomyelia is a condition that can occur following a spinal cord injury which can result in progressive deterioration of the spinal cord. Post-traumatic syringomyelia involves development of a fluid-filled cavity (called a syrinx or cyst) within the spinal cord following an injury to the spinal cord.

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Signs and symptoms of a tethered spinal cord or a syringomeylia:  Change or loss of sensation and/or muscle function  Increased sweating or unusual sweating pattern (i.e., sweating only when lying in a specific position, sweating only on one side of the face or neck, profuse sweating)  Change in spasticity  New pain or a change in typical pain patterns  Autonomic Dysreflexia  One pupil appears larger than the other

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Increased sweating and spasticity are symptoms that may occur with other problems associated with spinal cord injury. However, significant loss of sensation or muscle function strongly suggests a change in the spinal cord. The changes in sensation or muscle function may develop


gradually. You may notice that it is more difficult to do some of your every day activities, such as holding a cup or dressing yourself or notice a change in balance or find there are areas of your body that previously had sensation but now do not. Be aware of your sensory level and muscle strength. If you notice significant changes, contact your physician, and give specific information about the changes. You may be asked to come in for a check-up and a muscle and sensory test will be done. If there are significant changes, other tests will be conducted. If you have loss of function or sensation due to a cyst or spinal tethering, it may be helped with surgery and if done soon enough after symptoms begin, many patients regain lost function. However, full recovery of lost function cannot be guaranteed.

Spasticity

Spasticity is common in varying degrees after spinal cord injury. It is the involuntary movement (jerking) of muscles that occurs because messages can travel from parts of your body to the spinal cord and cause reflex activity or movement of the muscle. This is possible because the spinal cord has certain normal automatic functions which are not under the influence of the brain. These functions include muscle tone and reflexes. Most spinal cord injured persons have a healthy, intact spinal cord below the immediate area of their injury and these automatic activities can continue to exist. However, they are no longer under the regulating influence of the brain and are exaggerated. This is called spasticity.

Sensory stimulus below the level of injury can cause spasticity. For example, a change in body position, movement of a leg or arm, bladder irritation, pres- sure sores, fractured bones or during a bowel program.

Sometimes, minor degrees of spasticity may be helpful to you. Due to the muscle movement, your circulation is improved and the movement also helps to maintain the shape and bulk of your muscles. However, if muscle spasms are severe they can interfere with functional activities such as transfers, weight shifts, gaiting, wheelchair positioning or sleeping. Some stimuli may cause a change in your spasticity. Anything that would ordinarily be uncomfortable or painful can cause an increase in your spasticity. If you experience a major increase in spasticity, possible causes are:

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 Skin Problems: a pressure sore, skin irritation or ingrown toenail  Bladder Problems: bladder infection, bladder stones, not emptying the bladder completely with intermittent catheterization  Bowel Problems: constipation, impactions or hemorrhoids or during digital stimulation D9


 Medical Problems: viral syndromes (infection, influenza, intestinal flu), heterotopic ossification or a spinal cyst Although a change in the pattern of your spasticity does not always indicate another problem, it is wise to check all possibilities. If you have increased spasticity which persists, consult your doctor. If your spasticity is severe and interferes with function there are several medications that may help. Spasticity may also be helped by regular stretching, range of motion exercises, standing and massage therapy. Temperature Regulation: Hyperthermia or Hypothermia

Because of the spinal cord injury, your body temperature has a tendency to take on the temperature of the environment. If you are in a hot room your temperature may increase; if you are in a cold room, your temperature may decrease. This occurs because of the altered function of the autonomic nervous system which is how the brain regulates body temperature automatically. The higher the level of injury, the greater the tendency for temperature regulation problems.

Hyperthermia

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Hyperthermia refers to an elevation in body temperature. For example, it may occur on a hot day when out-of-doors, sitting in a hot car, or covered with too many blankets. Signs and symptoms of hyperthermia:  Skin feels hot, dry and appears flushed  Feeling of weakness  Dizziness  Visual disturbances  Headache  Nausea  Elevated temperature  Pulse is generally rapid and may be irregular or weak

How to prevent overheating or hyperthermia:  Know your own body and how long you can stay in a hot environment without problems.  Drink lots of fluids, especially water.  Wear protective, light-weight clothing (cotton and light colors).  Wear a hat, sunglasses and stay out of direct sunlight.  Mist yourself with water from a spray bottle.  Rest more often during hot weather.  When indoors, limit the amount of clothing you wear and the number of blankets you use.

If hyperthermia occurs, decrease your body temperature by: D 10  Remove the cause or move into a cooler environment


 Use a fan  Sponge or mist your body with water  Drink cool fluids

If your body temperature is above 102 degrees and/or cannot be lowered within 30-60 minutes, call your physician. Complications that can occur from prolonged, untreated hyperthermia include a loss of consciousness and seizures.

Hypothermia

Hypothermia refers to a decrease in body temperature. It can occur when outside in cold weather too long or in a room with air conditioning.

Signs and symptoms of hypothermia:  Cold skin  Shivering  Decreased body temperature  Decreased blood pressure, pulse, and respiration  Confusion

You may prevent hypothermia by dressing warmly and limiting the time you spend in a cold environment. It is helpful to wear a hat and scarf around your neck. Your feet need the special protection of warm socks (preferably wool) during cold weather.

If hypothermia occurs, attempt to warm your body by:

 Remove yourself from the cold environment  Add more clothing or a blanket  Use a warm shower or tub bath (dress warmly afterwards so evaporation does not cool you)  Wrap extremities in warm, moist towels Do not massage affected cold areas to generate warmth. Do not use a hot water bottle, electric heating pad or other sources of extreme heat on areas of impaired or absent sensation. There is the possibility of burning yourself without even knowing it. Warm up cold areas slowly and safely. Skin problems can occur with hypothermia, so check your skin closely. If hypothermia is not treated, sleepiness, drowsiness and possibly death can occur.

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Resources Education Videotapes  Craig Hospital Education Video: Autonomic Dysreflexia  Autonomic Dysreflexia: What You Should Know” Consumer Guide www.pva.org

Available from Craig Hospital Research Department  Diabetes  Fatigue  Heart Disease  Osteoporosis  Spasticity  Weight Gain: Battle of the Bulge  Interacting with your Doctor  You and your doctor: Rights and Responsibilities

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NOTES

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Medications

 Overview..................................................................................................3 n What to Know About Your Medications n Drug Interactions n Allergic Reactions n Medications and Street Drugs n Medications and Alcohol n Medications and Alcohol Table  Common Medications........................................................................7 n Antibiotics n Bladder Medications n Low Blood Pressure Medications n Blood Thinners n Bowel Medications n Magic Bullet Order Form n Pain Medications n Spasticity Medications n Stomach Medications  Herbal Medications and Dietary Supplements........................19  Going Home: When You Leave Craig Hospital......................20  Resources..............................................................................................21

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Overview

Medication is taken to help your body adjust to the changes that have occurred since your spinal cord injury. Medications are chemicals that interact with different parts and systems of your body. They may replace chemicals that may be low in your body. They may help systems that aren’t quite working right. They help maintain the chemical balance throughout your body. The proper use of medications is a very important aspect of learning about your spinal cord injury.

You were started on medications immediately after your spinal cord injury to help your body adjust to the trauma of the injury. As you progress through your rehab program, medications will be added or stopped as directed by your doctor.

You are probably taking more medications now after your spinal cord injury than you ever did before in your life. Talk with your doctor about the medications you can expect to be discontinued as you progress through your rehab program.

Although it may be confusing at first it is important to know some basic information about your medications. Make sure you get clear answers to these questions before you take any medications.

What to Know About Your Medications:

 What is the brand name and generic name of each medication?  What is the purpose of the medication?  When should this drug be taken?  How much of the medication should I be taking?  How long should this drug be taken? Do I stop taking it if I feel better?  Are there any side effects of the drug?  Are there any special precautions, such as take it with meals, water or on an empty stomach?

 Will this medication make me more sensitive to the sun? Do I need to wear protective clothing, sunscreen &/or sunglasses?

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 What about drinking alcohol while taking this medication? Is it OK to drink?

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 Will it interfere with the medications I am already on?

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Interactions:

Drugs can also interact with each other. One drug can stop another from working properly or can make another drug have a greater effect than is needed. It’s best if you discuss the following points with your doctor.

 Your doctor always needs to know all the medications you are taking to be sure they work well together. Don’t forget nonprescription medicines such as aspirin, laxatives, antacids, over-the-counter cold medications and painkillers.  Your doctor will need to know about any herbals or other supplements you are taking.  Check with your doctor about drinking beer, wine, or liquor, because alcohol affects the way many drugs work.

Allergic Reactions:

Taking a medication to which you are allergic can create serious medical problems, (particularly if the medication is an antibiotic). The most common allergic reaction to a medication is a rash. However, you may be allergic if you develop a severe headache, nausea and vomiting. If you should develop a reaction to a medication, follow these steps:  Stop taking the medication and call your doctor  Write down the name of the medication  Inform all of your physicians, nurses and pharmacists of the allergy  Never take the medication again

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 Know all medications to which you are allergic. Write the names down so you can tell all doctors, nurses and pharmacists about those medications and the allergic reaction that you have had.

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Medications and Street Drugs

When a medication is taken in combination with another medication, the interaction between the two drugs can cause a serious reaction. This reaction can occur when two prescribed drugs are taken in combination and when a street drug is used in combination with a prescribed drug.

There are documented reactions such as the combination of bladder medications with cocaine or amphetamines, which can cause an increased heart rate, increased dryness of mouth and blurred vision. The combination of anti-spasticity medications and marijuana has a sedative effect. There are also unknown reactions that can occur due to individual reactions to drugs and the fact that most street drugs are not always what the sellers say they are and may contain a mixture of drugs.

Another reaction that can occur when taking street drugs is dizziness, poor coordination and forgetfulness. This can mean that you will not take care of yourself. You may neglect weight shifts, perform poor transfers or even fall out of your chair. This could lead to skin problems and possible injury.

Medications and Alcohol

The effects of alcohol combined with the effects of your medications can cause serious medical complications. In extreme cases, these complications can be severe and deaths have been reported.

The table on the following page summarizes some of the alcohol-drug interactions of particular importance for people with spinal cord injuries. However, these examples identify only a few of the many types of drugs that can interact with alcohol. It’s also important to consider many other types of medications used to treat symptoms and conditions unrelated to your injury. These include prescription drugs, as well as some over-the-counter medications, such as painkillers, cold medications and some types of antihistamines. Therefore, it’s important to review all your medications with your doctor or pharmacist before deciding to use alcohol.

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Medications and Alcohol Table Purpose

Interaction with Alcohol

Baclofen (Lioresal)

Spasticity

Drowsiness, dizziness, fatigue, weakness, decreased motor coordination

Clonazepam(Klonopin); Diazepam (Valium); Lorazepam (Ativan) & other sedatives

Spasticity, anxiety

Drowsiness, dizziness, fatigue, weakness, decreased motor coordination, problems breathing

Warfarin (Coumadin)

Blood clotting problems

Risk of blood clot or bleeding

Antidepressants (e.g., Zoloft, Paxil)

Pain, depression

Drowsiness, dizziness, fatigue, weakness, decreased motor coordination

Narcotic analgesics (e.g., acetaminophen with codeine; hydrocodone; Darvocet, Vicodin, Lortab, Percocet)

Pain

Drowsiness, dizziness, fatigue, weakness, decreased motor coordination, problems breathing

Acetylsalicylic acid (ASA; aspirin) & other anti-inflammatory drugs (e.g., Naproxen; ibuprofen

Inflammation, pain

Increased risk of gastric bleeding and pain

Metronidazole (Flagyl) & other antibiotics

Infection

Facial flushing, nausea & vomiting

Hypnotics (Ambien; Restoril; chloral hydrate)

Aids in sleeping

Drowsiness, dizziness, fatigue, weakness, decreased motor coordination, problems breathing

Anticholinergics (Ditropan; Ditropan XL)

Stops bladder spasms

Extreme drowsiness

Antihistamines (cough and cold preparations; allergy medications) either by prescription or over-the-counter

Relief for colds; flu symptoms; seasonal allergies

Drowsiness, dizziness, fatigue, weakness, decreased motor coordination, problems breathing

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Common Medications Antibiotics

Some common antibiotics are:

 Levaquin (levofloxacin)  Cipro (ciprofloxacin)  Penicillin  Amoxicillin/Ampicillin  Tetracycline  Bactrim (sulfamethoxazole/trimethoprim)  Cleocin (clindamycin)  Erythromycin  Flagyl (metronidazole)

Antibiotics and antibacterial medications destroy and prevent formation and growth of bacteria that causes infection and illness. There are specific antibiotics for specific bacteria. Your doctor will determine the best antibiotic for you to take depending on the location, severity and bacteria of your infection. NEVER use another person’s antibiotics or antibiotics prescribed for yourself for another illness.

When taking antibiotics, be sure that you take all of the medication prescribed. Symptoms such as fever, general malaise (feeling bad) or foul, cloudy urine may be relieved immediately after the first doses. But, if the antibiotic is not taken as the doctor orders, the bacteria may be weakened but not destroyed. This sets up resistance for the antibiotic and further treatment may be difficult.

With some antibiotics, special precautions need to be observed in regard to food. For example, some should be taken on an empty stomach, some with food, some a certain time before or after meals. Check with your doctor or pharmacist for the specific instructions for the antibiotic prescribed.

Some antibiotics will make you more sensitive to the sun. The result is severe sunburn after very little exposure to the sun. Antibiotics will also block the action of oral birth control pills. Always use alternate birth control methods while taking antibiotics. Check with your pharmacist to determine if any of these special precautions apply.

Bladder Medications

 Ditropan (oxybutynin)  Detrol LA (tolterodine extended release)  Detrol (tolterodine extended release)  Ditropan XL (oxybutynin extended release)  Vesicare (solifenacin)  Enablex (darifenacin)

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Common bladder medications:

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Why is it prescribed?  To relax the bladder and help it hold more urine. How should you take this medication?  Follow the instructions given by your doctor. What side effects are possible?  Drowsiness, dizziness, blurred vision, dry mouth, constipation Precautions

If drowsiness or blurred vision occurs while taking any of the above medications, do not operate a motor vehicle.

Be careful of the amount of alcohol you drink while taking these medications as the combination of alcohol and bladder medications can cause extreme drowsiness.

Bladder medications slow down the activity of the intestines as well as the bladder, so you may experience constipation when taking these medications. You can counteract this by increasing the fiber in your diet, drinking more fluids or increasing the number of stool softeners you take.

Low Blood Pressure

Common medication:  ProAmatine (midodrine) Why is it prescribed?  To help raise blood pressure before getting up and out of bed What should you know about this medication?  Need to take this medication about 30 minutes before you plan on getting up.  Dizziness may occur. You may need help getting up and ambulating.  As your body adjusts to the changes from your injury, these medications will be tapered and discontinued. For this reason these medications are seldom continued after discharge from the hospital.

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Some possible side effects:  Tremors; anxiety; anorexia; nausea/vomiting

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Blood Thinners

There are two types of blood thinners. The first type is given by injection the second type is given orally.

Injectable blood thinners:

Common injectable blood thinners:

 Enoxaparin (Lovenox)  Dalteparin (Fragmin) Why is it prescribed?  To thin the blood  To prevent blood clots from forming soon after spinal cord injury. What should you know about this medication?  You will probably only be on an injectable blood thinner for about 1 week to 3 months  It is commonly given by a shot in the fat layer of your abdomen  Notify your physician or pharmacist if you are allergic to heparin, beef or pork prior to taking this medication.

Oral blood thinners:

Common oral blood thinners:  Coumadin® (warfarin) Why is it prescribed?  To thin the blood and prevent clots from forming.  For people who have shown a tendency toward blood clot formation.

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What should you know about this medication?  The generic warfarin may not be equivalent to brand name Coumadin®. Always check with your physician first before taking a generic brand of this medication.  Take at the same time every day.  Use a soft toothbrush as your gums may bleed.  Report any sign of bleeding to your doctor (e.g. blood in stools or urine, excessive nose bleeds, coughing up blood, severe menstrual bleeding).  This drug may cause you to bruise easily  Check with your doctor, pharmacist or dietician for interactions with common foods.  Always carry a card or medication alert bracelet/necklace with you while on this medication to alert medical personnel that you are on a blood thinner. E9 Craig Hospital


 Be certain to notify all physicians, nurses, dentists, pharmacists, therapists and emergency personnel that you are on a blood thinner prior to all treatments, exams, and new prescriptions  Ask your pharmacist or physician of possible interactions prior to taking any over-the-counter medications and herbal medications/ supplements. There are several herbal medications and supplements that may cause life-threatening reactions when taken with Coumadin®.  Inform your physician if you plan to become pregnant or are pregnant while on this medication  If you forget to take a tablet, tell your doctor. Take the missed dose as soon as possible on the same day, but DO NOT take a double dose the next day to make up for the missed dose.  Drinking alcoholic beverages or medications containing alcohol may change your clotting time

Bowel Medications

Anesthetic Creams Common medications:  Dibucaine®  Anusol®

Why is it prescribed?  To prevent autonomic dysreflexia  To decrease discomfort and pain during a bowel program

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What should you know about this medication?  It should be applied to the rectum 5-10 minutes before inserting the suppository, doing digital stimulation or manual removal.

Bulk Formers

Common medications:

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 Citrucel®  Fiber-con®  Metamucil®  Benefiber® Why is it prescribed?  To soften the stool and increase the size of stool  To increase the movements of the bowels What should you know about this medication?


 It will cause constipation if you do not drink enough fluids

FLEETS® Enema

Why is it prescribed?  To increase the movement of the bowels  To clean out the bowels in preparation for a surgical procedure What should you know about this medication?  It should only be used if you are very constipated and only as prescribed by a doctor  It should not be used repeatedly as the bowel can become dependent and stop working on its “own”

Stool Softeners

Common medications:  Colace®  Peri-Colace®  Surfak®

Why is it prescribed?  To soften the stool, allowing for easier movement What should you know about this medication?  Drink plenty of fluids  If stool becomes too soft, decrease number of stool softener pills gradually  prevents, not treats constipation  Peri-Colace® also contains a laxative. Be aware of which product you are buying

Magic Bullet and Dulcolax Suppositories

Dulcolax® suppositories are a petroleum based bisacodyl suppository and Magic Bullets are a water based bisacodyl suppository.

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Why is it prescribed?  To stimulate the action of the bowel

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What should you know about this medication?  It is used to help start the bowel program. You may still have to use mechanical stimulation to empty the bowels.  Be sure the suppository is placed against the rectal wall or it won’t work.  Be sure to remove any stool that is in the rectum before inserting the suppository.  Dulcolax suppositories may cause cramping.  Magic Bullets are not sold in any drug store. Either the pharmacist or the patient must order this product directly from the manufacturing company. To order call Concepts in Confidence at 1-800-822-4050.  A copy of a Magic Bullet order form is below.

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Hemmorhoidal Agents

Common agents:

Why is it prescribed?

 Preparation H suppositories  Preparation H ointment  Preparation H cream  Anusol suppository  Anusol cream  Anusol HC cream  Anusol HC suppository

 To provide relief for the symptoms associated with hemorrhoids What should I know about this medication?  Every product is used differently so be sure to ask you doctor or pharmacist about specific directions.  Some products for external use only are not to be inserted into the rectum. Apply external products sparingly after a bowl movement. If possible wash, rinse and dry the area before use.  If symptoms do not improve in 7 days, or if bleeding, seepage, protrusion, or pain occurs call your doctor.

Pain Medications

Acetaminaphen (Tylenol; APAP)

Why is it prescribed?  To manage mild to moderate pain

What should you know about this medication?

 Liver toxicity may develop at large doses (more than 4000 mg per 24 day) or when combined with frequent alcohol use  It is frequently combined with narcotic analgesics to treat moderate to severe pain

Common agents:  Celecoxib (Celebrex)  Ibuprofen (Advil; Motrin)  Naproxen (Naprosyn)  Rofecoxib (Vioxx)

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Nonsteroidal Anti-inflammatory Drugs (NSAIDS) ©

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Why is it prescribed?  To manage mild to moderate pain What should you know about this medication?  Stomach bleeding can occur with chronic therapy (not as often with Celebrex), especially when combined with alcohol.  These medications may interact with Coumadin to cause an increased chance of bleeding  Take with food to minimize stomach upset

Tramadol (Ultram)

Why is it prescribed?  To manage moderate pain

Narcotic Analgesics

Common agents:

Why is it prescribed?

 Codeine (Tylenol #3)  Fentanyl (Duragesic Patch)  Hydrocodone (Vicodin; Lortab; Vicoprofen)  Hydromorphone (Dilaudid)  Meperidine (Demerol)  Methadone  Morphine (Roxanol; MS Contin)  Oxycodone (Percocet; Roxicodone; Oxycontin; Percodan)  Propoxyphene (Darvocet; Darvon)

 To relieve or manage moderate to severe acute and chronic pain  Usually not used to treat neurogenic pain.

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What should you know about this medication?  May cause respiratory depression when combined with alcohol  May cause dizziness or drowsiness, especially when combined with alcohol  May cause constipation  Dose should not exceed 400 mg (8 tablets) per day

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What should you know about this medication?  May cause respiratory depression at excessive doses or when combined with alcohol or other CNS depressants  May cause constipation  Depending on the narcotic prescribed, a prescription will have either 0 refills or a maximum of 5 refills  Tolerance to the pain-relieving effect may develop from continuous use, and the dose may have to be increased.  Drug abuse and dependence may develop if narcotics are used inappropriately.  May cause drowsiness or dizziness, especially when combined with alcohol. Use caution if driving or performing other tasks requiring alertness, coordination or physical dexterity.  May cause orthostatic hypotension  May cause constipation

Gabapentin (Neurontin)

Why is it prescribed?

 To manage neurogenic pain  To manage seizures

What should you know about this medication?

 Not effective for other kinds of pain  May cause dizziness or drowsiness, especially when combined with alcohol  You must NOT stop taking this medication without the direction of your doctor. The dosage must be decreased slowly.

Pregabalin (Lyrica)

Why is it prescribed?  To manage neurogenic pain  To manage seizures

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What should you know about this medication?  Not effective for other kinds of pain  May cause dizziness or drowsiness, especially when combined with alcohol  You must NOT stop taking this medication without the direction of your doctor. The dosage must be decreased slowly.  A prescription for Lyrica will have a maximum of 5 refills

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Serotonin and Norepinephrine Reuptake Inhibitor Antidepressants

Common medications:

 Duloxetine (Cymbalta)  Venlafaxine (Effexor, Effexor XR) Why is it prescribed?  To manage neurogenic pain  To treat depression What should you know about this medication?  For some children, teenagers, and young adults, this medicine can increase thoughts of suicide. Tell your doctor immediately if this occurs.  May cause drowsiness, insomnia, dizziness, and/or nausea  It may take a week or two before effects of the medication are observed  You must NOT stop taking these medication without the direction of your doctor. The dosage must be decreased slowly.

Tricyclic Antidepressants

Common medications:  Amitriptyline (Elavil)  Nortriptyline (Pamelor) Why is it prescribed?  To manage neurogenic pain  To treat depression at higher doses

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What should you know about this medication?  Not effective for other kinds of pain  May cause dizziness or drowsiness, especially when combined with alcohol  May cause constipation

Spasticity Medications

Baclofen (Lioresal)

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Why is it prescribed?  To relax skeletal muscle to decrease spasticity To relax the external bladder sphincter to allow urine to pass when E 16  bladder contracts


What should you know about this medication?  You must NOT stop taking this medication without the direction of your doctor. The dosage must be decreased slowly.  If discontinued abruptly, you will experience hallucinations, increased spasticity, and/or rapid heart beat.  Avoid drinking alcohol  May cause dizziness, drowsiness, tiredness, and weakness.

Clonazepam (Klonopin)

Why is it prescribed?  To reduce spasticity  To decrease anxiety What you should know about this medication?  May cause drowsiness, dizziness, decreased alertness and constipation.  Possible to become dependent.  Do not discontinue quickly after long-term use.  Notify physician if you have glaucoma prior to starting medication.  Regular routine eye exams are recommended while on this medication  A prescription for Klonopin will have a maximum of 5 refills.

Dantrium

Why is it prescribed?  To reduce spasticity

What you should know about this medication?

Diazepam (Valium)

 This drug can cause muscle weakness or liver damage.  May cause drowsiness, tiredness, and weakness  Avoid alcohol and over-the-counter medications

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Why is it prescribed?  To reduce spasticity  To decrease anxiety

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What should you know about this medication?

 May cause tiredness, decreased alertness and possible dependence.  A prescription for Valium will have a maximum of 5 refills.

Stomach Medications

H2 Blockers

Common Medications:

Why is it prescribed?

 Pepcid (famotidine)  Tagamet (cimetidine)  Zantac (ranitidine)

 To treat stomach ulcers  To treat heartburn

What should I know about this medication?

 This medication may cause drowsiness. Avoid driving, operating machinery, and other hazardous activities until stabilized on this medication.  Take medication for entire time prescribed  Do not take antacids (Maalox, Mylanta, Gaviscon) within an hour of taking this medication.

Proton Pump Inhibitors

Common medications:

 Prevacid (omeprazole)  Prilosec (lansoprazole)  Aciphex (rabeprazole)

Why is it prescribed?

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 To treat stomach ulcers  To treat heartburn

What should you know about this medication?

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 May cause headache, dizziness, and diarrhea. Notify your physician if diarrhea is severe.  May cause low blood sugar level. Avoid the use of alcohol, aspirin, and NSAIDS E 18 


Herbal Medications and Dietary Supplements:

For thousands of years, people have used herbs to try to improve their health or treat their ailments. Since we know many medical conditions are related to a person’s diet, many people also eat or drink certain foods to try to control disease and feel better. Stores everywhere sell herbs and special diet products and claim they work for a variety of reasons. Some herbs have been scientifically shown to be of benefit, yet many of the claims for herbs and dietary supplements have not been fully tested. Claims about how well they treat medical conditions are yet not known. Using these products may help you feel better, however, they also may affect the treatment given by your doctors and nurses. So it is important that you discuss with your doctor, nurses and pharmacist any herbs or dietary supplements you are taking or thinking about taking.

What Are Herbs and Diet Supplements?

Most herbs and supplements are natural products often made from plants. People eat or drink these products to try to improve their health. People buy them ‘over the counter’ in health food stores, supermarkets and drug stores. This means you do not need a prescription from a doctor to buy them. Some still ‘look’ natural as leaves, bark, fruit, stems or flowers. Others are processed and made into tablets, capsules, and gelcaps.

Why is This Information Important to Me?

 Herbs and dietary supplements may not be safe even though they come from natural sources.  They may not work the way they claim to. Many have not been tested in a scientific way.  They may interact with your other medications and treatments. Sometimes herbs or supplements are combined together in one product. This can complicate how they interact.  They may be very expensive. There may be a lot of cost for something that really isn’t working.

What You Need to Know:

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 Improving your health is an important first step. Be aware that there are many treatment options available, but you need to understand how the treatment works.

 Know your current medications and their purpose. All medicines and remedies you use should be discussed. Talk with your health care providers about any herbs or supplements you are considering. They may have new information on how these herbs and dietary supplements may interact with other medications. E 19


 Just because it’s natural doesn’t mean it’s safe. Many powerful drugs come from natural sources, but many natural things are not safe. If some one says “It’s OK, it’s natural,” remember a snake bite is natural too.  Herbs and other dietary supplements might affect other ways of treating your condition. Gingko biloba, one of the more commonly used herbs, for example, may increase your risk of bleeding since it interferes with blood clotting. Relaxants like Kava-Kava may increase the effect of sedatives used before surgery.  Many herbs and supplements haven’t been studied in a scientific manner. More and more research is now being done on these products, however, many products that you can buy in health food stores have not been scientifically tested at all. The National Institutes of Health and the National Center on Complementary and Alternative Medicine are becoming more involved in strict research activities testing the effects of green tea, saw palmetto extract, melatonin, Ginkgo, shark cartilage, St. John’s Wort and other herbs.  Herbs and dietary supplements are not regulated or controlled by government agencies like all other drugs and medications. Claims of how well they work and what conditions they help do not have to be proven. The purity of the product also does not have to be tested or meet high standards of care.  Ask questions. Talk with your health care team, more and more information is becoming available to the general public and health care professionals are more prepared than ever to help with your questions. Be open and talk things over, you will be better served and cared for if you do.

Going Home

Things to know about when leaving Craig Hospital:

Take the medications your doctor has ordered exactly as they are prescribed. Always check with your doctor if you feel you need to increase or decrease the dose.

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 You will receive a 7-day supply for current medications so that you will have time to find a pharmacy near your home to have your prescriptions filled.  Prescriptions will also be sent home with you for the medications you need to continue.  DO NOT wait until of the end of the 7-day period to have your medications filled. Check with your pharmacy as soon as possible to be sure they can fill your medication requests. Some medications may have to be ordered from a distance.  Use one pharmacy for all your medication. Also make sure the pharmacy can maintain a computerized, complete profile of you and your medications, including allergies and drug interactions. E 20


 A medication organizer is often helpful to keep your medications organized. You may request a box from the Craig pharmacy before you are discharged.  BE CERTAIN to continue taking all your medications as prescribed once you are discharged. Call your Craig Hospital doctor if you have any questions or concerns about your medication once you are home.

Additional Resources

Brochures Available from Craig Hospital Research Department:

 Alcohol Abuse  Cholesterol  Diabetes  Medications  Osteoporosis  Spasticity  Interacting with Your Doctor  You and Your Doc: Rights and Responsibilities

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303-789-8000

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Nutrition

 Why is Nutrition Important?.................................................................3 n Introduction  What are your Nutritional Needs?......................................................4 n What is a Good Weight for Me? n How Many Calories Do I Need? n What Are My Nutritional Needs to Help Maintain Healthy Skin? n How Can I Maintain My Bowel Program When I Go Home?  How Can You Achieve Your Goals......................................................5 n What Do I Eat So I Can Have a Balanced Diet? n How Can I Get More Fiber in my Diet? n Drink the Right Amount of Fluids  Make Nutrition a Priority.........................................................................8  References...................................................................................................9

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Why is Nutrition Important?

Following spinal cord injury, nutrition plays a vital role in recovery and rehabilitation. Excellent nutrition can promote a stronger immune system and better overall health, which can help optimize recovery.

In the days and weeks following injury, focus is on ensuring that patients get adequate nutrition. At this time, eating is the farthest from your mind. Once you were over your initial shock of your injury and feeling better, we started discussing healthy eating and new or future nutritional concerns.

Eating a balanced diet can support the following:

 Improvement of overall wellness  Achievement and maintenance of a healthy weight  Regulation of bowel function  Prevention of skin breakdown  Prevention of deconditioning

What are your Nutritional Concerns? What is a Good Weight for Me? After spinal cord injury it is very easy to gain weight. By now you are well aware of the impact of excess weight on transfers, endurance and risk for pressure sores. Spinal cord injury patients are also at higher risk of developing diabetes and cardio-vascular disease, especially for those who are overweight. Maintaining your weight within your ideal weight range can help reduce the effect of excess weight. Letting yourself get too thin is a concern also, because you lose the “padding” between your bones and your skin, increasing the pressure on your skin.

Keep in mind that your body does not need as many calories as it did before injury because your metabolism which is the energy that your body needs to function has decreased due to muscle loss. Calorie needs and the amount of muscle loss is dependent upon the level of spinal cord injury. Your metabolism will continue to fall with age and with less activity. For these reasons your ideal body weight has also changed.

If you do not have access to a scale, you can keep track of your progress by measuring various body sites. Use a cloth measuring tape and record your waist (on and below ribs), thigh, neck, and/or mid arm measurements. Recheck these measure- ments every 2-3 months to monitor for changes.

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A rule of thumb suggests that,  For a person with paraplegia or in a manual wheelchair the ideal body weight is about 5-10% less than the weight found in most height-and-weight charts for non-wheelchair bound people.  For those with quadriplegia or using a power wheelchair the ideal body weight is about 10-15% less. How many calories do I need?

Many things affect how many calories that you may need. The number of calories needed is determined by looking at the level of spinal cord injury, your age, physical activity and chronic illness. In general, daily calorie needs for those with paraplegia or in a manual wheelchair is approximately 12-14 calories per pound. Daily calorie needs for those with quadriplegia or in a power wheelchair is approximately 11 to 14 calories per pound.

What are my nutritional needs to help maintain healthy skin? During your rehabilitation in the hospital, you may have been encouraged to eat more protein and take extra vitamins and minerals. When you go home, if your skin is intact and well healed you do not need any more protein or vitamins and minerals than the general population. You do however, need to eat a well-balanced diet that includes good food sources of protein, zinc and vitamins A and C in your diet every day. (3) See “How to Achieve Your Goals” section for sources and recommended amounts of protein. Also, drink at least 2-3 liters of water per day to give your body the moisture that it needs to maintain healthy skin. Good sources of zinc  Oysters contain more zinc per serving than any other food, but red meat and poultry provide the majority of zinc in the American diet.  Other good food sources include beans, nuts, certain seafood, whole grains, fortified breakfast cereals, and dairy products. Zinc absorption is greater from a diet high in animal protein than a diet rich in plant proteins.

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Good sources of Vitamins A and C

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 Good food sources for vitamin A are: fish oil, liver (pork, lamb, chicken, turkey or beef), eggs, broccoli, butter and orange or yellow vegetables or fruits.  Good food sources for vitamin C include: parsley, broccoli, bell pepper, strawberries, oranges, lemon juice, papaya, cauliflower, kale, mustard greens, and brussels sprouts.


How can I maintain my bowel program when I go home?

A high fiber diet is important for a successful bowel program. It is recommended that 20-35 grams of dietary fiber are consumed daily. Since fiber is the part of the plant that is not digested by the body, it goes through the digestive system absorbing water and making elimination much easier. This is the reason why we need to drink plenty of fluids. Eating too much fiber and not drinking enough fluids can cause constipation. See the “How Can I Get More Fiber in My Diet?” section to help you get the fiber that you need each day.

How can you achieve your Goals?

What do I eat so that I have a balanced diet?

Nutrients are the substances in food that keep our body healthy. The only way to get the nutrients that we need is to eat the right amounts of a variety of foods.

Focus on fruits  Eat a variety of fruits—try to get a mixture of colors each day  Your goal should be 2 cups per day  Example of 2 cups: 1 small banana, 1 large orange, and 1/4 cup of dried apricots or peaches Vary your veggies  Eat more dark green, orange veggies, beans and peas  Your goal should be 2 ½ cups per day  Examples of 2 ½ cups: ½ cup cooked broccoli, 1 cup carrot sticks, ½ cup cooked pinto beans and 1 cup dark green leafy lettuce Get your calcium-rich foods  Go low-fat or fat free when you choose milk products  Your goal should be 3 cups per day  Examples of 3 cups: 1 cup non-fat milk or reduced fat milk, 6-8oz cup of low-fat yogurt and 1 ½ ounces(oz.) of cheese  If you don’t or can’t consume milk, choose lactose-free milk products and/or calcium-fortified foods and beverages ©

Make half your grains “whole grain”  Look to see that grains such as wheat, rice, oats, or corn are referred to as “whole” in the list of ingredients  Half (or 3 oz.) of your grains should be from whole grains  Your goal should be 6 oz. of grains per day  Examples of 6 oz.: 1 slice of whole wheat bread, ½ cup of high fiber F 5 Craig Hospital


breakfast cereal, ½ cup of whole grain cooked rice, or pasta, 6 squares graham crackers and 1 whole wheat bun (counts as 2 oz.)

Go lean with protein

 Choose lean meats and poultry  Bake it, broil it, or grill it  Vary your protein choices—with more fish, beans, peas, nuts, and seeds  Your goal should be 5 ½ oz. per day  Examples of 5 ½ ounces: 2 oz. of turkey breast on a sandwich for lunch and 3 oz. of grilled salmon or halibut for dinner, and ½ oz. of seeds and nuts on a salad  Remember that eating adequate amounts of protein will help you maintain good skin

How Can I Get More Fiber in My Diet?

 Eat whole grains more often. Instead of: Eat: White bread Whole grain bread White rice Brown rice Pasta Whole wheat pasta Potato chips Popcorn French fries Baked potato with skin Donut Bran muffin Sweetened cereals Bran cereal not made from whole grain  Eat at least 3 – 5 servings of vegetables and 2 – 4 servings of fruits every day

More Examples of High Fiber Foods

Apricots Peas Prunes Artichokes Beans Nuts/Seeds

Plums Dates Apples

Strawberries Pears Asparagus Raisins High Fiber Cereals Squash

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 Eat dried beans or peas (split peas, kidney beans, garbanzo beans) 2 to 3 times a week.

Tips When Adding Fiber to Your Diet

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 Make small changes in your diet over a period of time to help prevent bloating and gas.  Start with one of the changes above, and then wait several days to a week before making another. F 6  If one change doesn’t seem to work for you, try another


 Drink 2-3 liters of water every day to help prevent constipation.  If you are unable to make diet changes, try a fiber supplement. Be aware of how much fiber your supplement is providing. For example, some fiber supplements provide almost 10 grams of fiber in 3 tbsp. You’ll still need 10-15 grams of fiber from your diet to meet the recommended level. Drink the right kind and the right amount of fluids. Water is often over looked as a nutrient. Our bodies are more than 70% water. You can become dehydrated very easily if you are not drinking enough. Dehydration can also increase risk of bladder stones, urinary tract infections and constipation. It is recommended that you consume approximately 2-3 liters of water throughout the day to stay hydrated. You can drink other non-caffeinated beverages, but they may contain sugar and calories.

Drinks with caffeine do not help meet you water intake needs, in fact, they cause you to lose as much fluid as you are taking in. Watch the color of your urine to make sure that you are drinking enough (pale yellow color is ideal).

Thirst is not a good sign of dehydration. Isn’t that strange? Many people never feel ‘thirsty’ when they are low on water. So, keep something to drink with you all the time, especially when it is hot outside.

Remember, if you are trying to lose weight, sugar sweetened beverages and fruit juices add extra calories to your daily diet that you don’t need.

Note: If you are on the intermittent catheterization program, your doctor or nurse will help you determine how much fluid you need each day.

Make Nutrition a Priority

Making nutrition a priority can be difficult. Take a good look at what you are eating and see if there are any nutrition goals that you would want to set for yourself to be healthier and feel better. Over time, these small changes will add up and will help you to prevent complications such as skin breakdown, heart disease and obesity.

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 For additional nutrition information go to website:  The Dietary Guidelines go to: www.health.gov/dietaryguidelines/ www.nal.usda.gov

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References:

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Pain Management

 Pain After Injury........................................................................................3  Types of Pain.............................................................................................5 n Mechanical n Referred n Central Deafferent n Root n Cyst (Syrinx)  Measuring Pain..........................................................................................7  Treatment of Pain After Injury.............................................................8  Potential Concerns About Medications..........................................11  Other Pain Relief Options....................................................................12  Guidelines for Pain Relief.....................................................................14  Resources and References..................................................................15

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Pain after Injury

Many individuals feel some type of pain after a catastrophic injury. Severe pain is a problem for about one in three persons with major injuries. Pain can interfere with your ability to carry out your daily routines, social activities, and greatly affect your quality of life.

There are numerous causes of pain some examples are broken bones, injured joints and muscles, or damaged nerves. Movement of muscles and joints after periods of non-use also can cause pain. In persons with spinal cord injury (SCI) or brain injury (BI), there may also be changes in the way the body feels pain because of changes in the nervous system. Some persons with SCI or BI feel pain in places where they have abnormal or even absent sensation or feeling.

Pain is not a diagnosis; rather it is a symptom. Being a symptom, it may be a sign that something is wrong, but other times it may be a normal response to changes in the body. Pain may be present from the onset of injury or may slowly develop over time. Your health care team can help you figure out what is causing your pain and, more importantly, what can be done to treat it.

Certain conditions may make your pain worse, including numerous medical issues such as infection, bladder, bowel, or skin problems, as well as other factors such as over-exertion, physical or emotional fatigue, frustration, changes in weather, or even smoking.

You may not tell anyone about your pain or the things that make it worse, for fear others will think you are "crazy" or "weak". Discussing your pain with your healthcare team can help determine if it's a signal that something is wrong, or if it's a "normal" symptom. Communicating with your healthcare team is the first step in understanding the different causes of pain and the different treatment options.

As a patient at Craig Hospital, you can expect:  Your treatment team will take your reports of pain seriously.  Information about pain and ways to help with your pain.  A concerned staff committed to pain prevention and management.  Health care professionals who respond to reports of pain. © Craig Hospital

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Your Responsibilities As a patient at Craig Hospital, we expect that you will:  Ask your health care team what to expect about pain and pain management.  Discuss pain relief options with your health care team.  Work with your health care team to develop a pain management plan.  Help your health care team assess your pain.  Tell your health care team when the pain is not relieved  Always talk with your doctor, nurse or pharmacist about any worries you may have about taking pain medication.

Pain RELIEF is IMPORTANT!

Pain can cause the following signs and symptoms:

Pain can interfere with the following:

Tell Your Team About:

 Tiredness  Depression  Anger  Worry  Loneliness  Stress  Poor Appetite  Increased alcohol and/ or drug use

 Daily activities  Interest in work and hobbies  Sleeping  Sexual activity  Eating  Spending time with friends and family  Enjoying life  Working on your rehab goals

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 Where do you feel pain?  What does it feel like (sharp, dull, burning, electrical)?  How long have you had the pain?  What do you do to make it better?  What makes it worse?  What medications or treatments are helpful? What medications or G 4 treatments have not been helpful?


Types of Pain

There are two types of pain - acute pain and chronic pain.

Acute pain

Acute pain typically begins suddenly. The cause of the pain is usually from physical damage to the body or from a disease process. Acute pain is a danger signal and you should discuss it with your team to be sure it is evaluated properly. Remember that your body’s ability to report pain needs to be addressed. Acute pain usually gets better with or without intervention, but may take several months to completely be resolved.

Chronic pain

When pain does not go away, and lasts longer than several weeks to months, it is usually considered to be chronic. However, this does not mean that there is no hope for improvement. There can be many causes of chronic pain in SCI and BI, and there are many different treatment strategies that your team can offer. Chronic pain is difficult to completely eliminate, but often significant reduction in the pain is possible. While chronic pain is usually not dangerous, it is important that you notify your team if your chronic pain suddenly worsens.

Types of Pain after Injury There are several types of pain commonly felt by individuals with SCI or BI. Some types of pain involve things that might cause any person to have pain. Other types of pain involve things that are typically only found in people who have had an injury to the brain, spinal cord or other parts of the nervous system. Your team can help you understand these different types of pain and what can be done about it.

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Mechanical Pain

Mechanical pain usually involves areas of normal sensation but not necessarily areas of normal function. This type of pain can occur suddenly or have a delayed onset. Symptoms can vary and can range from dull to sharp or achy to throbbing. It usually involves some type of physical cause such as physical injury to the muscle, joint or bone. This type of pain can happen to anyone. However, spasticity, a condition where the muscles have a difficult time relaxing because of SCI or BI, is also a common cause of mechanical pain.

Referred Pain

Referred pain can occur in persons with or without nervous system injury and it can be a common source of pain especially in SCI. One example is when a person has a heart attack, they may have jaw numbness or pain in their left shoulder or arm. In SCI, referred pain may be a sign that an area below your level of normal sensation is having a problem. One common example in SCI includes shoulder pain as a result of gallbladder disease. Referred pain can also happen in BI but is less common. Central Deafferent Pain In persons with SCI, central deafferent pain can be quite perplexing. You feel pain where you have abnormal or even absent sensation. Common descriptions include a “pins and needles” feeling, electrical, burning, numbness, or shooting pain below your level of injury. The pain may not develop for weeks or months, if at all. It may also fluctuate or change. It may be constant and may or may not change with physical activity. At best, it is bothersome. At worst, it may limit your ability to fully function in life. Doctors believe the cause of central deafferent pain may be changes in the functioning of spinal nerves following SCI and is not typically a sign that the injury is getting worse. People with a BI sometimes can experience a similar pain syndrome, though the cause is related to injuries of the brain instead of the spinal nerves. People with this type of pain may be very sensitive to light touch or other stimulation that might not be ordinarily considered painful.

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Root Pain Root pain (also known as junctional pain) relates to the distinct pattern of pain with SCI, where pain is felt at, or just below, the level of injury. It may begin days to weeks after injury and may feel like sharp or burning pain near the area where your normal feeling stops. This type of pain is similar to central deafferent pain in that physical activity may G 6 not affect it, and that the area(s) involved may be overly sensitive to


touch, also known as hypersensitivity. It is believed that the damage to the nerve roots at the level of injury causes this type of pain. Again, this condition does not necessarily indicate that there is worsening of the injury

Cyst (Syrinx) Pain

Measuring the Pain You Feel

When the spinal cord is injured, sometimes a fluid filled cavity can form within the spinal cord itself, and this is called a cyst or syrinx. The cyst can sometimes expand up or down the spinal cord and can cause several different symptoms including sensory loss, weakness, and/or pain. Symptoms may not occur for months or years and may also develop very slowly. While this condition is not common and only occurs in SCI it can be very serious and is another reason why it is important that discuss all pain issues with your team.

Whether you have a brain injury or a spinal cord injury, we know that your pain is very real. Most people with spinal cord or brain injury are able to tell the doctors and nurses when they have pain and how bad it feels.

Family and staff members need to be very observant of someone who is not able to communicate on their own and watch for signs that may indicate pain. Changes in vital signs, such as an increase in heart rate or blood pressure or the rate of breathing may indicate someone is in pain. Changes in behavior such as restlessness, moaning or grimacing as well as increased anxiety, irritability or agitation may also be a response to increased pain.

A pain scale helps you rate pain intensity. At Craig Hospital, your nurses will be asking you to rate your pain based on a 0 to 10 scale. A rating of 0 means no pain, and 10 is the worst pain possible. Rate the pain every few hours. You may feel pain even with medications or treatments. Tell your doctor or nurse if the pain is not reduced. Be sure to mention if the pain suddenly increases or changes.

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Pain Scale

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Treatment of Pain after Injury

Treatments vary, depending on the type of pain. While research continues in pain treatment, no significant data proves one method as the standard treatment for pain control in every individual or for every situation.

Acute Pain Treatment

Acute pain usually responds well to treatment involving a combination of strategies, including medications, physical treatments, as well as counseling. Mental focus involves resolution or elimination of pain and ways to prevent the pain from happening again. For this type of pain, treatment is usually “after-the- fact”; meaning that you first report the symptoms before something is done about it.

Chronic Pain Treatment Chronic pain can be very difficult to treat, and the multidisciplinary team approach is very important. It is very rare that a single strategy can effectively treat chronic pain, regardless of the cause, and it is very important that you work with each member of your team. Unfortunately, when pain becomes chronic, realistic goals typically involve reduction of pain and adaptation to pain, as opposed to complete elimination of pain. Your team may recommend some unusual medications and/or techniques, and it is important that you keep an open mind about different treatment strategies.

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Methods for Treating Pain Since pain can have so many different causes, there is no single way to treat it, whether it is acute or chronic. Because SCI and BI can also have specific types of pain syndromes not normally present in the general population, it is very important that your team works with you to provide information about your type(s) of pain. Medications are just part of the solution, and your doctor, pharmacist and nurse can help explain the pros and cons of each one. Your therapists will also have strategies that do not involve medications but may be just as (or more) effective than any medication. A psychologist or clergymen are also very important people in addressing your pain, especially when it is chronic in nature. Understanding your emotions and learning about different types of adaptation strategies are a critical part of your treatment. Your healthcare team can help you explore alternative options such as massage therapy and acupuncture if you are interested.

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Medications There are many different medications available to treat pain. Some are more familiar than others, and some may sound very unusual. All medications have potential side effects some of, which are more serious than others, and many medications may interact with each other. You need to tell your doctor as many specifics as possible so that he or she can choose the most appropriate medication(s) for you. All have shown some success in reducing pain, but again, none do so completely in every instance. Some of the side effects of these medications can be serious. Your doctor must closely watch your treatment. Also it is important that you keep an open mind about medications, especially since many medications are used “off-label,” meaning that information you read from a drug manual or the internet may not be the only use of that medication.

Your doctor is just as concerned about side effects as you are and will try to avoid medications that have many side effects or interactions with other medications. It is very important that you take only what your doctor or nurse recommends, as additional medications, including herbal or over-the-counter (OTC), may have significant interactions with your prescription medications. You will want to discuss the use of herbal remedies with your doctor.

Non-Steroidal Anti-Inflammatory Drugs (also known as NSAIDS) Aspirin, Ibuprofen (Motrin, Advil), Naproxen, Anaprox (Aleve), Ketorolac (Toradol), Indomethacin (Indocin), Celecoxib (Celebrex), Rofecoxib (Vioxx).

NSAIDs have been used for many years with great success in treating various types of pain. They come in many forms, for example, pills, liquids, suppositories, and injections. Some are over-the-counter (OTC), and others are prescription only. Common risks include stomach upset (including ulcers and bleeding), kidney problems, allergic skin and breathing reactions and bleeding problems. They all have slightly different properties and potential side effects, and you should discuss with your doctor if this type of medication is safe for you.

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Acetaminophen  Better known as Tylenol, acetaminophen (APAP) is also a very effective pain medication and typically has fewer side effects than most other medications. However, in very high doses (particularly over 4,000mg per day) it can cause liver damage and should never be mixed with alcohol.  It is commonly found in combination with other pain medications such as APAP/Oxycodone (Percocet) and APAP/Hydrocodone (Lortab). G9 Craig Hospital


Narcotics (including combination medications) APAP/Codeine (Tylenol #3), APAP/hydrocodone (Lortab, Vicodin), APAP/oxycodone (Percocet), fentanyl (Duragesic), hydromorphone (Diluadid), Methadone, Morphine, Oxycodone  This class of medications, also known as opioids, includes a large number of medications with varying degrees of pain relief, as well as variable side effects. They are commonly combined with acetaminophen (APAP) or NSAIDs.  Common side effects include confusion, fatigue, vomiting, itching, constipation, and bladder weakness (urinary retention). They can also cause lowered blood pressure and may diminish the body’s ability to breathe.  This class of medications always requires a prescription and may become habit forming. After long periods of use, your body’s response to narcotics may decrease, you may find that your pain continues to increase despite higher doses. However, your body is likely to have continued side effects that will worsen with increased dosages. You may also develop dependency on these medications, and abrupt discontinuation can cause withdrawal symptoms.  Narcotics are typically not effective for chronic pain but are usually very effective for acute pain. Dependency, or addiction, is very rare when narcotics are used properly. Your doctor can help you determine which, if any, of these medications might be helpful for you. Muscle Relaxants / Anti-Spasticity Medications  Diazepam (Valium), baclofen (Lioresal), carisoprodol (Soma), cyclobenzaprine (Flexeril), metaxalone (Skelaxin), methocarbamol (Robaxin), dantrolene, (Dantrium), tizanidine (Zanaflex).  These medications fall into different categories but primarily work by causing muscle relaxation, either directly acting on the muscle or the nerve input to the muscle.  Common side effects include sedation, dry mouth, confusion, low blood pressure, decreased breathing rate, and weakness.

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Other Medication, including “Off-label” use  Tramadol (Ultram) does not fall into a specific category, and may be helpful in mild to moderate pain. Though it is not a narcotic, it carries a slight potential for dependency and should be used with caution if you are taking an anti-depressant.  An “Off-Label” use is when a medication is prescribed for purposes other than originally approved by the Federal Drug Administration G 10 (FDA).


Nevertheless, these medications can be safely prescribed by your doctor and may be very effective for pain, both acute and chronic, and particularly for pain syndromes that may occur after SCI or BI (but rarely in the general population). You should always discuss potential benefits, risks and side effects of these medications with your doctor. These medications include:  Anti-depressants, particularly tricyclic antidepressants such as amitriptyline  (Elavil) or nortriptyline (Pamelor) and desipramine (Norpramin).  Anxiolytics (also known as anti-anxiety medications), such as diazepam (Valium) and clonazepam (Klonopin) are very effective muscle relaxants which also help to reduce anxiety.  Anticonvulsants (also known as anti-seizure medications) such as Neurontin are helpful for nerve pain associated with SCI. They are often used in combination with antidepressant.  Anti-Hypertensives (blood pressure medications) such as clonidine (Catapres), which is closely related to the muscle relaxant tizanidine (Zanaflex).

Alcohol is not a medication. Alcohol is not recommended as a pain medication and can lead to alcohol abuse and other serious problems. Some medications should not be mixed with alcohol. Check with your doctor if you have questions about drinking alcohol and always read the labels of your medications.

Potential Concerns about Medications

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 I’m afraid of becoming addicted. Narcotic addiction is defined as dependence on the regular use of narcotics to satisfy physical, emotional and psychological needs rather than for medical reasons. Pain relief is a medical reason for taking narcotics. Therefore, if you take narcotics to relieve your pain, you are not an “addict,” no matter how much or how often you take narcotic medications. If you and your doctor decide that narcotics are a proper choice for your pain relief, then use them as directed. Fear of addiction is very common for people who take narcotics for pain relief. Narcotic addiction is a very emotionally charged subject. You may hear people use the term “addiction” very loosely without understanding that it means the compulsive use of habit-forming drugs for their pleasurable effects. G 11 Craig Hospital


 I don’t want to be a complainer You have the right to ask for pain relief. In fact, telling your doctor or nurse about pain is what all patients SHOULD do. The sooner they speak up, the better. It is easier to control pain in its early stages before it becomes severe.  I don’t want to lose control Most people do not lose control when they take pain medications the right way. You may feel sleepy when you first take some pain medications, but this feeling often goes away in a few days. A few people get dizzy or feel confused when they take pain medications. Tell your doctor or nurse if this happens to you. Changing your dose or type of medication usually helps solve this problem. Other Pain Relief Options Electrical Stimulation

Another type of electrical stimulation is the dorsal column stimulator or epidural stimulator. This is implanted under the skin and has proven helpful in some cases. It is a surgical procedure and is reversible.

Nerve Blocks and Surgery

Dorsal root entry zones (DREZ)

Stretching and Range of Motion Exercises

Stretching and range of motion exercises that help release muscle tension may also help relieve pain. Applying ice or heat to the affected area may help reduce swelling and pain.

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Transcutaneous electrical nerve stimulation or “TENS” has provided relief from SCI pain in some individuals. This technique involves placing electrodes on the surface of your skin and sending low levels of electrical current into your body. Doctors and physical therapists often use TENS first when addressing pain because the risks are low.

Nerve blocks refer to a drug being injected directly into the skin or spine. This method has fewer side effects than narcotics and the pain relief lasts longer. Doctors often use these treatments before neurosurgery because the risks are lower.

DREZ is a neurosurgical procedure for reducing pain in some individuals. The DREZ procedure involves thermal heating parts of the spinal cord or nerve roots thought to be the source of pain. There is a greater than 80% success rate for selected cases of paraplegia.


Therapeutic Massage Therapeutic Massage by a trained, certified massage therapist (CMT) may also help in relieving pain due to muscle tightness and muscle imbalance. Speak with your doctor if you are interested in massage therapy. Acupuncture Pain specialists in the treatment of chronic pain have used acupuncture treatments. Acupuncture treatment consists of the insertion of tiny needles into the skin at specific points. According to some experts, acupuncture works by stimulating the body’s pain control system or by blocking the flow of pain.

Psychological Treatment for Pain

While medical and surgical procedures for managing chronic pain are important, psychological approaches to coping with pain are as important. With psychological approaches, you are an active participant and can actually affect your pain by becoming more involved in the management of pain through learning coping and adaptation strategies. Don’t overlook or feel threatened by psychological support. Living with pain day after day will affect anyone’s view of themselves and the world. Working with a psychologist can help you understand this.

Other Pain Factors

There are other factors that can aggravate pain, such as depression and stress. Depression Depression can accompany pain or occur as a result of everyday living problems or coping with a spinal cord injury. Depression can magnify the pain experience and result in social isolation. Depression is best treated through counseling, either with professionals or peer counselors. Severe depression requires medication or other treatment. Successful treatment of depression can improve your ability to cope with chronic pain. Stress ©

Stress is another factor that can magnify pain. You can learn to manage stress more effectively through counseling, either individually or with a group. Psychologists can teach you techniques to help you reduce stress and tension, such as relaxation training, biofeedback, and hypnosis.

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Distraction is one of the best methods for coping with chronic pain. Keeping busy by doing enjoyable and meaningful activities, recreation, work or volunteer activities, can be a good way of distracting you from your pain. Inactivity and boredom allow you to focus more on your pain.

How you think about your pain may affect how you cope and deal with it. If you believe it is a sign that something is terribly wrong with your body, you may avoid certain activities or rely on medications. This can change your entire lifestyle.

You want to decrease your pain so you can safely participate in as many activities as possible. If you limit your activities, it may only make things worse. Consult with your doctor to find out the type and cause of your pain. Ask what you can and what you cannot do.

Pain is an invisible disability and family members may not understand your pain. Because of their concern, they may be overprotective or resent your use of medications or other treatments. Family education and counseling can be helpful.

Conclusion

Pain and its treatment can be a complicated problem. Do not try to diagnose your own pain. You may need to try several treatments before finding one, or a combination, which works for you. Start with the safest option. Often, combining several methods may work.

Ultimately, the solution may not be a cure. It may be learning new or improved skills to make the pain more tolerable and reduce the impact of pain on your quality of life.

Guidelines for Pain Relief

 Prevent the pain before it starts or gets too bad by doing some pain- relief methods on a regular schedule. If pain begins, don’t wait for it to get worse before doing something about it.

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 Learn which methods of pain relief work best for you. Vary and combine pain-relief methods. For instance, you might use a relaxation method at the same time you take medication for pain.

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 Know yourself and what you can do. Often when people are rested and alert, they can use a method that demands attention and energy. When tired, they may need to use a method that requires less effort. For example, try distraction when you are rested and alert, use hot or cold packs when you are tired. G 14


 Be open-minded and keep trying. Be willing to try different methods. Keep a record of what makes you feel better and what doesn’t help.  Try each method more than once. If it doesn’t work the first time, try it a few more times before you give up. Keep in mind what doesn’t work one day may work the next. Also, you might need help in figuring out the best way to use a certain technique. Don’t get discouraged if a certain method does not work for you. People are different, and not all methods will work for everyone.  Most important, always ask yourself: “Is the cure worse than the disease? Does pain relief allow me to do what is important to me and those I care about?” Resources  American Chronic Pain Outreach Association. PO Box 850, Rocklin, CA 95677- 0850, 1-800-533-3231  American Syringomyelia Alliance Project. An organization that provides information on syringomyelia, offers a support network, and urges research to improve existing treatments. PO Box 1586, Longview, TX 75606. 1-800-ASAP-282  Fibromyalgia Network (Newsletter). 5700 Stockdale Highway, Suite 100, Bakersfield, CA 93309. www.fmnetnews.com. 1-800-377-0282  National Headache Foundation. (Newsletter, membership) 5252 No. Western Ave. Chicago, IL, 60625. 1-800-843-2256  National Spinal Cord Injury Hotline. Peer support, referrals and information about SCI pain. 1-800-962-9629.  No More Pain. (free informational pamphlet), Pain Management Center, Fox Chase Cancer Center, 7701 Burholme Ave., Philadelphia, PA 19111, (215) 728-6900

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Range of Motion

 Range of Motion (ROM) Exercises

n Upper Extremity t Passive ROM.........................................................................3 w Shoulder w Forearm. w Wrist. w Fingers. t Self ROM. w Fingers. n Lower Extremity..........................................................................12 t Passive ROM. w Hips. w Ankles. w Heel Cord. w Toes. w Prone. t Self ROM. w Hamstrings. w Hip/Knees. w Ankles. w Prone.

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Range of Motion Upper Extremity Passive Range of Motion

I. Shoulder

A. Flexion (front raise)

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Place the person’s arm straight at his side with the thumb up. Position yourself at the side, level with the shoulder.

2. Place one hand above the elbow. Hold the person’s hand with your other hand. 3. Movement: Lift the person’s arm over the head toward the ear. Keep the elbow straight and thumb up. 4. Return the person’s arm to starting position, straight at the side.

B. Abduction (side arm raise)

1. Starting position: Place the person’s arm straight at the side with the palm up. Your hand position: Place one hand above the elbow and hold the person’s hand with your other hand. ©

Movement: Move the person’s arm away from the side around toward ear. Keep his elbow straight, the palm and the arm parallel with floor. H3 Craig Hospital

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4. Return the person’s arm to the starting position, straight at his side. C. Diagonals (arm across the body) Diagonal #1 1.

Starting position: Place the person’s arm across the body at the opposite hip.

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Your hand position: Place one hand above the elbow. Hold the person’s hand with your other hand.

3. Movement: Lift the person’s arm over the head and out to the side. Keep elbow straight with thumb down.

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Diagonal #2

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Starting position: Place the person’s arm across the body so the elbow is over the chin on the opposite side.

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Your hand position: Place one hand above the elbow. Hold the person’s hand with your other hand.

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Movement: Bring the person’s arm down and across to the same side. Rotate the hand so the thumb is near the patient’s side.


D. Rotation (turning arm in and out) 1. Starting position: Place the person’s arm to the side with his elbow bent so his fingers are pointing to the ceiling. Position yourself beside the person at the level of his elbow. 2. Your hand position: Place one hand above his elbow and hold the person’s hand with your other 3. Movement: a. Turn the person’s upper arm in so the hand moves toward the stomach. b. Turn his upper arm the hand moves away from the stomach. c. Return the person’s arm to the starting position, at the side with the elbow bent II. Forearm A. Supination and pronation (forearm turning)

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1. Starting position: Place the person’s arm on bed at his side with his elbow bent so the fingers point up towards the ceiling and his thumb points toward his shoulder. 2. Your hand position: Hold person’s hand with one hand and the arm with your other hand.

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3. Movement: a. Turn the person’s forearm so his palm faces toward him. b. Turn his forearm so his palm faces away from him. c. Return his forearm to starting position.

III. Wrist

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A. Flexion and Extension (wrist bending)

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1.

Starting position: Place the person’s arm at the side with the elbow bent so the fingers point towards the ceiling

2.

Your hand position: Hold the person’s hand with one hand and hold below the wrist with your other hand.

3. Movement: a. Bend the person’s hand backward. b. Bend his hand forward. c. Return his hand to the starting position with the fingers pointing toward ceiling.


B. Ulnar and Radial Deviation (wrist side bending) 1. Starting position: Place the person’s arm at the side with the elbow bent so the fingers point toward ceiling. 2. Your hand position: Hold person’s hand with one hand and hold below person’s wrist with your other hand. 3. Movement: a. Bend the hand sideways in the direction of the thumb. b. Bend his hand sideways towards the little finger. c. Return the hand to the starting position.

IV. Fingers A. Flexion and Extension (finger bending and straightening) 1. Starting position: Place the person’s arm at the side with the elbow bent and the fingers pointing toward the ceiling. © Craig Hospital

2. Your hand position: Place one hand palm down over back of the person’s hand and support the wrist with your other hand. H7


3. Movement: a. Help the person make a tight fist, while the wrist is bent back. b. Straighten the fingers so the hand is flat, while the wrist is bent down.

B. Abduction and Adduction (finger spreading) 1. Starting position: Place the person’s arm straight at the side with his palm up. 2. Your hand position: Hold the person’s index finger with one hand and the long finger with your other hand.

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3. Movement: a. Spread the person’s fingers apart. b. Move the fingers together.

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c. Grasp the person’s long finger and ring finger. Move them apart, then together.

d. Grasp the ring finger and little finger. Move them apart, then together.

e. Grasp ring finger and little finger, move them apart, then together.

Self-Range of Motion Fingers

A. Thumb Flexion/Extension

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Starting position: Lying on back or sitting, hand turned so that thumb is pointing straight up to the ceiling.

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2. Movement: Bend the joints of the thumbs, so that the thumb rests on the palm. Then return to the starting position, thumb is pointing to the ceiling. B. Thumb Abduction/ Adduction 1. Starting position: Lying on back or sitting, thumb facing up with thumb lying on the inside of the index finger. 2. Movement: Bring the thumb straight in toward Your body and return to the starting position.

C. Thumb Circumduction 1. Starting position: Lying on back or sitting, thumb facing up with thumb lying on the inside of index finger.

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2. Movement: Move the thumb clockwise, then counter clockwise.

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D. Opposition 1. Starting position: Lying on back or sitting, thumb pointing straight toward the ceiling.

2. Movement: Bring the tip of the thumb in contact with the index finger. Repeat with each finger.

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LOWER EXTREMITY PASSIVE RANGE OF MOTION PROGRAM

Passive range of motion or “stretching” of the legs should be performed each day. It is best if they are performed in bed but can also be performed in a power wheelchair that has been tilted back. Stretching is important for positioning in the wheelchair, bed mobility, dressing, hygiene, using the standing frame and comfort. Each stretch should be held 30 seconds to 1 minute. The entire sequence should take less than a half hour. I. HIP AND KNEE FLEXION, ANKLE DORSIFLEXION

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This stretch combines stretches at 3 joints into one movement. Cup patient’s heel in the palm of your hand and place your other hand behind the patient’s knee. Move the knee toward the patient’s chest until light resistance is felt and then move your hand from the patient’s heel to the ball of his or her foot. Push the patient’s foot up, toward his or her chest. You should see creases on the front of the ankle. Hold the stretch for 30 seconds to 1 minute. If the patient feels pain with any of these movements, back off slightly.

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II. HAMSTRING STRETCH This stretch focuses on the upper portion of the hamstring muscles. Cup patient’s heel in the palm of your hand and place your other hand on top of the patient’s thigh, near the patient’s knee. Keep patient’s leg straight and move it toward the patient’s chest until light resistance is felt. Hold the stretch for 30 seconds to 1 minute. If the patient feels pain with any of these movements, back off slightly.


III. HIP ABDUCTION

This stretch focuses on the muscles on the outside of the hip. Cup the patient’s heel in your hand and your other hand under their thigh. Keeping the leg straight, move it away from the other leg until light resistance is felt. Hold this position for 30 seconds to 1 minute. If the patient feels pain with any of these movements, back off slightly.

IV. ANKLE DORSIFLEXION/CALF STRETCH

This stretch focuses on the calf muscles and prevents “drop foot”. Cup the patient’s heel in your hand and position your forearm along the bottom of his or her foot. Move the foot toward the patient’s head until light resistance is felt, making sure the ankle isn’t turned inward or outward. Hold this position for 30 seconds to 1 minute. If the patient feels pain with this movement, back off slightly.

  V. HIP FLEXOR STRETCH

This stretch focuses on the front of the hip and groin area. Help the patient roll to his or her side. Place one hand on the inside of the patient’s knee and his or her heel under your arm. Place your other hand on his or her buttocks. Gently bring the leg backward toward you until light resistance is felt. Make sure the patient doesn’t roll forward H 13 © Craig Hospital

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or backward. Hold for 30 seconds to 1 minute. If the patient feels pain with this movement, back off slightly. Repeat on the patient’s other side. VI. QUAD STRETCH

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This stretch focuses on the front of the thigh and knee. Help the patient roll to his or her side. Place one hand below the patient’s knee and your other hand on his or her foot. Gently bend the patient’s knee until light resistance is felt. Make sure the patient doesn’t roll forward or backward. Hold for 30 seconds to 1 minute. If the patient feels pain with this movement, back off slightly. Repeat on the patient’s other side. VII. BACK STRETCH

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This stretch focuses on the low back muscles. Bring patient’s legs together and bend both knees. Bring knees toward the patient’s chest until light resistance is felt. Hold for 30 seconds to 1 minute. If the patient feels pain with this movement, back off slightly.

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NOTES:

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303-789-8000

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Respiratory Management

 Introduction  Structure of the Respiratory System..........................................3  Nerve and Muscle Supply of the Respiratory System..........4  What Happens After Spinal Cord Injury....................................5  Potential Complications..................................................................6 n Lung Congestion n Pneumonia n Atelectasis n Choking  Assisted Cough (Quad Cough)....................................................8  Procedure for Using a Nebulizer..................................................9  Procedure for Suctioning at the Bedside................................10  Procedure for Suctioning with a Portable Suction Kit........11  Resources.............................................................................................12

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Respiratory Management

The purpose of the respirator system is to supply oxygen to body tissues and to remove carbon dioxide, which is a waste product, from the body tissues. Breathing is the process by which oxygen in the air is brought into the lungs and into close contact with the blood, which absorbs it and carries it to all parts of the body. At the same time, the blood gives up carbon dioxide which is carried out of the lungs with the air breathed out.

Structure of the Respiratory System The structure of the respiratory system are illustrated in the diagram below: 1. The nasal cavity (nose) is the preferred entrance for outside air into the respiratory system. Its main function is that of humidification, in other words, having the air contain more moisture. The nasal cavity and the mouth insure that the air is at 100 percent humidity when it enters the trachea. The hairs that line the inside wall of the nasal cavity are part of the air-cleaning system. The nasal cavity also warms or cools the air, as needed. 2. The oral cavity (mouth) is an alternative way for air to enter the respiratory system. Š

4. The epiglottis is a flap of tissue that guards the entrance to the trachea, closing when anything is swallowed in order to prevent food or fluid from entering the lungs.

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3. The pharynx (throat) collects incoming air from the nose and mouth and passes it downward to the trachea (windpipe).

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The larynx (voice box) contains two vocal cords. Air moving through the larynx creates voice sounds. The esophagus is the passage leading from the mouth and throat to the stomach.

7. The trachea (windpipe) is the passage leading from the pharynx to the lungs. 8.

The trachea divides into the two main bronchi (tubes), one for each lung, which subdivide into the lobar bronchi, three on the right and two on the left. These, in turn, subdivide further. The smallest subdivisions of the bronchi are called bronchioles, at the end of which are the alveoli.

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The alveoli are the very small air sacs that are the destination of inhaled air. The capillaries are blood vessels that are imbedded in the walls of the alveoli. The blood discharges carbon dioxide into the alveoli and takes up oxygen from the air in the alveoli.

10. The lungs are elastic organs with sponge-like tissue. Inhalation requires an active effort, whereas exhalation occurs passively. The right lung is divided into three lobes and the left lung is divided into two lobes. 11. The pleura are the two membranes (actually one continuous membrane folded on itself) that surround each lobe of the lungs and separate the lungs from the chest wall. The pleural space is the space between the two pleura. 12. The diaphragm is the strong wall of muscle that separates the chest cavity from the abdominal cavity. By moving downward, it creates suction to draw in air and expand the lungs. This is the main muscle used for breathing. 13. The ribs are bones supporting and protecting the chest cavity. They move to a limited degree, helping the lungs to expand and contract.

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Nerve and Muscle Supply for the Respiratory System

When a spinal cord injury occurs, the lungs and the alveoli remain the same. However, just as the injury affects the nerves that control the muscles of the arms and legs, it also affects the nerves that activate the muscles used for breathing. The muscles and nerves of the respiratory system are as follows:

ď ą The diaphragm is a dome-shaped muscle which separates the chest from the abdominal cavity. It is the major muscle and the I4


one which begins the inhalation process. During inhalation, the diaphragm contracts and moves downward, pushing out the abdomen and creating suction which draws in the air and expands the lungs.

 The nerves responsible for stimulating the diaphragm and causing it to contract are called phrenic nerves. These nerves originate at the spinal cord at the C-3, C-4 and C-5 level and travel downward, attaching themselves to the diaphragm. Therefore, spinal cord injury which occurs at the C-1 through C-5 levels may result in partial or complete paralysis of the diaphragm.  The intercostal muscles are located between the ribs, and are activated by the intercostal nerves, T- 1 through T- 11 . These muscles act to increase and decrease the diameter of the chest cage. The ability to take a deep breath and cough is affected by the loss of the intercostal muscles.  The abdominal muscles originate at the T-6 through L-1 levels, and are the most essential for an effective cough. When the abdominal muscles contract, the diaphragm is forced upward and coughing or forcefully blowing out air results.  The accessory muscles are located in the neck and receive their stimulation from the spinal cord nerves in the C- 1 through C-3 region. They act to elevate the rib cage and can assist in deep respiration. However, they alone are not sufficient to support deep ventilation. What Happens After Spinal Cord Injury If the spinal cord injury occurs at C-3 or higher, the phrenic nerve is no longer stimulated and the diaphragm does not function. This means the individual will need mechanical assistance such as a ventilator to breathe. As stated earlier, persons with spinal cord injury at the mid-thoracic level and higher will have trouble taking a deep breath and with exhaling forcefully. They have also lost the ability to forcefully cough or to cough with even normal force because of the loss of the intercostal and/or abdominal muscles.

This loss of the ability to cough can lead to lung congestion during respiratory infections.

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Potential Complications of the Respiratory System

Lung Congestion The thick secretions of a cold or respiratory infection can accumulate in the lungs causing congestion. These secretions provide a place for the growth of bacteria. If not treated properly, pneumonia or atelectasis (collapse of some of the small airways of the lungs) can follow.

Pneumonia Pneumonia is an infection of the lungs. The signs and symptoms that may occur are:  pain (if able to feel it)  fever  shortness of breath  tight feelings in the chest  cough that produces secretions  if tracheostomy is present: change in secretions, such as increased amount and green or yellow in color  weakness, fatigue, nausea, decreased appetite.

If any of these signs or symptoms are present: Contact your Healthcare Provider immediately You may also want to:  Drink plenty of fluids to help keep secretions loose and moist  Sit up as much as possible  Be turned when in bed more often  Assisted coughing and/or increased suctioning if you have a tracheostomy  Use vaporizer to loosen congestion (cool mist type is preferred).

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Atelectasis

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Atelectasis may be a total or partial collapse of the air sacs (alveoli) in the lung causing a lack of air to the affected area of the lung. The signs and symptoms that may occur are:  shortness of breath  thick secretions with change in color  possible pain  feeling of tightness in chest  fever


If any of these signs or symptoms are present: Contact your Healthcare Provider Choking

Atelectasis illustration courtesy of Mosby’s Clinical Nursing Series: Respiratory Disorders

Choking

It is important that you inform people with whom you spend time how to help you if you should choke.

If you begin choking, they should ask if you can speak.

If you can speak, ask them to perform assisted or quad coughing.

See universal choking symbol at right.

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If you cannot speak, they should:  apply four back blows (sharp blows between the shoulder blades with the palm of their hand)  apply four manual thrusts (assisted cough)  repeat four back blows and four manual thrusts until they are effective  call emergency medical services if the above procedure is not effective.

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Assisted Cough

By having someone assist you in coughing, your cough will be more forceful and productive.

Using the assisted cough may be necessary when:  Weak or ineffective cough  Excessive secretions It’s best to avoid the assisted cough when:  Pain in the chest or lungs  Internal problems where pushing on the abdomen could cause complications  Chest injury (such as broken ribs or drains)  IVC filter is present

Assisted Cough Procedure for an assisted cough: 1. Place the fist of one hand immediately below the breast bone with the heel of the other hand on top. The hands need to be over the diaphragm area. The hand position may vary from the illustration, but the hands must be below ribs.

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2. Take a breath and cough as you exhale the air. Your assistant should push inward and upward as you cough. NOTE: If you are on a ventilator, your assistant should push during inhalation rather than exhalation. An Ambu-bag (bag valve mask) may be substituted for the ventilator for a stronger cough. 3. Repeat as necessary with rest periods as needed between efforts.

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NOTE: Assisted coughing can be used while in bed or sitting up. (Be sure the brakes of your wheelchair are locked before assisted I 8 coughing.)


Procedure for Using the Nebulizer

Equipment needed:  Nebulizer  Compressor or oxygen tank (to drive nebulizer)  Oxygen tubing  Normal saline (3 cc vials)

Procedure for the nebulizer treatment:

1. Remove cup portion of nebulizer. 2. Fill with prescribed medications. 3. Return cup to nebulizer. 4. Check heart rate. 5. Place oxygen tubing on nipple on nebulizer and attach other end to compressor or oxygen tank. 6. Turn on compressor or tank until mist is seen coming out of the mouthpiece. 7. Place mouthpiece in mouth and take slow, deep breaths. If on a ventilator, the nebulizer can be placed in line in the ventilator circuit. To do this, remove the mouthpiece and connect the nebulizer between the deadspace tubing and the exhalation valve assembly. 8. During the treatment, monitor the pulse. If the pulse increases more than 20 beats a minute, discontinue the treatment. Otherwise, continue until the medication is used up. 9. Following the treatment, use postural drainage, percussion, assisted coughing and/or suctioning, as appropriate. Often the effects of the treatment are most apparent within 15 to 20 minutes

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Procedure for Suctioning at the Bedside

Equipment needed:  Suction catheter  Water  8 ounce water cup  2 x 2 sterile gauze  Catheter container  Trash receptacle

Procedure: 1. Preparation for suctioning  Wash hands with soap and water, dry thoroughly  Suction catheter is ready and available  Fill cup with water  Open 2x2 gauze package  Turn on wall suction 80-120mm Hg.  Pre-oxygenate the person with 100% oxygen if necessary  Put on gloves  Make one hand, the “clean” hand  Using the other hand, connect suction catheter to suction line  Check for good suction by covering suction port with thumb  Let the person know you are ready to begin suctioning

2. Insertion of Suction Catheter

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 With the “clean” hand insert the suction catheter into the trachea  Stop inserting when resistance is felt, then pull back 2cm and cover suction port  Rotate the suction catheter between fingers while withdrawing it from the trachea  Repeat suction again if needed  Always allow time between suctions for the person to catch their breath  Assess the person for any problems or if they feel to be suctioned again 3. Completion and clean-up

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 Clean suction catheter by suctioning water into the catheter between passes  Clean outside of catheter with 2x2 gauze after suctioning  Return catheter to cup for storage I 10  Wash hands with soap and water, dry thoroughly


Procedure for Suctioning with a Portable Suction Kit Equipment:  Portable suction kit, which should contain these items:  Red rubber suction catheter  Water bottle  Water cup (1 ounce)  2x2 gauze  Gloves

1. Preparation for suctioning:

 Wash hands with soap and water, dry thoroughly  Open portable suction kit and remove:  Red rubber suction catheter  Water bottle  Water cup (1 ounce)  2x2 gauze  Gloves  Fill 1 ounce water cup with water  Open suction catheter package  Open 2x2 gauze package  Make one hand, the “clean” hand  Using the other hand, connect suction catheter to suction line  Turn the suction machine “on”  Check for good suction by covering suction port with thumb  Let the person know you are ready to begin suctioning

2. Insertion of Suction Catheter  Stop inserting when resistance is felt, then pull back 2cm and cover suction port  Rotate the suction catheter between fingers while withdrawing it from the trachea  Repeat suction again if needed  Assess the person for any problems, for example: n shortness of breath n anxiety n trauma bleeding n able to get breath from vent.  Always allow time between suctions for the person to catch their breath 3. Completion and clean-up

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 Clean suction catheter by suctioning water into the catheter between passes  Clean outside of catheter with 2x2 gauze after suctioning  Place suction catheter back into original package.  Turn “off” suction machine

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 Dispose of gloves, gauze and dirty water cup  Wash hands with soap and water, dry thoroughly Resources Craig Hospital Patient Education Respiratory Videos

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Educational Brochures  Art of Breathing  Fatigue  H2O Hydration  Optimal Health  Posture  Smoking and Lungs, Skin, Bladder

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NOTES:

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Sexuality

 Introduction.

 The Reproductive Systems and Sexual Response Cycle.

 The Male Reproductive System.

 The Female Reproductive System.

 The Sexual Response Cycle.  Common Changes After Spinal Cord Injury

 Questions by Both Men and Women after Spinal Cord Injury

 Exploring Your Sexuality

 Resources for More Information.

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Introduction

For most people who are newly spinal cord injured, life and death decisions, physical comfort and settling into a routine of rehabilitation often take priority over issues of sexual functioning. However, when the immediate trauma has passed, people begin to question what the future holds for employment, socialization, recreation and intimate relationships. Part of what they begin to question is their sexuality.

It is difficult to define sexuality. More specifically, sexual functioning is difficult to define because each person’s combination of injury and personality creates an individual picture.

It has been said that while sex is something you do, sexuality is everything you are, your personhood. It may include the intimacy of the sexual act, but it also includes your personality and the social roles you play in your home and community. The biggest boost to sexuality has been rehabilitation that enhances mobility and health. Both contribute by allowing people to put their sexuality into action. In addition, people who are mobile and healthy find themselves in circumstances where relationships can develop.

People may notice the wheelchair first. However, they will soon notice your sexuality, your interest in them, your friendly manner and your shared interests.

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The Reproductive Systems and Sexual Response Cycle

This section illustrates the structure of the male and female reproductive systems and describes how they work. It also describes the sexual response cycle and how things can change following spinal cord injury.

The Male Reproductive System

The structure of the male reproductive system are illustrated below. They are:  The testes (or gonads), two oval-shaped male sex glands contained in a pouch of skin called the scrotum. The testes produce sperm, which can fertilize the female’s egg and result in pregnancy. Testes also produce hormones that cause male sex characteristics such as a deep voice and facial hair.

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 Sperm moves from the testes into the epididymis, a coiled tube, where sperm is stored.  As sexual excitement builds, sperm moves from the epididymis through a tube called the vas deferens. During this movement, sperm is joined by fluids released from the seminal vesicles, the bulbourethral glands, and the prostate gland.

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 Sperm and these lubricants together form semen. Semen moves into the urethra, a tube that allows both semen and urine to pass J 4 out of the male’s body.


 The urethra runs through the penis. The penis is the external male sex organ, filled with spongy tissue that can retain blood. It contains two shafts called the corpora cavernosa. During sexual excitement, these shafts fill with blood, making the penis larger and harder, causing an erection.  During orgasm and ejaculation, muscle contractions force semen out through the urethra. When ejaculation occurs during sexual intercourse, the sperm travels up into the woman’s body and can fertilize an egg, if one is present. The Female Reproductive System

The structure of the female reproductive system are illustrated below. They are:  The ovaries are two oval-shaped female sex organs, one of which releases an egg each month. When the female’s egg combines with the male’s sperm, fertilization occurs. The ovaries also produce hormones that generate female sex characteristics, such as breast development and a wider pelvis.  As an egg is released from an ovary, it is drawn into one of the fallopian tubes, where it can be fertilized. ©

 From the fallopian tube, the egg moves into the uterus, whether it has been fertilized or not. The uterus is a pear-shaped mass of muscle located deep inside the lower abdomen. The primary function of the uterus is to house and protect the developing baby. During pregnancy, muscle fibers of the uterus stretch as the fetus grows.  The uterus lining is called the endometrium. This lining nourishes J 5 Craig Hospital


the baby as it grows. If no egg is fertilized, the endometrium is shed during menstruation. This becomes monthly bleeding or menstrual cycle.  The uterus has a narrow neck called the cervix. In the center of the cervix is a tiny hole called the os, which leads to the vagina.  The vagina is a muscular tube 5 or 6 inches long that connects the uterus to the outside of the body. It has a moist lining that allows the vagina to perform three major functions: entryway for the penis and for sperm during intercourse, exit for menstrual fluid, and passageway for the baby during birth.  The vulva is the name for a woman’s external sex organs. These include the labia majora, which protect the opening to the vagina and are covered with hair as added protection. The labia minora directly cover the opening to the vagina.  The clitoris, located on the labia minora, is the female counterpart to the penis because it is capable of erection, and its stimulation can lead to orgasm. However, orgasm is not essential for fertilization to take place.  The urethra, located below the clitoris, allows urine to pass from the body. It is not connected to the sexual process.

Sexual Response Cycle

Now that you have seen the parts of the male and female reproductive systems, let’s look at the phases and bodily changes that result from sexual stimulation. These phases are called the sexual response cycle.

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The sexual response cycle has four phases. Both men and women can experience all the phases, but their patterns may be different (see graphs).

Phase One is called the excitement phase. This is the beginning of sexual stirrings and could involve sexual thoughts and fantasy as well as actual physical touch.

During the excitement phase, the man’s penis fills with blood and becomes erect. An erection can be caused just by thought, and this is called a psychogenic erection.

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An erection also can be caused by touch or response to another physical stimulation, like a full bladder. This is called a reflex erection. An able-bodied male in the excitement phase usually has an erection caused by a combination of mental and physical stimulation. The woman’s clitoris also becomes erect during the excitement phase.


Her vagina will become moist to make intercourse easier. This is called lubrication. Her breasts will become more sensitive and her nipples will become erect.

Phase Two is called the plateau phase. It is a continuation of the pleasurable feelings begun in the excitement phase. Both sexes may have an increased heart rate, heavier breathing, and a sex flush. In men, the sperm begins to travel through the urethra. This movement is called emission. Phase Three is called the orgasmic phase. In this phase, both sexes can experience contractions in the genital area that may be viewed as very pleasurable. In men, these contractions can lead to ejaculation, or forcing of the semen out through the urethra. However, neither an erection nor an orgasm are necessary for emission and ejaculation to occur.

Similarly, the woman can become pregnant when the sperm enters her vagina, whether or not she experiences orgasm.

Phase Four is called the resolution phase. This phase is a return to the normal body state, as blood pressure, heart rate, and breathing all return to normal. Both sexes may feel sleepy and relaxed.

For both sexes, these phases can occur with or without actual sexual intercourse.

4-Phase Sexual Response Cycle

The graphs above show different patterns of sexual response. All involve the four phases though the patterns are different. Women have more varied patterns than men.

Reproductive System and Response Cycle after Spinal Cord Injury

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It is difficult to know what your sexual experience will be like after your injury. We are all individuals, and especially in the area of sexual response. This section will give you some guidelines about which responses may change and which are likely to be unchanged after a spinal cord injury.

Some Changes That Are Common For Men

Sensation, function and sexual responses are dependent on the level and completeness of each individual spinal cord injury. Erections are usually caused by a combination of mental and physical stimulation.

After spinal cord injury, a man’s erections may be mentally stimulated only or physically stimulated only, depending on the level and completeness of his injury. Also, erections may not be sufficient for intercourse.

There may also be changes in the emission of sperm (when sperm starts to travel through the urethra) and in the ejaculation of sperm (when it is forced out the end of the penis). These changes can cause fertility problems.

Finally, orgasmic feelings are experienced differently. Although some physical sensation may be diminished, some people with spinal cord injuries say they still have orgasmic sensations and that these are similar to their experiences before injury.

Some Changes That Are Common For Women

A woman’s menstrual periods often stop temporarily after spinal cord injury, but usually start again within six months or less. Once her menstrual periods resume, she is as fertile as she was before injury.

Genital excitement in the woman is influenced by both mental and physical stimulation. Following spinal cord injury, this excitement may be from physical stimulation only, depending on the level and completeness of her injury.

Lubrication of the vagina, which takes place during the excitement phase, may also change after spinal cord injury. Some women find they lubricate less; some find it takes longer. A water-base, non- petroleum lubricant, such as KY Jelly is recommended to add lubricant and prevent irritation or trauma to the vaginal tissues.

Common Questions about Sexuality after Spinal Cord Injury

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Questions from Both Sexes……

Will I still enjoy having sex? Will I have orgasms? Both men and women question the ability to feel orgasmic. Will the sensation of ejaculation or genital stimulation result in a physical rush? Most people report that this sensation is missing or altered following spinal cord injury. However, a majority of individuals find other avenues for sexual expression or release. Some have equated certain physical reactions to orgasmic response, others have found non-genital areas of their body that are highly sensitive, and may contribute to orgasmic sensations.

Will I be able to satisfy my partner? In addition to wanting functional information, most individuals with spinal cord injury admit their changed functioning creates a new focus. They rediscover their sexuality, not just in lovemaking, but in their daily lives. People willing to look at the total picture are reminded of the importance of courting, despite being married for many years. They are reminded of the importance of touch, even if it is not felt; the importance of visual images; the importance of complimenting or saying the other person’s name in fondness; the importance of a simple “I love you”; and the importance of not making every sexual contact end in genital focus.

Many individuals become preoccupied with the question of function and whether they can please their partner. Interestingly, partners often report that this was not a concern before injury. It is unfortunate that only after crisis do most of us assess our partnership roles.

What do I do with my catheter during sex? It depends on what kind of catheter you use. Some people with indwelling catheters remove them before sex and replace them afterwards. Many leave their catheters in, often moving or taping them out of the way during intercourse.

What about bowel and bladder accidents during sex? Bowel and bladder accidents during sex can happen. Most people with spinal cord injury find that keeping to a regular bowel program helps prevent bowel accidents or involuntaries at any time. If you are planning sexual activity, avoiding liquids before sexual activity can prevent bladder accidents as well. © Craig Hospital

Can I still get sexually transmitted diseases like syphillis, herpes, and AIDS? Yes. You are just as likely to get any diseases as a non-injured person. A chart at the end of this section describes common symptoms of sexually transmitted diseases and tells you what to do if you have symptoms. How do I take care of this part of my body? How will I know if J 9


something’s wrong? The best way to take care of your genital area is to wash regularly with soap and water and dry thoroughly. As with other areas of your skin, inspect yourself closely for any signs of redness or infection.

What about positioning in bed or chair for sexual activity? Many people after SCI return to their sexual activity and find that by experimenting with various types of positions, pillows and sexual aids can increase satisfaction and fun with sexual activity. You may want to talk with your therapists or nurses to help problem solve positioning if you have pain or spasticity.

Where can I get more information? The list of books at the end of this section will provide more information. While at Craig, feel free to ask questions. Your Family Service counselor is a good resource, but you can ask the doctor, nurse, or any therapist if you have questions.

Questions from Men with SCI…….

Will I be able to get an erection? Many men with SCI experience problems with erectile function, often having difficulty getting an erection and/or maintaining it. How much difficulty you experience will be dependent on your level of SCI and the extent of the damage. Erections happen in combination of two ways. One is called the psychogenic erection and happens when sensory input such as smells, sights or sounds produce erotic emotions Reflex erections are coordinated by a reflex pathway in the spinal cord and do not require input from the brain. Following a SCI the nerve path ways to and from the brain that control erection are completely or partially disrupted. The injury may prevent messages in the brain from reaching the T10-L2 nerves that control erection and many men lose their ability to have psychogenic erections. On the other hand, men with SCI may still experience reflexogenic erections. You may notice some erections happening during catheter cleaning or changing or while being moved from bed to wheelchair. This is a normal reaction and considered a reflexogenic erection. You will want to speak with your Craig Hospital physician about your level of injury and the sexual function that may be possible for you.

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What can I do to increase the number of my erections and how long they last? Here are several treatment options when SCI decreases a man’s ability to get and/or keep erections suitable for sexual intercourse. There are many kinds of sexual aides to help men obtain erections: medications, adaptive devices and surgical options.

Medications Taken by Mouth Viagra ® (sildenafil citrate), approved in 1998 to treat erectile dysfunction, is a pill taken by mouth 20 to 60 minutes before sexual activity. In studies in men with SCI, Viagra ® improved the quality of erections and the man’s satisfaction with their sex life. While Viagra is well tolerated by most men, it is not effective in all cases. It also lowers blood pressure, which may be a problem for men with low blood pressure due to their SCI. It may also have serious side effects when taken with certain cardiac medications. As with all treatments or medications, men who would like to try Viagra® should see an urologist or Craig doctor for a physical evaluation.

Injectable Medications Some medications, when injected into the penis, help the blood vessels to open and the penis to fill with blood. The most commonly prescribed medication is Caverject ® (alprotadil). The amount of medication is carefully prescribed by a doctor, usually an urologist. The amount of medication is adjusted so that the erection lasts no longer than four hours. One risk of injectable medications is a condition called, priapism, when the blood does not drain out of the penis causing the penis to remain erect for an extended period of time. Other risks of using injectable medications are bruising, infection or scarring of the penis.

Penile Implants A penile implant uses rods that can be placed inside a man’s penis through surgery. There are different types of implants with different advantages. Penile implants have a good success rate, but as with all surgery there is a risk of complications. The surgery is permanent until the rods are removed. It is not known how men will function following the removal of these rods. The risks of penile implants include infection, pressure sores or scar tissue forming in the penis, erosion of the device through the skin of the penis or urethra, and the possibility of the device leaking or having mechanical failure.

Tension Rings Tension rings are designed for men who are able to get an erection but have trouble keeping it for sexual intercourse. Tension rings are usually made of rubber or silicone and are placed around the base of an erect penis. The tension ring traps the blood in the penis to help maintain an erection. A vacuum pump can also be used when the man is unable to get an erection on his own.

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This cylinder device is placed over the penis and is pumped to draw blood into the penis. A tension ring is then placed at the base of the penis to keep the penis erect.

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There are risks involved with these options including: bruising, and damage to the penis if the ring is left on too long. If the ring is left on for more than 30 minutes, severe damage can happen to the penile skin and tissue.

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Tension Ring

Positioning and Adaptive Devices Some men have indicated that simple positioning, such as hyperextending their legs, lying on their side or finding certain trigger points can assist in successful intercourse.

In general, experts suggest that you take your time before deciding to pursue any of these options. It’s important to understand the advantages and disadvantages before making your decision. If you’re married or have a regular sex partner, that person should be involved in your decision as well. Your Craig Hospital doctor, Family Service counselor or Urology Clinic nurse can provide more information about erection devices.

What can I do if my wife and I want to have a baby? It is possible for men with spinal cord injury to father children. However, special methods may need to be used to get ejaculates or to do inseminations. Some men report that they are able to obtain ejaculations through masturbation. Others say that if they remain erect sufficient for intercourse, they can sometimes trigger a reflex ejaculation. This is evidenced by the number of men who have fathered children through intercourse.

Others have achieved success using a commercial electric vibrator to trigger a reflex ejaculation, which is then used for artificial insemination. Many pregnancies have occurred using this method.

Still another method used in many clinics across the country is electroejaculation. This procedure is carried out by a physician. A probe that conducts electrical impulses is inserted into the rectum. These electrical impulses stimulate an ejaculation. The external or retrograded ejaculations (semen entering the bladder) are collected and processed for use in insemination.


Questions from Women with SCI…….

Women with spinal cord injuries frequently have questions about personal hygiene techniques, bladder management, contraception, menses, clothing styles, vocational pursuits and home management. They also want to know if their genitals will respond to sexual stimulation and whether they will be viewed as satisfying sexual partners.

Can I still get pregnant? Yes, a woman’s reproductive system is controlled primarily outside of the central nervous system. If you have intercourse you are as likely to get pregnant following injury as you were before injury. See Birth Control Options Chart at end of this section.

Why did my period stop? After spinal cord injury a woman’s menstrual period may stop for a few months because of the shock her body has undergone. Periods usually resume within six months of injury.

Does this mean I need birth control? What kind is good? Yes, if you do not want a pregnancy. You should consider your options for birth control if you plan to be sexually active. There may be other considerations as well. A chart at the end of this section lists different methods and the advantages and disadvantages of each. You should discuss birth control methods with your gynecologist.

What is a gynecologist? A gynecologist is a doctor that specializes in examining and treating women’s reproductive organs and functions. Every woman, whether she is disabled or able-bodied, should see a gynecologist at least once a year once they are sexually active. A gynecologist will give you an exam that includes a PAP smear (a test of the cells of your cervix), a pelvic exam (checking the cervix, vagina, uterus and ovaries), and a breast exam (checking the breasts for lumps or any changes in texture).

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How do I find a gynecologist? You can ask your doctor, staff at a rehabilitation center, or other disabled women for suggestions. You should check on two things when you call for an appointment: 1. Is the office wheelchair accessible? 2. Can staff members assist you with transfers, positioning and other preparation for the examination.

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If I decide to have a baby, will I have special problems? There are special considerations but none that should prevent you from having a baby. Most women with spinal cord injuries can have a normal delivery. There are several health concerns that need to be addressed throughout pregnancy, labor and delivery; including the prevention of urinary tract infections, pressure sores, anemia, constipation, increased spasticity, blood clots and excessive weight gain. To manage these health concerns, it is important for your doctor to understand spinal cord injury.

Planning for pregnancy, labor and delivery as well as managing an infant and toddler will help prevent complications and frustrations for you and your family. Issues to consider are: Will you need help getting around while you’re pregnant? Or will you need help taking care of the baby? How much will this cost? Talking with other disabled women who have had children can help in your planning.

Will I need a cesarean section to deliver the baby? In general, vaginal delivery was preferred with no indication for Cesarean section in most cases. If pre-planning is done with the physician and staff, complications generally can be avoided. Most women with injuries T-10 and above reported painless labor without the need for anesthesia.

Are there risks to the baby? There appears to be minimal risk for birth defects or other health problems in babies born to women with spinal cord injury. An unexpected delivery may occur or last minute rush to the hospital happens more often if women with SCI are not aware they have not gone into labor. Any problems that happen during labor and delivery can be prevented with proper planning and with knowledgeable physician care.

Should I use tampons or napkins during my menstrual periods? You can use either. Some women prefer tampons because they don’t cause skin irritation and give you better protection during transfers. You should change them often - at least three times a day - to avoid the risk of toxic shock syndrome. If you have trouble inserting a tampon due to limited hand function, try using a lubricated tampon or get your attendant to assist you. If you use napkins, check regularly for signs of skin irritation and pressure between your legs.

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What about douches and vaginal hygiene sprays - should I use them? Over the counter douche products are not recommended because they rinse away normal bacteria that protects your body from infection. If you have a vaginal infection, a non-prescription douche can push the infection further into the vaginal canal, even into the cervix and uterus where it may become more of a problem. Vaginal discharge in small amounts is normal. Always report heavy, discolored or foul

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smelling discharge to your health care provider. Vaginal hygiene sprays are not recommended. The chemicals in them can irritate the skin and make infections or skin breakdown more likely.

Exploring Your Sexuality Despite changes in sensation and response, people with spinal cord injuries report that they have a satisfying sexual life following an injury. As is true with any relationship, the key to satisfactory sexual experience Is good communication. Being aware of your partner’s likes and dislikes and being able to express your own are fundamental to good communication.

Some experimentation can enhance sexual pleasure. Experimentation can involve physical contact such as changes in sexual positioning or techniques, or it can involve emotional options such as courting. Some options will appeal to you and others will not; the important thing in every case is that you use ideas that are comfortable for you.

Many people with SCI have found that the traditional position of the man on top is not the most satisfying for either partner. This can be especially true if the injured partner is male. Using a side-to-side or women on top position in this case, allows the woman to be the more active partner and gives the man free use of his hands.

Some people with spinal cord injuries find that they have increased sensitivity in the area just above their loss of sensation. Having their partner stroke and caress this area can be very pleasurable. Others mention that fantasy and even sharing these fantasies with their partners enhance their sexual experience. Many couples also enjoy manual or oral stimulation as part of their sexual activity. Sexual devices such as vibrators may also increase enjoyment. You may try different tactile stimulants such as ice, water, wash cloth, lace, sheepskin, velvet, silk, whipping cream or anything else that may be interesting to you and your partner. Sexual stimulation for your partner may also be enhanced by these things. Again, personal values and preferences should be your guide. Many persons find that they are willing to explore new areas of sensuality. They are open to using body oils or lotions or to giving a massage, all which enhance the sexual experience in ways that are difficult to describe. As we said in the introduction, sex is an act and sexuality is who you are. The more you and your partner can share your uniqueness in a sexual relationship, the more satisfying that relationship will become.

Remember, the ultimate sexual stimulant is open, honest and playful communication between partners.

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Common Sexual Health Problems

Websites: www.scifertility.com www.sexualhealth.com

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NOTES:

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Skin Care

 Structure and Function of the Skin........................................3  What Happens After SCI.............................................................3 n Loss of sensation n Loss of movement and sensation Decrease in blood circulation  Keeping Your Skin Healthy: What You Can Do to Prevent Skin Sores.........................................................................................4 n Do your weight shifts Check your skin Regular turns in bed n Padding in bed-Suggested padding positions Properly fitting clothes and shoes n Food and water intake Clean and dry skin Activity n Stop smoking n Reduce alcohol and drug use Inspect your equipment n Foot and toenail care  How Do Skin Sores Happen?...................................................12 n Pressure Shearing Trauma Other Causes  How to Recognize a Skin Sore................................................14 n Blanching a red area Problem-solve the cause n General care guidelines n Calling your health care provider Signs of an Infection

Progression of Skin Sores.........................................................17 n Stage 1 n Stage 2 n Stage 3 n Stage 4

 Effects of Aging............................................................................18  Scar Care.........................................................................................18  Resources........................................................................................19 © Craig Hospital

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Structure and Function of the Skin

Just like the heart, liver, or kidneys the skin is an important body organ. The major function of the skin is to act as a wrapper to contain and protect the skeleton and other organs. The skin is ideally strong and elastic. An elaborate system of blood vessels supplies the skin layers with important nutrients and takes away waste products ensuring healthy, functional skin.

The outer layer of the skin is called the epidermis. It consists of dead skin cells and a new layer of cells just below the surface. The outer part of the epidermis acts as a buffer between the underlying body tissues and the environment. Dead cells are constantly shed and replaced with newer cells from the underlying layer. The dermis, or the under layer of skin, consists of thick fibrous tissues that give strength and elasticity to the skin. This layer contains hair follicles (roots), sweat glands, blood vessels and nerve endings.

Beneath the first two layers is a layer of tissue containing fatty materials that (subcutaneous tissue) have both insulating and cushioning properties. Both the skin and the fatty tissue cover and protect the muscles. Skin Layers: Epidermis Dermis

Subcutaneous tissue

Muscle Bone What Happens after Spinal Cord Injury?

Loss of Sensation: After a spinal cord injury, the nerves that usually alert us to touch, whether pleasurable or painful, may have been affected. In other words, your sensation or ability to feel may be absent or impaired. With the loss of sensation, messages from the sensory nerves do not reach the brain. The person with a SCI is deprived of an important alarm system. Sensation can tell us when to move to relieve pressure, stay away from hot surfaces or to shift our weight when uncomfortable.

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Loss of Movement and Muscle Mass: With paralysis the muscles tend to shrink and be less bulky and get smaller (atrophy). Muscle mass or thickness serves as natural cushion over the bony areas. A decrease in muscle mass leads to less protection and more pressure on the thin skin layers. K3


Decrease in Blood Circulation Blood flow to the areas of paralyzed limbs decreases due to the lack of muscle movement. The decreased blood flow prevents nutrients from getting to the skin, making it poorly fed and more fragile. The skin’s ability to heal itself also decreases as a result of the poor circulation.

Keeping Your Skin Healthy: What You Can Do to Prevent Skin Sores!  Do your weight shifts Every 15-30 minutes perform a weight shift to relieve the pressure on your bottom and back. A weight shift can be performed by pushing up in your chair, leaning forward or side to side or by reclining back in your wheelchair. You must do weight shifts at all times, whether you are sitting in your wheelchair or in another chair. Your therapist will help you decide the best way for you to perform a weight shift.

Weight Shifts

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Push-up Recline

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 Check your skin every morning and night Routine skin inspection is a way of finding skin problems early. Look at your skin or have your attendant look at your skin for any changes in skin color, blisters, bruises, cracked or dry skin. Use a mirror to check your back, bottom and heels. Feel for any hardness, or swelling or warmth that may signal skin breakdown. Any change in your skin is a signal of trouble. Inspecting your skin must become routine each morning, evening and any other time you think you might need to. The arrows below point to the bony places that are at high risk for skin problems.

 Check these Bony Areas

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 Practice regular turns while in bed Using a regular turning schedule during the night will also keep your skin healthy. Depending on your body size and skin tolerance, your turning schedule may vary from 2 to 6 hours. Adding 30 minutes in a given position and then checking for redness can gradually increase the length of time between turns. You may want to slowly increase turning times when you are sleeping on a new surface or in a different bed than your own. K5 Craig Hospital


It is important that you inform people with whom you spend time how to help you if you should choke.

ď ą Practice padding in bed. Placing pillows and pads to relieve pressure can protect the bony prominences of your body. One rule of thumb to follow is to place padding above and below the bony prominences. See the charts on the following pages for reminders of where pads need to be placed.

Padding in Bed

How you pad yourself in bed is a very individualized part of your personal self-care. Here at Craig Hospital all new patients are padded fully for the first two weeks after being admitted. As your skin tolerance increases, meaning that your skin gets stronger and stays healthy, we will reduce the required amount of padding while you sleep. It is good to know exactly where you have to be padded. The charts below show full padding recommendations. If you ever change sleeping surfaces or have to sleep on a different bed, you may need to pad more than usual. Use these charts to help remind you where the best places are to put the pads. Remember to always check your skin for redness or changes due to pressure. Warning: Do not substitute folded towels or blankets for foam pads or pillows.

n On Your Back (Supine)

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#1: A pillow under your head. #2: A pad above and below the tailbone area. #3: A pad just above the knee bend. #4: A pad just above the back of the heel. #5: A pad at the bottom of the feet to keep a 90 degree angle at the ankle. #6: A pad or pillow between the knees. #7A,B,C: Arrange pads and pillows under arms to keep chest open and shoulders back. K6


n On Your Side #1: A pillow under the head. #2: A pillow behind the back for support. #3: A pad or pillow between the arm and torso. # 4: If you are having shoulder pain while on your side, try adding a pad under the chest or thoracic region to relieve the pressure on the shoulders. #5A,B: A pad above and below the hipbone. #6: A pad or pillow between the knees and ankles. #7: A pad above the anklebone

n Part way on Your Side and Stomach (3/4 Prone) Š

#1: #2: #3: #4:

A pillow for the head. A pillow for the arm to rest on and shoulder pulled forward. Upper leg pulled forward with pillow under leg. A pad under anklebones.

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n Semi Supine #1: Pillow under the head. #2: Pillow behind the back. #3: Keep lower shoulder in an open position with pillow under arm for support. #4: Keep elbow of upper arm at side. Support arm with pillow. #5: Turn hips to side and support position with pad to lower back. #6: Place a pillow lengthwise between the lower legs. The top leg is positioned forward on the pillow. Do not position legs directly on top of each other. May need to bend the knee more to prevent from rolling back. #7 Pad above ankle bone.

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n On Your Stomach (Prone) #1: Pillow under the head. #2: Thin pillow or pad under the chest (Optional to relieve pressure to collar bone) #3: Pads above and below the hipbones to relieve pressure on the suprapubic catheter and genital area. #4: Pad placed above the knee to maintain natural curvature and relieve pressure on kneecap. #5: Pad between knees and ankles #6: Pillow or pad under the lower legs.

Wear properly fitted clothing and shoes. What you wear on your body and feet can also affect the health of your skin. It is recommended that you do not wear pants that have thick seams, rivets or bulky pockets. These can cause pressure on your skin while you sit. Wearing shoes that are 1-2 sizes bigger will allow for any swelling of your feet during the day. Check your feet for redness after about two hours when you are wearing new shoes. Be aware of the effect of your clothing and shoes on your body. Remember that skin sores can happen quickly.

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Eat a variety of foods and drink plenty of water. Your skin is the largest organ of your body and must be fed properly to maintain strength and elasticity. Eating a well-balanced diet means eating a variety of foods from each of the food groups. This is the best way to ensure healthy skin. If you already have a skin sore it will be important that you eat foods rich in protein and have adequate calories in your diet. Foods high in protein include chicken, fish, meat, beans, cheese, yogurt and milk. There are dietary supplements that can help provide more protein in your diet as well. Check with your dietitian about which of these are best for you. Drinking at least 2-3 Liters of water per day will give your body the moisture it needs. Water intake may vary according to your bladder management routine. Talk with a dietitian for more information about what foods will be best for you. K9 Craig Hospital


Proper body weight . Maintaining a healthy body weight is also important for good skin health. The risk for skin breakdown increases with unplanned weight changes. When you are under weight, you have less natural padding to protect your body areas. When overweight, it is harder to perform good weight shifts and relieve pressure to your bottom due to the extra body weight. Keep your skin clean and dry. By keeping your skin clean and dry you will be helping to fight infection, maintain normal body temperature, help yourself feel better and keep the buildup of oils and dirt off your skin. Clean up immediately after any leakage of stool or urine. Stool or urine can cause irritation and breakdown of skin. Change undergarments or other clothing if they become wet from perspiration.

Be as active as you can. Maintaining an active lifestyle by getting up and out of bed every day will help your overall health and wellness. People who get back to work, school and community have less chance of getting a skin sore simply because they are moving around and more aware of their bodies. So get up!!

Go to Work

Attend Sports Events

Play Sports

Be Active at Home

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Stop smoking. Smoking slows the circulation to the skin layers decreasing the blood supply to those areas even more. Burns from cigarettes can also happen quickly. Talk with a health care provider about ways you can try to quit smoking. If you have a skin sore and continue to smoke, it will take a longer time to heal.

Reduce the use of alcohol and drugs. When people use alcohol and drugs, awareness of important behaviors is often changed. For example, after a few drinks you may not remember to do weight shifts, or your balance and coordination are affected thus causing a fall or bad transfer. You must be aware at all times what is happening with your skin. By taking drugs or drinking alcohol you could lose track of time, hurt yourself or even get a sore without knowing it until it is too late.

Inspect your equipment: wheelchair cushion, bath bench, and mattress. Periodically check your equipment. Wheelchair cushions that are air- filled such as the RO-HOÂŽ cushion can lose air especially when you are travelling. When you go from a low elevation to a high elevation, the air pressure will increase making the cushion harder than usual. Going from a high elevation to a low elevation, the cushion may lose pressure thus making it too soft for good protection. So check it for proper inflation. Cushions that have gel in them must also be checked. The gel inside can get hard or lumpy as the cushion gets older. Warm a cushion up to room temperature if it has been left in the cold before sitting on it.

Bath benches and padded toilet seats can develop cracks in the covering. Check before sitting on them to prevent any skin irritation. Your bedding and pads can also lose their sponginess. You may have to replace old bedding and pads as they age for maximum protection. Foot and Toenail care. Special care must be taken with your feet and toenails. Your feet should be washed and dried each day, paying particular attention to the area between the toes. Follow the foot wash with a softening lotion, such as lanolin, if the skin appears cracked or dry. Toenails should be cut straight across. Skin will sometimes adhere to the underside of the nail. If red areas develop at the corners of the nails, be aware that K 11 Š Craig Hospital


this could be the beginning of an infection. Watch the area carefully, and if redness continues or becomes more extensive, consult your physician.

How Do Skin Sores Happen? Skin sores, which are also called pressure sores, decubiti, pressure ulcers or bed sores, are a common problem after a spinal cord injury due to lack of movement and sensation as well as the changes in blood circulation. All of these factors combine to put people with spinal cord injury at high risk for a skin problem.

Causes of Skin Sores: There are three main ways that skin sores can happen.

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1. Pressure. When you remain seated or lying in the same position for a long time, the skin layers are compressed and can stop the important blood flow to the skin surfaces. When this pressure occurs it deprives your skin of oxygen and other essential nutrients carried by the blood. It also stops the removal of cellular waste products. One after another, the body’s skin cells start to die and a sore appears. Pressure Spots

How Pressure Can Happen  Sitting too long without a weight shift  Lying too long without turning  Not enough padding while in bed  Shoes that fit too tight. Wear shoes 2 sizes bigger to allow for swelling.  Pants, belts that fit too tight  Sitting or lying on hard objects, such as: catheter connector, bulky seams, catheter clamps, and buttons on mattresses.

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Remember without normal sensation, you may not know when you have too much pressure on your skin. So pay attention to any surface you are on, how much time spent on it and what it might be doing to your skin.


2. Shearing. Shearing is the result of forces working in opposing directions. Shearing happens when the layers of skin are pulled in opposite directions. When this happens there is tearing of the skin layers causing damage to the underlying tissues.

Normal Skin Shearing Layers

How Shearing Can Happen  Bottom drags over a tire during a transfer  Sitting at a 45 degree angle while in bed or wheelchair  Dragging your bottom across a bed or shower bench  Scrapes on the skin due to a fall, bump or bruise  Sliding in or out of your wheelchair repeatedly

3. Trauma. Trauma or damage to the skin can happen in a variety of different ways. Basically trauma is anything that can cause harm to the skin. Anytime the skin layers are damaged due to a break in the skin barrier, blood flow is stopped, or any outside force causes the skin to be broken would be considered a trauma. Cuts Burns Bruises Scrape

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How Trauma Can Happen  Frostbite  Sunburn, burns from hot water bottle or heating pads  Scrapes or cuts  Insect bites, animal bites  Automobiles-tailpipes, heaters, hot seats, seatbelts  Prolonged wetness on the skin-perspiration, urine, stool  Friction due to spasticity  Chemical or tape burns

4. Other Causes of Skin Sores. There are many other causes of skin sores. Remember that skin sores can happen whenever there is undue pressure, shearing or trauma to the skin layers. There are also times when you may be more at risk for a skin sore.  Loss of bladder or bowel control  Poor nutrition, not eating well  Fever or other sickness  Changes with aging  Poor hygiene  Depression  Equipment failure  Edema or swelling of the feet and ankles  Weight loss or weight gain

How to Recognize a Skin Sore Once a pressure sore has developed, it can worsen rapidly unless you take quick action to treat it. The first symptom and warning signal is a reddened area (a dark skinned person the area may look purple or bluish). No damage has occurred if the redness fades within 15 minutes after the pressure is removed.

Skin damage from pressure usually begins over bony prominences: Any place on the body where the bones lie close to the skin surface. Bony prominences tend to put pressure on tissue from within. If there is a firm surface on the outside, the tissue will be pinched between the two surfaces resulting in a lack of blood flow to the tissues.

Blanching a Skin Sore: You can check the blood circulation of a possible skin sore by performing a quick test called blanching. Press on the red or pink mark with your finger, the area should go white, remove the pressure and immediately the area should return to red within a few seconds indicating good blood flow. If the area stays white, then blood flow has been impaired and damage has begun. If the area does not blanch, you must stay off the area to allow for the circulation to resume to the damaged area. This may take a few hours or days to heal and you may have to stay in bed and off the area during this time.

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Blanching a Skin Sore

Problem Solving the Cause: Once a red mark has appeared you must check to find the cause. Did you lay on something hard while in bed? Did you pad yourself adequately while in bed? Is your cushion in proper working condition? Are your pants too tight? Was that last transfer done poorly? Are you doing weight shifts consistently and on time? Are you sick or feverish? You must find and correct the cause immediately. Don’t wait till it’s too late and the skin sore has gotten even worse.

Here are some general care guidelines you can follow when at home. These are considered “first aid” and do not replace the recommendations or care as directed by your nurse or doctor.

Burns/Blisters:  Immediately apply cold water for 20 minutes.  Keep all pressure off the area.  Cover with a bandage for protection.  DO NOT pop open a blister. Broken skin will allow germs into the body.  If a blister does break open, treat it as an open sore.

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Open Sore:  Get off the area, relieve all pressure.  Clean with soap and water.  If due to moisture, leave area open to air as much as possible.  If due to pressure, apply a gauze bandage moistened with saline solution* and thoroughly wrung out. Change this bandage three times a day.  Moisten bandage with saline before removing. DO NOT pull off dry bandage as this will damage healing skin.  Contact your health care provider.

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Calling Your Health Care Provider. Knowing when to call your health care provider is important too. Don’t wait until it’s too late to ask for help or advice about a skin sore. Skin sores could keep you out of work, school and social activities if not taken care of immediately. Call your health care provider if you are unsure of what to do about a skin sore.

When to Call Your Health Care Provider

 A red or pink mark remains for 2-3 days  Any blister or burn  Any sign of infection*  Any open sore or cut  When you are just not sure what to do

*Signs of Infection

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 Foul odor  Redness or warmth around sore  Tenderness of surrounding area  Swelling  Fever or chills (Temp over 100)  Thick green or yellow drainage


Progression of Skin Sores Once a skin sore has started, it will follow a predictable course of continued breakdown unless treated and the cause is found. It is important to at least have a basic understanding of the stages of skin sore development.

STAGE 1 Description  Skin intact, warm, firm  Red or pink area  Swelling or raised area  Stays white after blanching area Treatment  Stay off the area, remove all pressure  If site not blanching, stay off of that area  Keep clean and dry  Eat a variety of foods, increase protein foods, drink water  Find and correct the cause  Call your health care provider if has not gone away in 2-3 days STAGE 2 Description  Formation of an open wound or blister  Loss of skin appearing as an abrasion or shallow crater  May be painful and visibly swollen Treatment  Stay off the area, remove all pressure  Keep skin clean and dry  Eat a variety of foods, increase high protein foods, drink lots of water  Call your health care provider  Apply a wound dressing recommended by your health care provider

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STAGE 3 Description  Deep wound to muscle tissue  Possible infection, look for pus, drainage  Possible necrosis (black, dead tissue) Treatment  Stay off the area, remove all pressure  Eat a high protein diet, drink plenty of water  Start taking a daily multi-vitamin  Keep skin clean and dry

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 Call your health care provider  This is a serious situation. It may require bed-rest for many months or possible surgery for the sore to heal. STAGE 4 Description  Tissue is now destroyed all the way down to the bone or close to the bone.  Foul odor, drainage  Necrotic (black, dead) tissue present  High possibility of infection Treatment  Stay off the area, remove all pressure  Eat a high protein diet, drink plenty of water  Start taking a daily multi-vitamin  Keep skin clean and dry  Call your health care provider Effects of Aging on Your Skin Aging of the skin is a fact of life for all individuals. With aging, our skin becomes thinner, dryer, has a decreased blood supply and is more fragile (especially to shearing forces). These are of particular concern to a spinal cord injured person the chance of developing a pressure ulcer increases. You may notice that sitting and turning tolerances may diminish and you may develop pressure ulcers from activities that never caused any problems before. You may need to switch to a different type of cushion or change (increase) your turning and weight shift schedule. As you age, be sure that your mattress and cushion do not age along with you. All cushions must be checked as they deteriorate and lose their pressure relieving ability. Other types of cushions and mattresses should be checked periodically. The Craig Hospital Research Department has studied the effects of aging on people with SCI. Please contact the Research Department for additional information.

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Care of Skin Scars Scars: A scar is a permanent patch of skin that grows over a wound. It forms when your body heals itself after a cut, scrape, burn or sore. You can also get scars from surgery that cuts through the skin, from infections like chickenpox, or skin conditions like acne. Scars are often thicker, as well as pinker, redder or shinier, than the rest of your skin. Scars usually fade over time but never go away completely. If the way a scar looks bothers you, various treatments might minimize it. These include surgical revision, dermabrasion, laser treatments, injections, chemical peels and creams. If a scar will be exposed to the sun, it is vitally important to protect it by using sunscreens that contain Zinc Oxide.


Resources Educational Videos:  Skin Care after Spinal Cord Injury  Padding in Bed

Brochures Available through the Craig Hospital Research Department:  Posture  Smoking & Lungs, Skin & Bladder  Weight Gain: The Battle of the Bulge  Skin: It’s Too Much Pressure

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Substance Abuse

 Alcohol and Drug Use/Abuse...................................................3  General Alcohol Information....................................................3  Signs of a Problem. .....................................................................4  Resources........................................................................................5

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Alcohol and Drug Use/Abuse If you are like many Americans, you may drink alcohol occasionally and you may want to return to drinking alcohol after discharge from Craig Hospital. Since your SCI has affected your body in so many ways, it is important to consider some important factors regarding alcohol that you may not have thought about before. Researchers say that dramatic life changes put people at more risk for alcohol use and abuse. Some of these life changes include:

 Health problems, injury or disability  Loss of a loved one or marital stress  Retirement, underemployment or unemployment  Lower income or financial problems  Health problems or decline in function or mobility  Decrease in or loss of independence  Isolation or increased leisure time

Sound familiar? Many of these factors describe the major life changes people experience after a SCI. Maybe that’s why people with SCI overuse and abuse alcohol at about twice the rate of the general population. General Alcohol Information Drinking even moderate amounts of alcohol is not without risk. And if you drink at more than moderate levels, you may be putting yourself at risk for serious health problems as well as problems with your family, friends or coworkers. What is a Drink? A Standard Drink is….  One 12-ounce bottle of beer* or wine cooler *Beers can differ in their alcohol content with malt liquor being the highest in alcohol content than most brewed beverages.  One 5-ounce glass of wine  1.5 ounces of 80-proof distilled spirits

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For most people who drink, alcohol is a pleasant accompaniment to social activities. Moderate alcohol use up to two drinks per day for men and one drink per day for women and older people-is not harmful for most adults. Nonetheless, a large number of people get into serious trouble because of their drinking. Currently, 14 million Americans, 1 in every 13 adults, abuse alcohol or are alcoholics. Several million more adults engage in risky drinking and heavy drinking on a regular basis. In addition, 53 percent of men and women in the US report that one or more of their close relatives have a drinking problem.

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The consequences of alcohol misuse are serious-in many cases, life threatening. The person with a SCI becomes much less able to handle alcohol due to loss of muscle mass and body weight and increased use of prescription medications. Alcohol can cause serious health problems for the person with SCI, including:  Alcohol interacts negatively with more than 150 medications. Alcohol in combination with daily prescription drugs can impair judgement and coordination, speed up or slow down the effects of prescribed drugs, and cause drowsiness. You must talk with your Craig Hospital doctor about drinking alcohol and your prescription drugs.  Alcohol in combination with antibiotics can result in alcohol intolerance. Symptoms include headaches, rapid pulse, vomiting, palpitations and breathing too fast.  Alcohol use causes water loss, making you produce more urine. Drinking alcohol could disrupt your catheterization schedule, lead to bladder or kidney problems, increase your chances of bladder infection or cause you to leak urine.  Safety is also affected. Coordination and balance are affected by alcohol consumption. Judgement becomes impaired. Falls or risky transfers are more likely to occur. You may forget or be unable to do weight shifts properly or forget to do them at all. If those around you are also drinking they may not be able to help you. What Are Signs of a Problem? How can you tell if you have drinking problem? Answering the following four questions can help you find out: 1. 2. 3. 4.

Have you ever felt you should cut down on your drinking? Have people annoyed you by criticizing your drinking? Have you ever felt bad or guilty about your drinking? Have you ever had a drink first thing in the morning (as an ‘eye opener’) to steady your nerves or get rid of a hangover?

One “YES” answer suggests a possible alcohol problem. If you answered “YES” to more than one question, it is likely that a problem does exist.

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Learning to live with a SCI can be a very stressful situation. There is a lot of stress initially after the injury when you are learning to deal with a disability, and there are also stressful days throughout your life when some limitation may become apparent and you become angry. Alcohol and/or drugs are an easy stress relief option that is available to most people. But it is very difficult to address disability issues if you are not sober. Try to find other L 4 outlets to deal with your stress or find someone that you are comfortable


talking with about your stress. Become informed about the many options that are available to you. Resources If you or someone you know needs help or more information, contact: AlAnon Family Group Headquarters 1600 Corporate Landing Parkway Virginia Beach, VA 23454-5617 www. al.anon.alateen.org, 1-888-4AL- ANON Make referrals to local Al-Anon groups, which are support groups for spouses and other significant adults in an alcoholic person’s life. Also makes referrals to Alateen groups, which offer support to children of alcoholics. Alcoholics Anonymous (AA) Worldwide Services 475 Riverside Drive, 11th Floor New York, NY 10115 212-870-3400 www.aa.org Make referrals to local AA groups and provides written materials on the AA program. Many cities and towns have a local AA office listed in the phone book. The website helps to locate AA services near each city. National Council on Alcoholism and Drug Dependence (NCADD) 217 Broadway Suite 712 New York, NY 10007 800-NCA-CALL www.ncadd.org Provides telephone numbers of local NCADD affiliates who can provide information on local treatment programs and services. Research & Rehabilitation Training Center for Substance Abuse and Disability Wright State University School of Medicine 3640 Colonel Glenn Highway Dayton, OH 45435 Brochures Available from Craig Hospital Research Department  Alcohol Abuse  Medications  Smoking and Lungs, Skin, Bladder  Optimal Health  You Are How Your Feel © Craig Hospital

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Š Craig Hospital 3425 South Clarkson St. Englewood, Colorado 80113

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Accessible Living

 Introduction

 Outside the Home n Neighborhood................................................................................3 n Approach to Your Home............................................................4 n Parking..............................................................................................6  Inside the Home n General: Standard Design Specifications.............................7 n Doorways........................................................................................10 n Hallways...........................................................................................11 n Floor Coverings............................................................................12 n Communication............................................................................12 n Kitchen.............................................................................................13 n Bathroom........................................................................................18 n Bedroom........................................................................................23 n Dining. .............................................................................................24 n Living Room..................................................................................24 n Laundry...........................................................................................24  Choosing a Place to Live n Renting...........................................................................................25 n Mobile Homes..............................................................................25 n Remodeling...................................................................................26

 Resources...........................................................................................29

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 Accessibility Checklist...................................................................27

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n Buying or Building a New Home..........................................26

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Accessible Living Introduction This section will give you information about finding or remodeling living quarters to meet your needs. Making sure the home is truly accessible is one of the most important ways to increase your level of independence and satisfaction with your life after leaving the hospital.

Even with a severe disability, you can maintain a great deal of independence if your home is convenient and accessible. If it is not, “home” can become a “house” that is an obstacle course, and the simplest task can become an ordeal.

Mobility problems vary greatly, and one disabled person may solve a problem in one way, while another person will resolve the same problem in another. You will have personal preferences when choosing and arranging a home and its furnishing. We hope that you and your family will regard the suggestions in this section as guideines that can be adapted to meet your needs and preferences.

There are three ways of attaining a wheelchair accessible home: 1. Modifying your current home 2. Searching for an existing unit (house, apartment or mobile home) that meets your needs 3. Starting from scratch and building new

Each of these methods is discussed briefly. In addition, the form at the end, lists many basic accessibility suggestions in one place so that you can review them easily with a builder, seller, or landlord.

We hope that you will find this section useful as a guide in helping to make a home not only wheelchair accessible and functional but also increasingly livable.

Remember, these guidelines are just suggestions. You have the freedom to set your own priorities and choose whatever options are most appropriate for you.

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Neighborhood Let’s start with things outside your home. Whether it’s a house, mobile home, or apartment, you’ll want to consider how convenient it is to activities you need or want to do. Consider the following list of places. Which do you go to frequently? Can you get to these easily in your car, wheelchair, or public transportation? M3


 grocery store  post office  laundry  recreation (movies, restaurants, health club, etc.)  work  school  church or synagogue  other shopping

Approach to Your Home In addition to the neighborhood, you’ll want to review the immediate approach to your home. Is there a wide, level sidewalk? Are there steps? Is there room for a ramp?

In general, you’ll want a flat, even approach to your home. There should be a wide (at least 3 feet) pathway to the house that’s in good repair and made of a non-slip surface. If there is any slope, it shouldn’t be more than 1 foot per inch of rise. Also note any sloping or drop-off to the side that could cause difficulty.

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If there is a significant rise or steps leading to the residence, a ramp can be added for accessibility. Switch-back ramps can be used when ramping many steps or when the space isn’t adequate for a straight ramp. Ramps should also be at least 36”-48” wide, with a level surface at least 4 feet square at both top and bottom. The top landing area should be nearly flush with the exterior door threshold (no greater than ½”) and the same for the bottom landing as well. There should be an edge along the side of the ramp to prevent accidentally wheeling off. Figures #1-3 show dimensions for the three common types of ramps. Formulas for these ramp specifications are as follows:

Maximum Slope: For every inch of vertical rise, six inches of ramp length. (Should be used with power wheelchair only; it is very rare that someone in a manual chair can navigate this slope.)

Moderate Slope: For every inch of vertical rise, ten inches of ramp length. (Applicable for a strong paraplegic or a power chair.)

Minimal Slope: For every inch of vertical rise, 12 inches of ramp length. (Applicable for a paraplegic and/or strong quadriplegic.)

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In front of the entrance, you’ll need a platform large enough to allow the wheelchair to turn in various directions so you can go through the doorway without backing up. This platform should be at least 5 feet


square. If the door opens out, an additional one foot of space may be necessary on the side opposite the hinges to allow the wheelchair to move freely around the door as it opens.

Handrails can be added to either a ramp or a regular sidewalk to provide extra stability. Usually, handrails are not needed unless the slope is more than five percent (1 inch of rise for every 20 inches of distance). If a handrail is needed, it should be continuous and smooth, be set 4 feet above the ramp, and extend 1 foot beyond the top and bottom of the ramp. The ramp width should then be only 32� or the width of the person’s reach.

Good non-slip surfaces for sidewalks and ramps include concrete with gravel mixed in or wood with small slats or strips of grit tape.

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Parking Whether you rent or own your home, you’ll need parking that is close to your residence and that gives you enough room to get in and out of your vehicle. Covered parking, with a covered walkway to the entrance to your home, is a great advantage during bad weather.

A garage, especially one that connects to the house, can be ideal for a person using a wheelchair. However, you will need to check the size of the garage to make sure there’s enough room to handle your wheelchair and perform the transfer. The garage should be at least 12-15 feet wide and level with the entrance to the home. You’ll also need an electric garage door opener that you can control from both inside and out. Figures #4-5 show the space required for cars and vans. A van with a raised roof may require a higher garage entrance.

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Inside the Home

General: Standard Design Specifications Although desired features will vary from home to home, there are some standard design changes that will make your home more accessible. These include halls and doorways that are wide enough, furniture, switches, and controls at the appropriate height and items placed within reach from your wheelchair.

You’ll need to know the exact measurements of your wheelchair before beginning any home modifications. Figures #6 through #9 show you where to measure and illustrate the measurements of several common types of wheelchairs. The turning radius of each of the chairs is approximately 60 inches, but may be more. Š Craig Hospital

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In addition to the dimensions of the wheelchair, it is important to realize that arm reach is also limited. While your reach will depend on your size and physical abilities.


The actual reach past the front of the wheelchair is, at most, only a few inches. In addition, whatever is above the height of your raised arm will be difficult to see or unreachable. Figures 10 and 11 illustrate the average reach of a person in a wheelchair, while Figures 12 and 13 show acceptable and unacceptable placement of the telephone, light switches, thermostat, and so on.

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Doorways Entry doorways and doorways inside the house should be at least 30-32 inches wide. If the location of the door makes it necessary to approach the entrance at an angle, the doorway will need to be wider. Ideally two accessible exits need to be provided on opposite sides of the house so that at least one is available in case of emergency.

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One way to gain an extra two inches or more in a doorway is by installing cranked hinges (Figure 14). These hinges can be installed without damage to doors or door sills, and they allow the door to close flat against the wall. They can be easily installed using the same three holes drilled for ordinary hinges. Because no remodeling is involved, these hinges are a good choice for renters.


Door handles should be 36 inches above the floor. All doors should open with a single effort, so lever-type handles are preferred to knobs.

Avoid locks that require you to use both hands at the same time. If inside rooms have locks (the bathroom, for instance), make sure these can be opened from the outside in case of emergency. Key holders can be ordered if you have limited hand function.

Two doors that are close together, as in an entryway, can present special problems. Figure 15 illustrates an unacceptable “trap” situation and two possible solutions.

Hallways Hallways should be a minimum of 36 inches wide throughout the house; however, this may not be wide enough for turning into a doorway. The width of the hallway depends on the type of turn being made into the doorway and on the width of the doorway.

A doorway 34 inches wide needs a minimum hallway width of 40 inches to allow a 90-degree turn from the hallway into the room. A doorway 36 inches wide requires a 36-inch hallway to allow for a 90-degree turn into the room. M 11

Door sills should be eliminated, recessed, or made of plastic tubing that compresses underweight. The tracks for sliding glass doors should be recessed so you can get over them easily.

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Straight line travel in a hallway with no turns, the hallway needs to be 32 inches wide if the doorway opens 180-degrees. In order to accomplish a 180-degree turn in a hallway, the minimum width of the hallway needs to be 48 inches, with 54 inches being ideal.

Figure 16 shows the minimum space needed for a 90-degree turn while moving in a forward direction. A larger unobstructed area is required to reverse the chair through a 90-degree turn.

In most situations, you will only need enough space for a 180-degree turn. Having enough space for a 360-degree turn is not essential.

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Floor Coverings Loose doormats should be avoided. Mats can be recessed to floor level.

The best flooring throughout the house is hardwood, linoleum, or tile. If you must have carpeting, low, very dense pile is recommended. Deep pile, shag carpets, or scatter rugs make maneuvering the wheelchair more difficult. Commercial indoor/outdoor carpeting is a good choice, especially for high-traffic areas.

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Communication You should have a telephone that you can reach while in bed. Depending on your physical strength, you may want to consider installing a phone in the bathroom. A cordless telephone is easy to carry M 12 with you around the house or yard.


Some people who are remodeling two-story homes consider installing an intercom system throughout the house. This has advantages since it enables family members to communicate without wheeling or moving to another level. It is also an added safety feature. Portable intercom systems and portable emergency alarms are also available for purchase. These can be useful if an emergency occurs when one family member is inside the house while the rest are outside, or vice versa.

Kitchen The kitchen may need major changes to make it wheelchair accessible. Since kitchen modifications can also be expensive, you’ll want to plan any changes carefully. For instance, you might want to use a pull-out cutting board or moveable table for food preparation rather than changing the heights of the counters. There are several reasons for looking at non-permanent adaptations: 1. The kitchen is usually shared by the whole family. You’ll want food preparation and cooking spaces that meet all family members’ needs. 2. It’s less expensive. Many of the new types of storage units are now on the market and are less costly than buying new built-in cabinets. 3. It isn’t permanent. This applies to homeowners as well as to renters. For renters, the advantages are obvious -- you can adapt your kitchen without changing the apartment permanently. Homeowners need to consider re-sale value of their homes. Many adaptations you make will be assets for any cook, but your home’s re- sale value can be reduced if your entire kitchen is remodeled solely for the use of a cook with a disability.

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Specific Changes Keeping these ideas in mind, let’s look at some specific ways the kitchen can be changed to make it accessible for a person in a wheelchair.

1. As with other rooms, you’ll need a minimum of 5 feet of clear space for turning the wheelchair. The floor should be absolutely level, so that you aren’t constantly braking while at a work center. 2. Countertops where you’ll be working should be no more than 30 to 32 inches high. Counters over a dishwasher or other built-in appliance may have to be higher (this provides work space for a standing cook). 3. You’ll want at least one area that’s no more than 27 inches high, with knee space beneath. This is handy for mixing and preparing food. You can lower standard cabinets by cutting off the baseboard and mounting them flush to the floor. Or you can buy sections of countertop separately and mount them at the desired height. 4. You don’t have to use a countertop. You could use a heat- resistant lap board, a drop-leaf table, a pullout shelf, or roll-out mixing center (if you use a roll-out center, locking the casters will help maintain stability). Whatever you choose, make sure there are plenty of electrical outlets nearby for mixers and other small appliances. Refrigerator-Freezer A side-by-side refrigerator-freezer model is the most accessible for a person in a wheelchair because many of the compartments are within reach and the doors aren’t as wide so they’re easier to maneuver around. Adjustable and slide-out shelves also increase accessibility.

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A frost-free model will save you lots of time and trouble. If possible, have some counter space next to the refrigerator. This allows for a place to set out containers and food products.


Cooking Center The most accessible cooking arrangement for someone in a wheelchair is a built-in wall oven with burners set onto the counter with leg room underneath. The wall oven can be set into the wall at an appropriate height for the user. The best height will allow your legs to be under the oven door when it is opened. A countertop next to the stove is important for easy transfer of heavy pots and pans.

The cook top should be no higher than 32 inches. Controls should be at the front or side, where they’re easy to reach and try to avoid installing controls that you might turn on accidentally.

If you have a standard oven/stove top unit, the best place for it is at the end of a counter. This way the oven racks can be approached from the side, versus leaning over the front of the open oven door.

Staggered burners (below), will make it easier to see and reach the entire cooking area. A small mirror mounted on the wall behind the cook top will allow you to check the progress of food on burners out of your line of sight. You can use pan holders to stabilize pans as you stir.

Electric ovens and burners are preferred to gas because open flames can ignite clothing.

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Microwave ovens can be very handy for several reasons. First, they can be mounted at almost any height or position. Second, the doors usually open to the side, giving you easy access. Third, you can get push-button controls and a door that pops open at a touch, so you need little strength to operate these machines. Fourth, although the food and the dish it’s on heat up, the oven itself remains cool, reducing the chance of accidental burns. There are now many recipes and prepared foods on the market that make it possible to fix almost any kind of food in your microwave in a relatively short amount of time.

A toaster oven can be another handy small appliance, especially if you choose not to remodel the entire kitchen. Toaster ovens come in various sizes, and could allow the infrequent cook a way to heat up and bake small dishes without relocating the full- size oven. It would be a good option for a renter.

Kitchen Sink The sink should be low enough for you to reach (not more than 32 inches high), fairly shallow, and placed so that you have knee room beneath it.

Pipes under the sink should be insulated to prevent accidental burns. A garbage disposal is a convenient feature, but make sure it doesn’t take up too much knee room and that it, too, is insulated.

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A one-handle faucet control is an important sink feature. They are much easier to operate, especially when your hands get soapy or greasy during clean-up. A thermostatic control on the faucet will keep the M 16 water below a certain temperature, helping to prevent accidental burn


A retractable spray hose allows you to fill pots on the counter, rather than lifting a water-filled pot out of the sink.

Dishwasher A dishwasher makes clean-up much easier for everyone. To make it easy for you it’s important to make sure the dishwasher is placed so that you can use it. You need enough room to get around the open door, if necessary. The best placement for a dishwasher is next to the sink, on the right if you are right-handed, or on the left if you are left-handed. Storage Storage is important in every area of the accessible home, but it’s especially important in the kitchen. One general rule to keep in mind is to store heavy things low and lightweight items higher. You can use reachers/grabbers to bring light items down from shelves.

Another general storage rule is to store things where you are going to use them. Put cleaning supplies by the sink, mixing bowls and utensils at the mixing area. It requires forethought to figure out the best location for an item, but such organization pays off in the long run.

Here are some other ideas to use:

1. Glide-out shelves in base cabinets can allow easy reach for pots and pans.

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2. A pantry with shallow shelves keeps canned goods and other staples handy. Install a rack on the door for extra storage. 3. A Lazy-Susan installed in cabinets can allow you to reach items would be stuck at the back of a cabinet. 4. A pegboard on the wall is a convenient hanging space for utensils. 5. If you are remodeling a kitchen, you can use standard wall cabinets, but hang them lower to be within reach. You should be able to reach at least the bottom shelf while sitting (usually not more than 17 inches above the counter). 6. You may want to set up a rolling cart with cleaning supplies. This can be stored in a broom closet and moved to the area you need to clean. 7. A rolling cart can also be used for setting or clearing the dinner table. Bathroom The other room that is likely to need major changes is the bathroom. The first essential requirement of an accessible bathroom is that it’s large enough to be comfortable for the user. Ideally, you should be able to wheel in, close the door, approach the sink, tub or toilet, use them comfortably and turn to wheel out without backing up. As with the entrance to other rooms, you’ll need a clear entrance of 30-32 inches, with 34 inches preferred. It’s helpful if you can approach the door without turning.

If you have difficulty shutting an inward-closing door once inside, consider reversing the door to close outward. This can also be a safety feature if you ever need assistance, because your chair won’t block an outward-closing door. You could also use a sliding door.

If you remodel the bathroom, plan placement of the different facilities according to which side of your body is strongest for transfer.

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Toilet There are two common types of toilets: one-piece, which are floor- mounted and don’t require the tank to be mounted on the wall, and two-piece, which have a tank mounted on the wall and a bowl mounted on the floor. There are also units available that are wall mounted with no floor connection. Some floor models can be located in the corner, which saves space.

The recommended height of an average toilet is 16 to 18 inches depending on your preference and ability to transfer. A wall-hung toilet will give you toe space for the wheelchair footrest. If you have a floor-mounted toilet, the pedestal will have to slant back abruptly near the floor to allow room for the footrests.

Supporting rails to assist in transfer should be placed 8 to 10 inches above the seat, be firmly fixed and able to support up to 250 pounds.

Depending on your level of injury, your ability to transfer and your skin, your Craig Hospital therapists will help you decide what type of bathroom equipment you will need. Some people will be using a shower M 19

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commode chair that is a plastic coated chair used for bowel programs and showers. For people who are able to transfer and sit up without help will use a raised toilet seat and a shower bench. Talk with your therapists about these equipment needs. Whatever you are using at the hospital by the time of your discharge will probably be similar to the equipment you will need at home. Commode Chair

Bathroom Sink There are two basic types of sinks, wall hung and countertop units. If you have a wall-mounted sink, you may need to lower it. Before lowering a wall-mounted sink, you’ll need to check out the drainage requirements of your home or apartment to make sure the changed position will allow adequate drainage. The sink must be hung securely since you probably will lean heavily on it.

It doesn’t matter whether the sink is oval, rectangular, or triangular. The most important considerations are height, width and accessibility.

The sink can be approached from the front by rolling underneath or from the side. If approached from the front, it’s important for the drain to be near the back of the bowl rather than in the center, so that the hot water pipes underneath are out of your way. If you use an existing sink, the pipes must be covered with insulation. American Standard and Crane provide lavatories specifically built for the wheelchair user. These include a concave front that allows you to come in close to the bowl. Also, this sink can be operated with a four inch wrist controlled handle and has a goose-neck spout with aerator.

Whatever sink you install, allow 29 inches so you can clear the bottom of the apron. The sink itself should be a maximum height of 34 inches from the floor.

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A one-handled, lever faucet control is probably the easiest to control. Faucets should be set a maximum of 18 inches from the rim of the sink to be within reach. A temperature control will help prevent accidental burns. If you want a mirror above the sink, it should be installed at a height of not more than 40 inches (measured from the bottom of the mirror). You can see yourself more easily if the mirror is set at a slant. A work surface next to the sink is handy for grooming supplies.

Bathtub/Shower Since you’ll probably only have one bathroom accessible for your use, you’ll have to decide whether to install a tub, a shower stall, or a combination of the two. Once again any modifications to your home including bathroom needs will be discussed and decided upon during your in-patient stay at Craig Hospital.

A shower should be large enough to accommodate a shower commode chair with large wheels. Ideally, the shower should be 5 feet by 4 feet to allow room to turn around while in the stall. Smaller spaces are acceptable as long as you’re able to go in and out of the stall in a shower commode chair.

So you can enter easily, the shower should not have a lip. Instead, a gentle slope leading toward the drain would keep water from other parts of the room. The best floor is glazed tile, one inch square, because it will give better traction.

A temperature control mechanism on the showerhead will prevent accidental burns. A hand-held, flexible shower head is recommended with a holder attached to the shower wall.

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Tub and Shower

Storage/Towels/Etc. Your medicine chest should be mounted so that the top shelf is not more than 50 inches from the floor. If it’s mounted over the sink (rather than to the side), it will need to be even lower. Towel racks, soap dishes, and electrical outlets should be installed not more than 40 inches from the floor.

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Other items can be stored in cabinets that you can reach from the sink and from the toilet. As with storage in the kitchen, you’ll want to choose cabinets that open easily and that have shallow shelves so you can reach all items.

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Bedroom Your bedroom needs to be large enough to hold essential furniture and to allow you room to move about and transfer on and off the bed.

Your bed should be the same height as your wheelchair and have a firm mattress for easier transfers. You’ll need at least a 3-foot clearance on one side of the bed in order to transfer. If your bed isn’t high enough, you can have it elevated on blocks.

Since floor space is a top priority, your other furniture should take up as little room as possible. You might want to consider built-in pieces. Storage under the bed is a possibility as long as there’s still enough toe space for you to get close enough to transfer. A bookcase headboard can eliminate the need for a nightstand.

Your closet should have a full front opening. Access will be easier if you can partially enter the closet in your wheelchair, which will be possible if you use bi-folding doors, accordion doors, sliding doors, or even a draw drapery. Tracks or guides used for sliding doors should be low enough not to prevent your entry. Make sure the closet doors are easy for you to open.

A full walk-in closet is ideal if the doorway is wide enough for you to enter. If the closet is large enough, you might even put a dresser or

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Clothing rods should be between 40 and 48 inches from the floor. Adjustable shelves are the most convenient -- you can mount them at various levels between 18 and 45 inches above the floor. Shelf depth should not exceed 16 inches. If clothes hooks are used, they should not be higher than 40 inches from the floor.

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other storage inside, conserving floor space in the bedroom itself.

Dining As with the kitchen, dining facilities need to be usable by the whole family. The ideal height of the table is 28 inches. You’ll need plenty of leg room under the table and about 30 inches of space at the table.

A drop-leaf table can be helpful in the dining room or to provide extra workspace elsewhere in the house. The drop-leaf provides close access when up but folds down out of the way when not in use.

Living Room Probably the most important thing to consider in the living room is that you have plenty of space to move around. There should be a clear path to allow you to move freely throughout the room.

If you like to transfer out of your chair while at home, buy furniture with firm cushions and arms at a height that will help you transfer. If you’ll be staying in your chair, you may want to buy furniture that’s at wheelchair for easier transfers.

Wall units with adjustable shelves can be designed to fit your needs. As mentioned earlier, make sure all electrical outlets, switches, and other controls are within your reach.

Finally, remember that thick carpets or lots of little rugs can make movement difficult for you. Hardwood or smooth tile floors are probably the best. If you do have carpet, choose something with a low, dense pile.

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Laundry Choose a front-loading washer and dryer. You’ll be able to reach the interior more easily.

Choosing a Place to Live

Obviously, two primary considerations in making this decision are money and your current living situation. If you already own a house, modifying it may be your best choice. If you don’t own but can afford to buy a house, you might decide to have it built to fit your needs. In some cases, you may not be able to afford to purchase a home and will want to survey your rental alternatives. In addition, you might want to rent before buying a home so you can decide which modifications are most important to you.

To help you make a choice, let’s look at some of the important things to consider about each option.

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Renting You may think that renting isn’t a good option unless you have no other choice. It’s true that you may have to look hard to find modified rental property. However, apartment complexes are required by law to include modified units in their design.

When you consider renting an apartment that is supposed to be “accessible,” find out what this really means. Some complexes claim to have accessible units, but really offer little more than a ground-level entrance and a larger bathroom. You may be able to ask specific questions on the telephone rather than visiting each complex personally.

Some important things to find out are: 1. Is there a level or ramped entrance? Is it cleaned in the winter? 2. What kind of appliances are in the kitchen? Where are they located? 3. Does the complex have a laundry facility? Are the washer and dryer front-loading? 4. Are the countertops in the kitchen at the appropriate height? Is there extra room in the kitchen for work areas? 5. What kind of parking is available? How close is it to your unit? Is it covered? 6. How large is the bathroom? Is there an accessible shower? Are grab bars installed near the shower/tub and toilet? 7. Where are wall outlets, light switches, and telephone jacks located? 8. How wide are the hallways and doorways? 9. Most importantly, what kinds of modifications will you be allowed to make to the premises? Will you have to pay for them yourself? Will they have to be removed when you move out? Although it’s probably best to start with places that advertise as accessible, you may have good luck with an individual owner who is willing to let you change and adapt areas to meet your needs.

Mobile Homes Mobile home living today offers an alternative to conventional housing. The major advantages are less cost, lower taxes, reduced maintenance costs, fully equipped interiors and if purchasing a new mobile home it can be constructed specifically for a wheelchair user.

Negative aspects of mobile home living are rapid depreciation of the value of the home, expensive space rent in mobile home parks, and a weaker overall structure than found in a conventional home.

Some manufacturers are beginning to recognize the need for specially designed mobile homes for the disabled. The options available in these barrier-free homes include wide interior doors with protector panels at the bottom to prevent damage to the wall by the wheelchair. All M 25

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hallways are 40 inches wide to allow easy travel throughout the home. Walls in the kitchen and bathroom are covered with vinyl for easy care. All switches are the touch control type and are located 36 inches above the floor. All of the wall receptacles are located 18 inches above the floor.

Mobile home living today offers much to the prospective home buyer and should be carefully considered before making a final choice as to what type of dwelling is chosen.

Remodeling If you already own a home, remodeling may be your best option. You might also choose to buy an existing home and remodel it for accessibility. The main things to consider before remodeling is how much work will have to be done, how difficult this work will be, and how much it will cost. If remodeling your current home will be very difficult or expensive, you could be better off selling it and buying another suited to your needs.

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Here are some areas that could present problems or expense in remodeling: 1. Uneven approach to house, or many steps leading into house, require extensive ramping. 2. Two-story house, requiring installation of a lift, elevator, or stair glide. 3. Hallways throughout that are too narrow. 4. Small rooms (particularly kitchen and bath). 5. Kitchen that requires total remodeling and all new appliances (i.e., buying side-by-side refrigerator, wall-built oven and countertop range and lower sink).

Of course, you can still choose to remodel even if all of these situations are suitable. The above list is simply a guideline to help you evaluate the difficulty and expense of remodeling.

Find a reputable builder to draw up plans and give you an estimate of the remodeling costs. You might want to get estimates and ideas from several builders so you can pick the best option.

Buying or Building a New Home Many of the guidelines apply if you are planning to buy or build a new home. If you consider buying a new home, you’ll want to evaluate its accessibility before purchase. Use the information in this section to determine whether the home you are considering is accessible and what changes you would want to make after purchase.

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Some builders are now designing homes to be wheelchair accessible. These may be condominiums or townhouses as well as fully detached homes. As with apartments, you will need to evaluate how accessible


these units are. The difference is that since you will be purchasing the unit you may be free to make changes to the interior. Remember that condominium and townhouse complexes usually have rules about altering the exterior of units. Check into these carefully before buying.

Having a home built to your specifications is probably the best way to guarantee you get exactly what you want. If you decide you want to build, sample floorplans are available from the Veteran’s Administration and other sources (see the Resource List at end of this section). Determine what options are most important to you.

Once you’ve decided on some general things you want or don’t want, talk to several builders for their ideas. As with remodeling, you’ll want to estimate all costs up front and have a contract with the builder to protect your investment.

You will also have to choose the property where your home will be built. This is another area to investigate carefully. Choose the lot before making a final decision on the house design. Take a look at the neighborhood also, paved roads and sidewalks can increase your mobility within the neighborhood.

Conclusion The information in this section is intended as a guideline to help you plan accessibility in your home. The checklist that follows is a handy collection of suggestions for basic accessibility which you could use to plan a new home or review an existing unit before moving in. The Resource List at the end of this section will help you find more information. Accessibility Check List

Ramps

32 inches wide. Level surface 4 feet wide at top & bottom 12 inches of ramp for one inch of vertical rise

Entrance

Level area 5 feet square

Garage

13 feet wide (at least)

Doorways

30 inches wide (at least)

Craig Hospital

32 inches wide Non-slip surface

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Outside Pathways

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Inside Doorways 30 inches wide Door handles 36 inches from floor Levers preferred to knobs Door sills Eliminated or recessed Hallways 36 inches wide Rooms 5 feet clear turning radius (at least) Flooring Hardwood or tile preferred If carpet, choose low, dense pile Switches, outlets 40 inches from floor Telephone By bed; in bathroom Kitchen Countertops

30 to 32 inches high

Food Prep Area 27 inches high (or less) Cooktop

32 inches high (or less)

Sink Refrigerator

32 inches high (or less) Insulate pipes beneath Thermostatic control on faucet

Washer/dryer

Front-loading models preferred

Side-by-side model preferred

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Craig Hospital

Bathroom Toilet

16 to 18 inches high (or less)

Sink

34 inches high (or less) Insulate pipes Thermostatic control on faucet

Mirror

Bottom 40 inches from floor Angled if possible

Medicine chest

Top shelf 50 inches from floor (or less)

Towel racks & toothbrush

holder 40 inches from floor

M 28 Door

Open outward


Resources

 Wheelchair House Designs, Eastern Paralyzed Veteran’s Association (EPVA), 75-20 Astoria Blvd., Jackson Heights, NY, 11370 (718)803-EPVA.  Accessible Home Designs, Architecture Solutions for Wheelchair Users, Davies & Beasley, Paralyzed Veterans of America (PVA), 801 Eighteenth Street, NW, Washington, DC 20006, 202-872- 1300, www.pva.org  Barrier Free Housing, Betterway Publishing Company, PO Box 219, Crozet, VA 22932, 804-823-5661  Universal Design: A Visual Guide. Liebrock & Terry, John Wiley and Sons Publishers.  Beautiful Barrier-Free: A Visual Guide to Accessibility, Liebrock & Behar, Von Nostrand Publishers.

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Š Craig Hospital 3425 South Clarkson St. Englewood, Colorado 80113

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Craig Hospital

303-789-8000

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craighospital.org


N

Equipment Patterns

 Bath Mitt................................................................................................3

 Bladder Drainage Equipment

n Leg Bag Straps..............................................................................4

n Leg Bag Strap with Detachable Button Band...................5

 Call Systems

n Home Hookup for Mercury Ball...............................................6 n Construction of Mercury Ball Call Device............................6

 Testing Device.....................................................................................9

 Dressing

n Dressing Loop...............................................................................10 n Adapted Shoe I.............................................................................10 n Adapted Shoe II.............................................................................11 n Chain Loops....................................................................................11

 Exercise Equipment

n Skateboard.....................................................................................12 n Skateboard Table.........................................................................12 n Wrist Exercise Cuff......................................................................13 n Wrist Exercise Board..................................................................13 n Stall Bars.........................................................................................14

 Lapboard..............................................................................................15

 Mouthstick...........................................................................................15

 Mouthstick Holder............................................................................16

 Suppository Inserter Cuff..............................................................16

 Telephone Holder..............................................................................17

 Transfer Equipment

n Transfer Loop................................................................................17 n Transfer Board Cover.................................................................18 n Med-Board Cover.........................................................................19 n Adapted Bicycle Gloves..........................................................20 n Wheelchair Bag............................................................................21

 Universal Cuff....................................................................................22

Craig Hospital

 Wheelchair Accessories

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N2

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Craig Hospital


Bath Mitt Bath Mitt: Cut one piece of terry cloth 12” x 10 1/2” for mitt. Cut one piece of terry cloth 5 1/2” x 4 1/2” for soap pocket. On one edge pocket, stitch small piece of hook velcro. Fold in raw edges of pocket and stitch to outside of mitt, leaving one long edge open. Stitch small piece of loop velcro on mitt exactly opposite hook velcro on pocket. This will fasten to hold soap in the pocket. Cut one piece of webbing 16” to 16 1/2” long. Attach 1” rectangular ring to webbing by folding strap 3/4” over ring and sewing with zig-zag stitch. Set 3 1/2” piece of hook velcro on strap next to ring. Sew 3 1/2” piece loop velcro on same side on opposite end of strap, 1” from end of strap. Cut a piece of vinyl 2” x 3” for stopper. Fold in half and sew to strap (on end with loop velcro), 3/4” into fold. Stitch all three sides of vinyl stopper. Punch a hole in the stopper and attach a 3” loop of vinyl lacing. Sew strap to mitt directly below pocket, the length of the hook velcro. To form side slit, turn raw edges under 1/4” and zig-zag stitch 3” up from webbing on each side. Fold right sides of mitt together, sew around curved edge down to 3” from bottom of opening.

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N3


Leg Bag Straps

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Craig Hospital

Leg Bag Straps: Upper and lower leg bag straps are made in the same manner. Two inch webbing, elastic and velcro are used for the upper strap. One inch webbing, elastic and velcro are used for the lower strap. Cut webbing the length of the distance around the person’s leg where strap is to be worn), plus 2 1/2”. Cut this webbing into two pieces, one of which must be at least 5” long. Cut one piece of elastic 3” long. Cut 2 1/2” piece of loop velcro and 2 1/2” piece of hook velcro. Sew elastic between two pieces of webbing, overlapping seams 1/4” and sew both edges with a zig-zag stitch Sew the 2 1/2” pieces of velcro on opposite sides and ends as shown in illustration. Sew two white plastic buttons on opposite side of loop velcro spacing 3 1/4” from center to center (for attaching leg bag.) Place two eyelets and vinyl cord at the end of the hook velcro, and one eyelet with vinyl cord at end of 5” piece of webbing as shown.

N4


Leg Bag Straps

Leg Bag Strap Leg Bag Strap with Detachable Button Band, Lower Leg Strap Only for One-Handed Leg Bag Emptying: Cut 1” webbing the length of the distance around the person’s leg where strap is to be worn), plus 1/2”. Cut this webbing into two pieces, one of which must be at least 5” long. Cut one additional 5” piece of white webbing. Cut one piece of 1” elastic 3” long. Cut velcro pieces, loop velcro - one piece 2 1/2” and one piece 5” hook velcro - one piece 2 1/2” and one piece 5”. Sew elastic between two pieces of webbing, overlapping seams 1/4” and sow both edges with a zig-zag stitch. Then sew the 2 1/2” pieces of velcro on opposite sides and ends as shown in top illustration. Sew the 5” piece of hook velcro onto the 5” length of the strap, on reverse side of loop velcro as shown. On the extra 5” piece of 1” webbing, sew the 5” length of loop velcro, using zig-zag stitch on ends and straight stitch on long edges. Sew two buttons 3 1/4” center to center on the detached 5” length of webbing which has loop velcro on back (see center illustration). Finish strap with eyelets and thumb loops as needed.

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Home Hookup for Mercury Ball: Use a double chime doorbell Depending on the doorbell purchased, it may have wire leads coming from it, a wire terminal, or a combination of the two. Direction included with the doorbell should state where to hook up the wires to the call ball and to the house current. The two wires normally going to the doorbell will go to the call ball. Construction of Mercury Ball Call Device:

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Craig Hospital

Solid sponge rubber coated ball

Woolworth’s or other variety store

Mercoid mercury switch The Mercoid Corporation 4201 Belmont Avenue Chicago,)llinois 60641 Part # 9507 SC http://www.nciwch.ncUmcrcoid.html

Hi-fi cable Switchcraft brand purchased from audio accessories merchant N6


1. Make slice in the ball from outer side to a point midway through the ball. Opposite the slice, insert an ice pick through the ball forming a channel which meets the slice.

2.

Separate the split portions of the ball and pluck enough sponge from inside the ball to form a “nest� for the mercoid switch in such a manner that the switch will be held perpendicular to the split-channel.

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Insert the exposed wire end of the hi-fi cable down through the channel. Cut the wires on the mercoid switch approximately l 1/2” from the switch and strip the wires. Connect and solder the wires of the switch to the wires of the cable and then position the switch in the “nest”.When the ball is tapped, the mercury should slide to touch the coils and thereby activate the switch.

4.

Place the electrician’s tape around the sliced axis of the ball. Plug the device into the call system or into the testing device (see accompanying diagram of testing device Grasp the cable approximately two feet from the ball.Tap all around the circumference of the ball in order to determine the most sensitive spot on the ball. Mark that spot. In the event a sensitive spot is not found, remove the tape and reposition mercoid switch. Re-tape the ball and again test for sensitive spot.

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Craig Hospital

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5. After the switch has been properly positioned and tested, tape the ball securely along the axis of the split and perpendicular to that axis.

6.

Plug the device into the call system and extend the ball down from a supporting arm in such a manner that the individual can easily touch the “sensative spot” with his or her tongue. Extra long cords can be made by splicing the cable. Testing Device

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Dressing Loop Dressing Loop: Cut a 33” piece of one inch wide white webbing. Fold over one end to make a 5 1/2” loop. Stitch securely. Cut one 6” piece of loop velcro and one 6” piece of hook velcro. Stitch loop velcro on webbing next to loop. Stitch hook velcro on opposite side and opposite end of webbing. Secure raw edges with zig-zag stitching, if possible

Adaptive Shoe I

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Craig Hospital

Adaptive Shoe I: Cut two pieces of shoe lacing approximately 10” long. Feed each lace through two pairs of holes. Repeat with second lace. (Refer to illustration) Combine all ends between 1” and 1 1/2” piece of hook velcro and a piece of vinyl (color to match shoe) same size. Stitch around to secure ends of lacing inside. Glue (or stitch on cloth shoe) a 1” x 1 1/2” piece of loop velcro on outside of shoe as per illustration. This can also be done by a shoe N 10repair shop.


Adaptive Shoe II Adaptive Shoe II Cut one piece of vinyl (color to match shoe) -1” x 3”.Cut one piece of vinyl -I” x 6” or 7” (smaller for children). With 1” x 3” piece, stitch in a 1” metal rectangular ring. Stitch (for cloth shoe) or rivet to shoe. Cut 2 1/2” piece of both 1” hook and 1” loop velcro and sew one piece on each and of 1” x 6” vinyl, on same side. Stitch or rivet vinyl piece to other side of shoe and thread through metal ring. Eyelets and a piece of vinyl lacing may be used on end of vinyl strip if needed. This can also be done by a shoe repair shop.

Chain Loops

© Craig Hospital

Chain Loops: Cut six lengths of two inch wide webbing, each 23” long. Sew together as a chain with an overlap of approximately 1 1/2”. Secure overlap with an X in a square stitch.

N 11


Skateboard

Craig Hospital

Skateboard: Cut one piece of 3/8” plywood - 16 1/2” x 8” (or wide enough to accommodate arm). Use 1 1/2” - 2” foam rubber for padding. Cover with fabric, stapling or tacking fabric to bottom of board. Sew loop and hook velcro to 2” cotton webbing for straps. Staple or tack straps to bottom of skateboard. Attach 1” sofa casters with screw or bracket mounts to underside of board.

Skateboard Table

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Skateboard Table: Skateboard table can be made from 3/16” to 1/4” Masonite or similar material.

N 12


Wrist Exersice Cuff Wrist Exercise Cuff: Materials:  One piece heavy leather - 9” x 3” One piece heavy leather - 2” x 1”  One piece two inch cotton webbing -12” long One piece two inch cotton webbing - 2 1/4” long Two rivets  One 1” D-ring  One rectangular ring - approximately 2” x 3/4” One piece 2” loop velcro - 7” long  One piece 2” hook velcro - 3” long Sew hook velcro on one end of 12” webbing and loop velcro on the other end, same side, of webbing. Cut thumb hole in center of larger piece of leather. Make it large enough to prevent pressure around thumb. Sew velcro/webbing piece on one end of larger leather piece, overlapping 3”. Rivet small leather piece on other side of thumb hole, placing D-ring between two rivets. Fold 2 1/4” piece of webbing through 2” rectangular ring and sew to the leather about 1 3/4” from edge. Pad inside especially thumb hole, with 3/8” adhesive foam or glue foam to inside of thumb hole.

Wrist Exercise Board

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Wrist Exercise Board: Materials:  3/4” pine  Vinyl or any durable material for covering.  One-quarter inch foam or cotton batting for padding. Webbing for six straps (long enough to hold arm on board). Loop and hook velcro. Cut wood according to illustration. Attach sides to base of wood. Cover top with padding and vinyl. Sew loop and hook velcro to webbing. Staple or tack straps under top. Attach padded top to sides as shown. N 13 Craig Hospital


Stall Bars

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Craig Hospital

Stall Bars: Materials:  1” E11 (2)  1” S.O. E11 (2)  1” Floor Flanges (4)  1 length of 1” Pipe (20 ft.)  3/4” Plywood Base (3” x 5’)  1/4 x 1 1/4” Flat Head Bolts (16) 1/4” Plate of 4” x 4” (4)  Four 60” strips of 3” webbing, made into belts Drill holes in 4” x 4” plates to match holes in 1” flanges. Recess four areas on bottom of plywood for plates to fit in, making the bottom level. Bring bolts up from bottom so that nuts can be tightened at any time and bottom remains level. Note: Webbing belts can be purchased at a surplus store.

N 14

Lapboard


Lapboard: Materials:  3/16” to 1/4” Masonite plexiglass or 3/8” plywood.  Approximately 10” of soft velcro for securing lapboard to each armrest.  Two 4” strips of hook velcro for board The width of the lapboard should not extend beyond the outside edge of the armrests. The chest cutout should be deep enough to prevent pressure on the skin. Suggestions: Although Plexiglas is more expensive it allows a view of the legs. This can be important if the lapboard is used with an electric wheelchair. Formica sink cut-outs can be purchased from a lumbar yard and used for a lap board with metal striping attached to the raw edges. If you do not have a jigsaw to cut out the lapboard, try calling the Industrial Arts Department at your local high school.

Mouth Stick

© Craig Hospital

Mouthstick: Materials:  1/8” bronze welding rod  3/4” doweling (or 11/16 if available) 2” long 3/8” doweling - 1” long  Rubber leg bag cap (optional for turning pages, typing, etc.)  Cut bronze rod to desired length Band rod to suit individual. Drill 1/8” hole part way through each piece of doweling. Glue welding rod into dowels as shown, using strong, permanent glue. Sand to taper large and and attach plastic mouthpiece. Mouthpiece should fit securely. A 1eg bag cap may be placed on the small end for page turning and typing. One cap may be obtained from the Craig occupational therapy or respiratory therapy department. They may be purchased from a hospital supply house in large quantities.

N 15


Mouthstick Holder Mouthstick Holder: Base: 3/4” plywood. Cut with equal 5” sides and 60 degree interior angles Locate center by drawing two lines at 90 degrees. Drill 1 1/2” inch hole in center. Drill approximately 1/2” to 5/8” through base Cut holder from 1 1/2” (outside diameter) plastic drain pipe extension. Length and top angle can be adjusted to suit individual needs. Install plastic pipe into base, using a ribbon of tub caulk to hold in place. Screw suction cups onto the bottom of each corner of base.

Suppository Inserter Cuff

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Craig Hospital

Suppository Inserter Cuff: Cut 2” vinyl: 11” for small cuff 12” for medium cuff 13” for large cuff. Fold in half lengthwise, wrong sides together and stitch. Attach 1” x I 1/2” plastic rectangular ring to one end. Sew tab on opposite end. Cut 1” velcro, one piece 3” and one piece 2”. Cut. heavy weight leather for pocket 3” x 3 3/4”. Assemble as for Universal Cuff (page 30), using zig-zag stitch Suppository inserter should be riveted into leather pocket as shown.

N 16


Telephone Holder Telephone Holder: Size: Length - 10 inches Width - 3/4 inches Materials:  10” x 3/4” aluminum strip  2” x 3” hook velcro and 2” x 4” loop velcro Rivets  2” rectangular ring Cut aluminum strip round off and smooth edges with file Drill holes for rivets. Sew velcro together with hook velcro facing one way, loop velcro the opposite. Fold loop velcro around rectangular ring. Rivet velcro to strip as shown. Bend aluminum to fit around palm of hand. Attach to telephone receiver as shown in illustration.

Transfer Loop © Craig Hospital

Transfer Loop: Cut 24” strip of one-inch white webbing. Cut 6 1/2” strip of one-inch white webbing. Cut 20” strip of two-inch white webbing and zig-zag stitch ends. Fold both strips of one-inch webbing in half. Slip a 1” rectangular ring in the fold of the 6 1/2” piece and sew the ends to the wide webbing. Slip the 24” pieces through the ring and sew the ends to the wide webbing.

N 17


Transfer Board Cover

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Craig Hospital

Transfer Board Cover: On double thickness rip-stop fabric, with right sides together trace with chalk or marking pencil around transfer board, adding 1” on sides and bottom and 4” on top for seam allowance. Cut through both thicknesses of fabric. With right sides of fabric together stitch 3/4” scam, starting 4” down from top edge around to 4” down from top edge of other side. Fit board as you would a pillow case. It should be very snug to keep from slipping. If it is too loose remove board and stitch a fraction of an inch closer until snug. Singe all raw edges with a candle to prevent raveling. Turn right side out. Cut one piece of 1” loop velcro and one piece of 1” hook velcro - both pieces 1/4” smaller than width of board. Turn in outside edges of 4” extension. Fold 4” piece of extended top end of one side of cover to the inside about three times until it extends 1 1/4” longer than the board. On outside of fabric, sew the 1” loop velcro through all three folds. On the other side of cover, turn in outside edges and fold 4” top end piece four times until it is even with the top edge of the board. On the inside sew the 1” hook velcro. The loop velcro will turn in over the board and the hook velcro will attach to it to close end, making a snug transfer board cover.

N 18


Med-Board Cover

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Med-Board Cover On double thickness rip-stop fabric with right sides together, trace with chalk or marking pencil around board to be covered, adding 1” on sides and bottom and 4” on top for seam allowance (illustration B). Cut through both thicknesses of fabric. From same fabric, cut one facing piece matching top portion and extending 2” below handle fitting (illustration C). Measure and mark area for metal fitting attachment opening on wrong side of facing (illustration C). Pin facing to one of the cover pieces with right sides together Stitch on drawn lines for fitting and 1/4” on both sides of center line to top end of fabric (illustration C). S Stitch around fitting space twice. Cut and clip to corners (illustration D). Singe raw fabric edges with a candle on all pieces to prevent raveling. Turn facing and cover piece right side out and stitch long edges of facing to cover piece. Fit both cover pieces right sides together and stitch approximately a 3/4” seam from 4” down at top edge around bottom and and ending 4” from top edge on opposite side. Fabric should be very snug when fitted to board. If it is too loose, remove from board and stitch a fraction of an inch closer until it is snug. When snug enough, turn right side out. There is now a solid side of fabric and a side with an opening for the fitting attachment with a 4” extra flap on N 19 Craig Hospital


the top ends. Take one piece of 1” loop velcro and cut to 1/4” less than the width of the board. Turn in outside edges and fold the 4” piece of fabric 2 1/2-3 times toward the wrong side of the fabric until it extends 1 1/4” longer than the board. Pin folds in place On the outside of the fabric sew the loop velcro through these folds. Take two pieces of 1” hook velcro and cut to 1/4” less than the width of the split sides of the other cover pieceTurn in outside edges on split sides and fold down to below the stitched side seams until even with the top end of the board and sew hook velcro piece to inside of fold. Sew a piece of 1” hook velcro down the inside edge of one split center flap and sew a 2” wide piece of loop velcro to outside of other split side. This will close tightly to keep the board from slipping.

Adapted Bicycle Glove

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Craig Hospital

Adapted Bicycle Glove: Cut fingers of glove off as close as possible to hand of glove. On the back, cut completely through the knit. Measure along cut and around finger opening. Cut a strip of 3/4” wide vinyl the length of this measurement plus 2”. Fold vinyl in half lengthwise. Lay 1” x 1 1/2” piece of hook velcro in place as shown. Stitch along cut edges. Clip corners of vinyl almost to the center to miter. Go back later and stitch other two sides of’ hook velcro. Cut a piece of loop velcro, 1” x 2”, and cut matching piece of vinyl. Stitch loop velcro to vinyl. Stitch loop velcro/vinyl to glove as shown. Repeat procedure for other glove.

N 20


Wheelchair Bag Wheelchair Bag: Fabric suggestion, denim cotton duck, lightweight canvas. Webbing can be substituted for straps. Cut on piece of fabric 18” by 26” for bag. Cut one piece of fabric 7 1/2” by 16 1/2” for pocket. Hem large piece of fabric at both ends by turning under 1/4”, press; turn under 3/4”, press; stitch. Hem piece of fabric for pocket. Top hem: turn under 1/4”; then 1/2”; stitch. Bottom hem turn under 1/4”; stitch. Place hemmed pocket piece 12” from top of large hemmed piece and stitch along bottom of pocket. Topstitch down the center of pocket, with double row of stitching close together. Fold right sides of bag together and stitch 5/8” seam along both sides. Cut fabric for straps 16” long by 2 1/2” wide. Turn under 1/4” on long edges; press; fold in half lengthwise, press and top stitch. Turn ends of straps under 1/2” and top stitch Sew straps to bag, approximately 1” from seams, front and back. Sew securely.

© Craig Hospital

N 21


Universal Cuff

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Craig Hospital

Universal Cuff: Cut one-inch white webbing: 11” for small cuff, 12” for medium cuff 13” for large cuff. Attach rectangular ring to one end of webbing by turning webbing under 1/2” and sewing. Sew leather tab (3/4” x 1 5/8”) on opposite end. Punch a hole in leather tab and tie a 6” piece of vinyl lacing through hole. (This is only needed if persons will be putting on cuff themselves.) Cut 3” piece of webbing for instrument pocket. Sew one end with zig-zag stitch to event raveling before sewing pocket to cuff. Sew pocket to cuff, leaving one end open. Cut one 2 1/2” piece of hook velcro and one 2 1/2” piece of loop velcro and stitch to cuff as shown.

N 22


NOTES

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Š Craig Hospital 3425 South Clarkson St. Englewood, Colorado 80113

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Craig Hospital

303-789-8000

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craighospital.org


Power Wheelchair Care & Maintenance Guide Every Day

If you are using your power chair continuously for 2-3 hours per day, you need to charge the battery everyday. If you use your power chair only occasionally, for example one hour or less per day, then charge the battery when the charge level is at 50%

Every Week

If you are using the sip & puff drive systems, clean the sip & puff tubing, coupling and straw at least once per week. Pull part the pieces, clean with mild soap and rinse. Let all pieces dry before putting them together.

Every Month

1. 2. 3.

Clean chrome, painted areas and upholstery surfaces with mild soap and water. Use chrome cleaner available at an auto parts store. Check nuts and bolts for tightness. Check locks for tightness at the tire.

Twice a Month

1. 2.

Check the gel cell battery twice a month for a tight seal on the terminals. Check tire pressure at least twice per month or any other time they look low. Recommended tire pressure can be found in the owner’s manual or on the side wall of the tire itself.

Every 3 Months

Clean battery terminals with a wire brush. Grease terminal clamps for lead acid battery only. Vaseline may be used as a lubricant.

Every 6 Months

1. 2. 3. 4.

Once a Year

Check over the entire power wheelchair and replace missing or worn parts. Call the vendor for ordering parts. NOTE: You will receive an owner’s manual from the wheelchair manufacturer. Check the manufacturer’s guarantee conditions before attempting any repairs to ensure that the guarantee conditions are not broken. In certain cases, the guarantee is no longer valid if the wheelchair has been “tampered with”. It is best to contact a local vendor or place of purchase with any questions when the wheelchair is not working properly.

Check wheel bearings for excessive play. This can be fixed by tightening the axle belt. All bearings are sealed and do not require additional grease. Lubricate joints in footrest, back, seat, and arm rests. Use silicone as needed. Tighten all nuts and bolts. Check the sliding back mechanism for recliners. Apply silicone spray to the plastic guides on the back. Check for breakdown in the foam on the backrest, especially at the top of the back.

© Craig Hospital

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Š Craig Hospital 3425 South Clarkson St. Englewood, Colorado 80113

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Craig Hospital

303-789-8000

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craighospital.org

Spinal Cord Injury Handbook