Outreach Winter 05-06 by Kim West

Winter 2005-06 Issue #18 A publication of the United Brachial Plexus Network, Inc.

●

More Kinesio Information ●

Nerve Grafting for TBPI

●

UBPN Prevention Brochure

Straight Talk with BPI Moms ●

2005 Camp UBPN Coverage 1

Winter, 2005-06

Winter 2005-06 Outreach Sponsor

CONTENTS 3 n President’s Letter 4 n UBPN Registry Notice 5 n Presidential Service Awards 6 n Nerve Grafting and Transplantation for Traumatic Brachial Plexus Injuries 8 n Kinesio Tex® Tape as an Adjunct to Treatment For Older Children with Brachial Plexus Injuries 10 n The Bradley Method® of Childbirth 12 n The Beneﬁts of Therapeutic Horseback Riding 13 n CAMP UBPN 2005 Review 19 n Brachial Plexus Injury Prevention Brochure:

This brochure has been perforated, allowing you to detach it and share it. You can also request additional brochures be sent to you by emailing (info@ubpn.org) or phoning the UBPN ofﬁce (1-866-877-7004)

21 n BPI Symposium Held at Johns Hopkins 22 n Straight Talk From Those Who Live It Each Day

UBPN, Inc. is grateful to the law firms of Morgan & Weisbrod, and Blume, Goldfaden, Berkowitz, Donnelly, Fried, & Forte whose generosity has made the publication and distribution of this issue of Outreach possible. Each of these firms has successfully represented numerous children with brachial plexus injuries, helping them financially to pursue happy, productive lives. Should you desire any information as to the legal rights of you or your children, or wish a referral to a law firm in your area that is experienced in representing children with brachial plexus injuries, contact either Les Weisbrod of Morgan & Weisbrod or John Blume or Carol Forte of Blume, Goldfaden, Berkowitz, Donnelly, Fried & Forte. MORGAN & WEISBROD PO Box 821329 Dallas, Texas 75243 1-800-800-6353 www.morganweisbrod.com BLUME, GOLDFADEN, BERKOWITZ, DONNELLY, FRIED & FORTE 1 Main Street Chatham, New Jersey 07928 1-973-635-5400 www.njatty.com

27 n Sarah’s Story: Life Without Surgical Intervention 28 n Starting A BPI Support Group 29 n In-Reach, Arizona’s Brachial Plexus Injury Network 30 n A Soldier’s Story: A Memoir 30 n In The Next Issue

UPBN Outreach

On The Cover:

A Camp UBPN highlight was the horse therapy demonstration. Each camper had an opportunity to ride a horse and learn more about this therapy. Camper Aubrey seemed to enjoy her turn! See more camp coverage on pages 13-18.

UBPN News

OUTREACH is a publication of the United Brachial Plexus Network, Inc.

UBPN, Inc. 1610 Kent Street Kent, OH 44240

Toll Free or Fax: 1-866-877-7004 Web Site: http://www.ubpn.org Outreach Founder: Bridget McGinn Executive Editor: Nancy Birk Editor and Design: Kim West UBPN, Inc. is a national organization with international interests which strives to inform, support and unite families and those concerned with brachial plexus injuries and their prevention worldwide. Outreach is produced on a volunteer basis. The appearance of information in the Outreach publication does not constitute nor imply endorsement by the United Brachial Plexus Network, Inc., its Board of Directors, the Outreach publication, nor its editorial staff. Readers should consult with trusted clinicians to determine the appropriateness of products or services for their speciﬁc needs. ©2005-06, UBPN, Inc. Please share the information in this publication freely, giving credit where due.

2004-05 UBPN Board of Directors Julia Aten, WA Nancy Birk, OH Courtney Edlinger, MI Peggy Ferguson, WA Cathy N. Kanter, CA Richard Looby, MA Kathleen M. Mallozzi, NY Karen McClune, WA Lisa Muscarella, AZ John Petit, WA Sabrina Randolph, CA Claudia Strobing, NY Judy Thornberry, FL 2004-05 UBPN Ofﬁcers Nancy Birk, President Richard Looby, Vice President Sabrina Randolph, Treasurer Kathleen Mallozzi, Secretary Cathy N. Kanter, Past President

President’s Letter What an exciting issue we have prepared for you! As with other issues, our goal with Outreach is to include articles written by professionals in their ﬁeld, interspersed with stories written by those sharing their experiences. We hope you enjoy the many photographs as well and take pride and pleasure in the accomplishments of members of our community.

Camp UBPN 2005

Our third UBPN Camp was a remarkable experience for everyone who attended. As you view the photos, you will see the joy that comes from finding another person who truly understands. Strong friendships have been forged that President Nancy Birk at the 2005 BPI Rally . will last lifetimes. We are already planning our next camp and hope to bring information to you about it earlier than we were able to do with the 2005 Camp. Combining camp with a National Rally and the opportunity to raise our voices loud and clear with Congress, added a level of difficulty, but the impact that we were able to make was definitely worth it! One of the highlights of camp was our closing ceremony – our Town Hall Meeting. The children at camp entered the room carrying the paper dolls decorated in our Hands Across America Project, in which many of you participated with your sponsorship of paper dolls. The paper doll chain ended as a hand print flag entered the room. It was truly a fitting conclusion to a Camp which took place in our nation’s capital.

National Proclamation Update

Even though we followed the requirements and had letters of support from people in the highest positions in government, we were not successful in gaining a Presidential Proclamation. Our request was passed on to Health and Human Services, where it moved no further. We did receive accolades from Health and Human Services, and you can read the letter on the next page from Secretary Michael O. Leavitt. We will continue to work toward a National Proclamation for Brachial Plexus Injury Awareness Week for next year .

Social Security Administration (SSA) Policy Conference

In late July, UBPN was invited to attend a Policy Conference with the SSA in New York City, along with the leaders of several other support groups who deal with neurological impairments like epilepsy, traumatic brain injury, and stroke. The purpose was to gather information about revising the guidelines by which the SSA determines disability. These guidelines have not been revised for more than 20 years. Kathleen Mallozzi, UBPN’s chair of the In Touch Program, and I attended the meeting. It was a 2 day conference that was not open to the public, but was actually a working meeting. There were about 25-30 people in attendance, most of them SSA employees who write policy.

continued

Winter, 2005-06

UBPN News

was able to make a presentation of what we felt needed to be changed in the guidelines. First of all, I explained that we needed to be listed! We are not listed and the decisions and criteria are based on bringing together bits and pieces of the guidelines that pertain to bpi. Current criteria focuses on impairment in TWO extremities, which makes it most difficult for our families to get the services they need. I explained that the guidelines for bpi ought to look at two things: severity of the injury and secondary issues emanating from the primary injury. For adults, I asked them also to look at the long term issues faced by a lifetime of compensation. They seemed to really listen. We had very positive feedback from the SSA and from others in the audience. The guidelines will take about another year to revise. I will update you as I learn more.

Spotlight On Moving Forward

I want to close by giving you an update on our ‘Spotlight On’ segment that we are preparing. We have almost raised all the funds necessary and will begin scripting this short documentary in the next few months, with production slated now for 2006. We hope to have it hit the airwaves for our next Awareness Week in 2006. Hopefully, this time, we will have that National Proclamation to go along with it!

A Successful Non Proﬁt

And, finally, we have very important news to share. Every 501c3 exempt organization must undergo a review of the first 5 years of their existence and a determination is made about whether the organization is following the guidelines to be a national charity. UBPN has just received the letter from the IRS indicating that we have passed their criteria. This is a huge milestone in the life of a non profit and we are proud and happy that we ‘passed’. A huge thanks is due to our treasurer, Sabrina Randolph, for all her work in submitting our filing. Best wishes! Nancy Birk UBPN President UPBN Outreach

Please Register Online

After a couple of starts and stops, the UBPN Registry is ﬁnally up and available on the UBPN web site for your use (www.ubpn.org/Registry). The Registry is a great way to establish contacts with others in your area and will be helpful for support group leaders. Separate entries are provided for individuals, support groups, and professionals. You can choose whether and how much of your information will be available on our web site for the public to see. Over 250 entries have been received so far. Please be sure to complete as much of the entry forms as possible as it will help us when compiling demographic statistics that are needed to pursue grant funding. Please direct any questions about the Registry to web@ubpn.org.

UBPN News

Presidential Service Awards n

By Courtney Edlinger, Service Volunteers Committee Chair

BPN is pleased to announce that we have been approved as an Ofﬁcial Certifying Organization for the President’s Volunteer Service Awards! The President’s Volunteer Service Award recognizes Americans of all ages who have made a sustained commitment to volunteer service. The Award – issued by the President’s Council on Service and Civic Participation on behalf of the President of the United States – honors individuals, families and groups that have demonstrated outstanding volunteer service over a 12-month period or throughout their lifetime. Since September 2003, more than 11,000 organizations have signed on as Certifying Organizations and honored over 270,000 volunteers with the Award. To earn a President’s Volunteer Service Award, you must keep a record of your activities and hours of volunteer service. You can track your hours in a journal at home or on-line through the USA Freedom Corps Record of Service. Each family or group then submits its record of service to UBPN by contacting committee member Amy Theis (servicevolunteer@ubpn.org). She will review and verify your hours. Then, once you have the appropriate number of hours, she will order your awards! To be recognized, service activities should meet national or community needs in the areas of youth achievement, parks and open spaces, healthy communities, and public safety and emergency response. Activities should be unpaid and may not include court-ordered community service. What an excellent opportunity to create awareness for BPIs. We hope you’ll join us as we work toward our goal!

The following awards can be earned: Awards for kids: (ages up to 14) Bronze Level – 50 to 74 hours Silver Level – 75 to 99 hours Gold Level –100 hours or more

Awards for young adults: (ages 15-25) Bronze Level – 100- 174 hours Silver Level – 175-249 hours Gold level – 250 hours or more

Awards for adults: (age 25 and older) Bronze level – 100-249 hours Silver level – 250-499 hours Gold level – 500 hours or more

Awards for families and Groups: (two or more people) Bronze level – 200-499 hours Silver level – 500-999 hours Gold level – 1000 hours or more

Presidents Call to Service Award 4,000 hours or more over a lifetime (All ages)

For help finding volunteer activities in your neighborhood, check: http://www.presidentialserviceawards.gov/tgact/volopps/volunteer.cfm http://www.presidentialserviceawards.gov/tgact/volopps/volopps.cfm A few other suggestions that help spread the word about brachial plexus injuries: *Answering helpful posts on the message board *Volunteer activity at Camp *Volunteer hours serving on a UBPN committee *Public speaking and sharing information *Placing flyers/brochures in libraries or public health fairs *Writing letters to government officials *Writing letters to newspapers *Baking for police, fire fighters, EMS, etc. while delivering information about BPI If you have any questions, please e-mail Courtney (courtney@ubpn.org).

Winter, 2005-06

BPI Treatments

Nerve Grafting and Transplantation for Traumatic Brachial Plexus Injuries n Dr. Andrew

Elkwood

erve injuries can be devastating to both the form and function of various parts of the body. It is easiest to understand the nervous system by thinking in terms of electrical wiring. The nerves to the arms and legs are analogous to a complex series of wires that both bring electrical impulses from the brain to the muscles and from the sensory organs of the skin and joints back to the brain. In the case of the arms, the signal starts at the brain’s motor cortex, travels through the spinal cord, through 5 nerve roots (C5 to T1), mix and match in an electrical junction box – that we call the brachial plexus – divide into numerous terminal nerves, and ﬁnally end up at the muscles. The reverse is also true. Sensory impulses start at various skin and joint sensory organs, work their way back through many of the same nerves, through the brachial plexus, nerve roots, spinal cord and ﬁnally reach the brain. Injuries to these nerves can cause three major problems: paralysis, anesthesia (or lack of feeling) and pain. Any of these three symptoms may be indications for surgical nerve repair. It is imperative in understanding these repairs that one has command of an important basic fact. Both central nervous system (CNS) and peripheral nervous system (PNS) can be involved. Although they sound similar they behave completely differently, and hence, are treated differently. CNS consists of brain, spinal cord, and the spot where the nerve roots attach to the spinal cord – if these roots are pulled out of the cord; it is termed “avulsion”. CNS will not heal and cannot be repaired. Nerve UPBN Outreach

Note: To date, the nerve transplantation described in this article is for TBPI only.

root avulsions, however, can be treated. I’ll get to that later. The PNS can be injured in two basic ways. To understand this further, let’s get back to the wire analogy. A nerve is like an electrical wire, it has an internal part for conduction (the axon) and an outer insulation (myelin sheath). Unlike electrical wire, if the insulation is injured, electricity won’t conduct. Back to the two types of nerve injury. First, the nerve may be stretched and swollen (neuropraxia) – or, the nerve “wire” may be cut – even with the insulation remaining intact (axonotemesis). Neuropraxia usually gets better … axonotemesis doesn’t. The reason that surgeons usually wait several months before performing nerve repair is to see if the neuropraxia or neuropraxic component will get better on its own. If, after several months, the nerve does not get better on its own, then surgery is often indicated. Let’s go back to our analogies. Think of the nerves and muscles of an arm similar to an electric garage door opener. Electricity comes from a wall socket in the ceiling above the door, travels through a cord to the motor, which pulls a chain that lifts the door. Think of the wire getting to the socket as the spinal cord, the plug as the nerve root, the cord as the nerve, the motor as the muscle, the chain as a tendon, and the door as your arm. Any one of those components may be injured, and they are all repaired differently. Unlike a garage door, if the nerves are repaired too late, then it will never work. This is vaguely analogous to an old rusted motor that won’t run, even if the power 6

is restored. If the house current is out (i.e., spinal cord injury), there isn’t much that can be done to repair it. If the plug or outlet is broken, we can always get an extension cord and plug into the outlet over the next garage bay. When we perform this maneuver in the human body we call it “neurotization.” We can plug into various outlets: a cranial nerve, an intercostal nerve or even the other arm. If the cord from the outlet to the garage door motor is cut, we can go down to Home Depot, buy some wire, and make a splice. Surgically, we call that “nerve grafting”. If the motor is out, we can run a chain to the motor in another garage bay, or if that is not available, we can replace the motor. The former is a “tendon transfer”; the latter is a “muscle free ﬂap” This is the point that our analogy begins to fall apart. There is no human Home Depot that we can go to. Spare body parts are few and far between. … Let’s talk about nerve grafting. There are a few nerve spare parts in the body. The most commonly used donor nerve is the “sural nerve”. This is a small and relatively unimportant nerve that is the workhorse of microsurgery. Its only real function is to give some feeling to the outside of the ankle. Having a partly numb ankle is a small price to pay for regaining the function of a limb. What happens if more than one limb is injured, or if the injury is so massive that we don’t have enough spare parts? Until very recently, we needed to prioritize which nerves to repair. We would attempt to repair the most impor-

tant functions and leave the others as is. Surgeons have also been quite clever in devising ways of repairing many functions with just a few spare parts. As ingenious as these procedures may be, the surgery often leaves the patient with gross and moderately coordinated movement. These results can be life altering, but usually fall far short of normalcy. Recently, Dr. Susan Mackinnon devised a way to give surgeons a near limitless supply of spare part nerve – nerve transplants. Apart from ﬁxing more than one injured limb at a time, surgeons need not always need to prioritize, and can have a goal of more coordinated and more natural function in mind. riginally, nerve transplantation only made use of cadaver (or deceased organ donor) nerve. In our practice, we found that some patients had to wait an unacceptable period of time to obtain a donor organ. We now perform living related nerve reconstruction. Either at simultaneous procedure, or up to several days prior, a family member will undergo a procedure (often under spinal anesthesia) to harvest the sural nerves. This surgery can be done with three or four one inch incisions in the back of the leg. The surgery on the brachial

plexus patient can then be performed in a timely manner, hopefully, maximizing the final result. Nerve donors need to be otherwise healthy, well informed and a blood type match. The recipient needs to be on immunosuppressive medications for about a year, or until function returns. Immunosuppressive therapy is serious business and – in our practice – is handled by a nephrologist with an expertise in these matters. To date we have performed seven nerve transplants, the last four have been living related donor surgeries. Some of the results have been mixed, and some have been truly outstanding, exceeding our expectations. We are in the process of submitting these results for publication. Nerve transplantation is a new weapon in our armamentarium to battle nerve injuries. Living related donor transplantation is a new alternative to help maximize results. Although it is not yet mainstream, I feel that it will be in a matter of time. Like all medical developments, it should be subjected to academic scrutiny and healthy skepticism. I, however, am a strong believer, as are several of my patients.

Dr. Andrew Elkwood, M.D., is a plastic and reconstructive surgeon at the Plastic Surgery Center, which is based in Shrewsbury, NJ. Dr. Elkwood serves as the Director of the Institute for Advanced Reconstruction in Shrewsbury, NJ. Established in November 2003 by Dr. Elkwood and a team of leading-edge medical experts, the Institute is designed to facilitate patients with complex medical conditions requiring critical attention from more than one specialist. The first of its kind in the state of New Jersey, The Institute for Advanced Reconstructive Surgery is comprised of medical specialist in radiology neurology, plastic and reconstructive surgery, orthopedics, neurosurgery, head and neck surgery, ophthalmology and oral surgery. Dr. Elkwood has a graduate degree from Columbia University, enjoys a teaching appointment at the Robert Wood Johnson Medical School, and lectures and publishes on a wide variety of topics in the field of reconstructive surgery. He is certified by the American Board of Surgery and the American Board of Plastic Surgery in both General Surgery and Plastic Surgery. He is also a Fellow of the American College of Surgery (FACS) and a Fellow of the American Society of Aesthetic Plastic Surgery. Dr. Elkwood is a New York area native and is a graduate of the prestigious six-year combined BS/MD program at Union College, Schenectady, New York, and the Albany Medical College of Union University. Upon obtaining his medical degree, Dr. Elkwood completed a general surgery residency and plastic surgery fellowship at the New York University and Bellevue Hospital. He is chairman of the Division of Plastic Surgery at the Monmouth Medical Center. He has been featured on ABC, CBS, Good Morning America, The Learning Channel and the Discovery Channel. Dr. Elkwood was recently featured in a New York magazine cover story as one of the most promising talents in plastic surgery (October 6, 2003). 7

Recruitment Notice Mothers’ Experiences Caring for Children with Brachial Plexus Injuries

Cheryl Beck, a Professor of Nursing at the University of Connecticut, is conducting a study on mothers’ experiences caring for their children with brachial plexus injuries (BPI). The purpose of the study is to understand what it is like to be a mother of a child with a BPI. In order to provide better care and support for these mothers, clinicians need to know what women experience on a daily basis caring for their children. All mothers 18 years of age and older who have children with BPI are invited to participate in this study which will be conducted over the Internet. Mothers will be asked to describe their experiences caring for their children. If you are interested in participating in this study or wish to ﬁnd out more about it, please contact Dr. Cheryl Beck directly at the University of Connecticut. Her e-mail address is cheryl.beck@uconn.edu.

Keep Outreach Coming to You! Please let the ofﬁce know of any change in address. The post ofﬁce charges UBPN a considerable sum of money for forwarded mails and especially for “unable to forwards.” It would save valuable funds if UBPN has your mailing address changes in advance. You can phone in your address changes by using UBPN’s toll free number at 1-866-877-7004 and leave a message, stating clearly and slowly your new address, or you can e-mail the change to info@ubpn.org. Winter, 2005-06

BPI Treatments

Kinesio Tex® Tape as an Adjunct to Treatment For Older Children with Brachial Plexus Injuries By Audrey Yasukawa, OTR/L and Trish Martin, PT

This article follows an article from the Spring 2005 UBPN Outreach publication on the use of Kinesio Tex® tape for infants with obstetrical brachial plexus injury.

A thorough evaluation of the child with obstetrical brachial plexus injury is critical to assess speciﬁc areas of weakness, abnormal movement patterns, and alignment concerns. Tests to determine boney alignment and innervation are also key in targeting primary concerns and treatment areas. In addition, children may have had one or more surgeries; including nerve grafts, muscle transfers or even in older children, boney surgeries. Kinesio Tex® tape, developed by Dr. Kenzo Kase in 1973, is an elastic, cotton tape with an adhesive backing.. Dr Kase felt that muscles and other tissue could be treated by outside assistance and developed a new type of tape. The tape is latex-free and can be worn for 4-6 days continuously before removal. The tape is manufactured with a ten percent stretch on the tape on the adhesive backing and can be stretched to 40% longer than the resting length. Kinesio Tex® tape comes in beige,

red, blue and black and widths from one inch to three inches. Kinesio tape may be used to support a weakened muscle, limit hypermobility in a speciﬁc area, facilitate optimal alignment for improved effectiveness of a muscle group, and provide stability proximally to maximize grading and control of movement. Speciﬁc muscle imbalances can be minimized through the use of Kinesio tape. For many techniques, Kinesio tape is applied muscle origin to insertion to facilitate or support a muscle and muscle insertion to origin for a fascial release or acute injury. The Kinesio Tex® tape may also be applied as a mechanical assist to promote optimal alignment. As the infant develops with ongoing treatment and care, there still may be some residual muscle imbalance or lack of innervation. By the time the child reaches two years of age, there may be minimal changes noted with muscle re-innervation or strength and the possibility of surgical intervention is higher. A detailed medical history, including all

Patricia (Trish) Martin, P.T. is a physical therapist specializing in the treatment of infants and children with orthopedic and neurological involvement as well as in lower extremity biomechanics, casting, splint fabrication, and taping. Trish received a Bachelor of Health Science degree from the University of Kentucky in 1980. She worked at MetroHealth Medical Center and has continued in pediatric private practice for 23 years. She is NDT trained in pediatrics (1988). Trish has been a course assistant to Beverly Cusick courses on lower extremity biomechanics splinting and casting since 1990. Trish has been taping for twelve years and using Kinesio Tape for eight years. She became a Kinesio Taping Instructor in 2001 and teaches courses on Kinesio taping and taping for alignment in children and adults. Trish is currently Manager of Satellite Therapy Services for the Cleveland Clinic Children’s Hospital for Rehabilitation. Contact: PMartin827@aol.com Audrey Yasukawa, OTR/L Certiﬁed Kinesio Tape Instructor, is currently Chief of Occupation Therapy at La Rabida Children’s Hospital in Chicago. Audrey was a pediatric resource clinician at The Rehabilitation Institute of Chicago for eight years and assisted in the coordination of the upper extremity Botox Clinic as well as several research studies. She is pediatric and adult NDT trained. She has over 20 years experience with upper extremity casting. UPBN Outreach

previous testing, is essential to prioritize treatment options. To determine an appropriate treatment program, it is critical to perform a comprehensive evaluation of the distal arm, shoulder joint, scapula, and proximal kinetic chain structure. The therapist can then establish an appropriate treatment plan and goals. One of the major problems observed in children with OBPI (obstetrical brachial plexus injury) is the muscle imbalance of the shoulder joint and to a lesser extent, the elbow and the wrist. The therapist must have a thorough knowledge and understanding of upper limb anatomy and biomechanics. The scapula forms an important link in the kinetic chain mechanism, which transfers through the arm and hand for functional skills. Maintaining a stable scapular platform allows for the development of a better base for shoulder function. In addition, the proximal structure, the trunk, is closely related to shoulder function. Decreased scapular stability and strength to raise the arm overhead may cause compensatory patterns of movement. These may include increased lumbar lordosis with abdominal weakness and humeral abduction with deltoid and upper trapezius shortening. The position of the scapula on the rib cage inﬂuences a child’s ability to raise his/her arm. Thoracic posture, as well as the scapular alignment, is critical. Look at thoracic ﬂexion and spinal alignment. There may also be asymmetry, with shortening of the trunk on one side. Assess the position of the scapula (i.e. elevated, abducted, adducted, downwardly rotated, upwardly rotated) at rest and also dynamically in reach and weightbearing. Generally the child will present with

weaker external rotation cuff muscles, which will dynamically influence the ability of the child to actively obtain full supination with the elbow extended. The humerus may need to be placed in more external rotation to allow muscle force vectors to align properly. For example, if the humerus is in internal rotation, the deltoid muscle insertion is displaced anteriorly. The anterior deltoid may then function to provide more horizontal adduction, middle deltoid provide flexion and posterior deltoid abduction. Decreased mobility into full elbow flexion or extension, forearm supination, wrist radial deviation and wrist extension with finger extension may be present. There may be decreased muscle strength of the elbow flexors, extensors, forearm supinators and muscles of the wrist and hand. In considering options and prioritizing areas for use of Kinesio Tex® tape, look at the influence of proximal alignment and stability first. Remember to tape not more than three areas at a time, to allow the child to accommodate to the change in alignment. Any movement requiring minimal to moderate assist of the therapist, may be influenced by taping. If moderate to maximal force is required to obtain or maintain a position, the therapist should consider use of other adjunctive interventions (Botox, serial casting, static or dynamic splinting) before using Kinesio Tex® tape to facilitate movement. References: Alexander R, Boehme R, and Cupps B. 1993. Normal Development of Functional Motor Skills: The First Years of Life. Tucson, Arizona: Therapy Skill Builders. Cash M. 1999. Pocket Atlas of the Moving Body. London: Ebury Press. Kase, Kenzo; The Illustrated Kinesio Taping Manual. Martin, Trish; The Use of Kinesio Tex ® Tape as an Adjunct to Treatment For Children with Brachial Plexus Injury, UBPN Outreach, Spring 2005. Sieg KW, and Adams SP. 1996. Illustrated Essentials of Musculoskeletal Anatomy. Gainesville, Florida: Megabooks, Inc. Yu CC, Wong FH, Lo LJ, Chen YR; Craniofacial deformity in patients with uncorrected congenital muscular torticollis: as assessment from three-dimensional computed tomography imaging; Plast Reconstr Surg. 2004 Jan; 113(1):24-33.

Taping Protocol

A thorough evaluation needs to be initiated, including resting position of the involved arm and active movement in all positions. Look at trunk, shoulder girdle and upper extremity range of motion and limitations.

Alignment and movement patterns need to be assessed in all functional positions, including sit, weightbearing in prone or sit position, in standing and transitions. Asymmetries in trunk and lower extremities may also be noted.

Determine which movement components are present and which are weak or absent. Vascular status, including indications of swelling and discoloration, needs to be assessed.

Initially a tape “patch” is applied to an area of the trunk (often upper back) to allow assessment of skin reaction to tape. A barrier, like a light coat of Milk of Magnesia, is applied to skin prior to taping to protect skin. Allow barrier to dry before tape application. This patch is removed by the parents in 4-6 days and skin reaction is assessed. If parents note increased irritability or skin redness around tape, patch may be removed earlier.

Abdominal obliques may also be taped to facilitate trunk stability and alignment of trunk over pelvis in sitting and standing. This may also assist to stabilize the scapula. Tape is applied ASIS to contralateral (opposite) ribs bilaterally.

Alignment of thoracic spine is assessed to determine if thoracic ﬂexion is present, possibly in conjunction with an increase in anterior pelvic position or increased sacral angle.

Scapular position needs to be assessed and Kinesio tape applied to provide proximal stability and improved alignment. Scapular mobilization and myofascial release techniques may need to be done prior to taping.

Kinesio Tex® tape may be applied to the thoracic spine to facilitate decreased ﬂexion. Remember, the scapula rides on the rib cage and often scapular abduction will decrease as a result.

Kinesio Tex® tape may be applied to facilitate middle and lower trapezius to aid in shoulder stabilization and to decrease shoulder elevation. Tape is applied from origin to insertion. Taping is followed by functional activities to promote use of extremity in more optimal alignment. In this case, lower and middle trapezius are taped, followed by weightbearing and weightshift activities in sitting.

continued on page 27 9

Winter, 2005-06

BIRTH Decisions

The Bradley Method® of Childbirth n By Mary Holt

obert A. Bradley, M.D. (19171998) was an obstetrician who practiced in Colorado, and was the pioneer of the Bradley Method®. Dr. Bradley authored the book, Husband Coached Childbirth, fourth edition, published in 1996. Dr. Bradley, with the help of Jay and Marjie Hathaway, founded the American Academy of Husband Coached Childbirth® (AAHCC). The AAHCC not only ensures that the information about the Bradley Method® is available to the public, but it also teaches and trains the Bradley Method® to childbirth educators around the world. There are Bradley® teachers in 48 states, the District of Columbia, and in some other countries.

What is the Bradley Method®?

The Bradley Method® promotes natural childbirth, in which a woman’s husband or birth partner plays an active role in achieving an unmedicated birth. Advocates of the Bradley Method® know that a natural birth is safest for mother and baby. The goal of birthing naturally is to have a birth without the routine use of drugs or interventions. The primary goals of natural birth are a healthy mother and a healthy baby. To achieve these goals, it is ideal to begin preparations in the Bradley Method® in your sixth month of pregnancy. The classes are small to provide the students with individual attention. Couples preparing for birth are taught 12 units of material with review sessions offered until the baby is born.

Bradley Couple Sessions

Within the 12 units of instruction,

UPBN Outreach

there are discussions of what constitutes excellent nutrition, with detailed guidelines, to ensure that expectant mothers are eating the proper amounts of nutrients for a healthy pregnancy. A good diet is important in maintaining a pregnancy to term, and also provides an adequate weight gain for both the mother and the baby. Pre-natal exercises are demonstrated and moms to be are encouraged to exercise daily. The exercises are designed to keep a woman healthy, and prepare her body for labor and birth. It is well established that a well-toned pregnant body is better able to cope with the normal discomforts of the last trimester. Teachers discuss the importance of avoiding drugs during pregnancy, birth and breastfeeding, unless absolutely necessary. Childbirth classes focus on working with your body during labor. Emphasis is placed on relaxation, in all its forms: physical, mental, and emotional. There are demonstrations of all the techniques taught, and practice is encouraged in every class, so that couples are well prepared with many strategies for coping with the contractions of ﬁrst stage labor.

Care Provider Communication

Another particular focus of Bradley® classes is consumerism and positive communications with your care provider during pregnancy and birth. Parents must take responsibility for the safety of the birthplace, procedures, attendants and emergency back up. Class discussions take place so that the typical routine interventions are detailed. Choosing wisely means 10

that you must know the questions to ask. There are many choices available to laboring women, and couples are encouraged to obtain informed consent at the time of the proposed intervention. Education is necessary so that couples are aware of their choices for any speciﬁc intervention. Acknowledgment of one’s choices brings satisfaction in the birth.

Labor Tools

Physical relaxation during labor is one of the most valuable tools that we have to assist us with the pain of labor contractions. Practice makes perfect, so at home sessions are necessary for coaches and moms. The breathing that is advocated is natural diaphragmatic breathing. This is the type of breathing we do every day, which is normal, rhythmic, abdominal breathing. During contractions, abdominal breathing assists one into a peaceful and relaxed state. Normal breathing reﬂects good relaxation, and relaxation is the way to a more comfortable labor. Detailed in class is what to expect in labor. What are the signs of labor, how to cope with labor, and especially how to coach your partner, are important parts of a Bradley ® series. During labor, many techniques can be utilized to avoid unnecessary

pain. Walking about, changing positions, and mental imagery are just some of the topics demonstrated and discussed with students. The amazing body and its inﬁnite wisdom is cause for reﬂection and respect for the process that brings forth a child into the world. In the discussion of second stage, or pushing, again, a variety of positions are shown. The classic position is a sitting semi-squat, (a 45 degree angle for mom, and legs pulled back). Squatting is the best position for birth, since the diameter of the pelvis is increased; however, moms are encouraged to choose the most comfortable position during this stage, even if this means assuming more than one position at different times. The motto for pushing is to tune into your own body: push to the point of comfort, and hold your breath only till comfortable. Working with your body during second stage is not only energy conserving, but also very satisfying.

Preparing For the Unexpected Parents are also prepared for unexpected situations such as emergency

childbirth, and cesarean sections. Coaches are prepared for the rare occurrence of assisting at the delivery of a spontaneously born baby. In the anticipation for a vaginal birth, teachers must prepare students for the possibility of a necessary cesarean section. Dr. Bradley had a 3 percent cesarean section rate in his practice. Due to the high rates of cesarean sections today, 25 percent or more, instructors usually discuss some of the causes of unnecessary cesarean sections.

Immediately Following Delivery

The Bradley Method® endorses immediate and continuous contact with your baby after birth. Breastfeeding is taught within the 12 units, and various positions are shown. Especially noted are the many beneﬁts that breastfeeding offers, to babies and mothers, through this special bond. Indeed the American Academy of Pediatrics recommends breastfeeding for one year after birth.

Mary Holt holds a Master’s degree in Public Health from the University of Michigan. She has been married for 28 years to Brian, a chiropractor. Their son was born in a hospital 26 years ago. It was a medicated birth, and forceps were used at the delivery. He weighed 9 lbs. 3 oz. at birth. Mary credits her son’s birth with teaching her the right questions to ask when selecting a provider for care. She wanted to find someone whose goals and sentiments were similar to hers. Their second child, a daughter, was born using the Bradley method® of childbirth. With the assistance of a certified nurse midwife at an out of hospital birth center, she was birthed without drugs or episiotomy 23 years ago, (8 lbs. 13 oz. at birth). She feels that her daughter’s birth showed her what trust means in a labor and birth. The ease and comfort of a natural childbirth was a truly amazing experience. Mary trained as a childbirth teacher in the Bradley method® in 1985. Her third child, a daughter, was born in a hospital again using a certified nurse midwife, without drugs or episiotomy (10 lbs. 1 oz. at birth). This daughter’s birth proved how challenging and worrisome some pregnancies and labors can be. It reinforced for her how to be a good consumer and to make good choices with all the knowledge at hand. She was an uninjured baby that presented with a shoulder dystocia at birth. As a Bradley® teacher, she knew that squatting was the most desirable of the positions for a large baby, and standing squats was the position she chose for most of second stage. In the subsequent delivery of the shoulders, the midwife was also knowledgeable about other procedures for delivering shoulders. In this case, an assistant used the technique known as suprapubic pressure and her daughter was born without injury.

Postpartum

Post-partum care is another aspect of the 12 units of instruction. No one should come home from a hospital or other birthing facility without a clear understanding of what to expect as your body recovers from childbirth. In our student workbook, which every couple receives at the beginning of the series, there are pages detailing the responsibilities and issues addressing the question, “What do we do, now that we are at home?” Last but not least, there is the baby. Attention is given to the procedures and issues that come up during the newborn period. Apgar scores, jaundice, baby’s physical appearance, circumcision, cord care, bathing, and newborn care are some of the topics discussed.

Educated Choices

A Bradley® childbirth series is an all encompassing and empowering view of the choices that are possible when having a baby. In the United States today, there is still present this voice, which says that it is possible, doable, and desirable to have a natural childbirth. Childbirth can be joyous. A well-prepared mother and coach can achieve their goals after many weeks of preparation. The information that is given, and the choices that are made, lead to satisfaction and great outcomes for moms and babies.

For additional details about the Bradley Method or to ﬁnd an instructor near you, visit the ofﬁcial web page at www.bradleybirth.com

Winter, 2005-06

BPI Treatments

The Benefits of Therapeutic Horseback Riding n By India Lightfoot Blanding

Therapeutic horsemanship and riding provides a documented form of therapy that improves the overall functioning of the riding individual, physically, cognitively, mentally and emotionally. Horsemanship therapy improves the clients: ● Attention

span. Recognition and recall ● Sequencing skills ● Right/left discrimination ● Laterality ● Ability to follow directions ● Eye/hand coordination ● Visual-spatial awareness ● Motor planning skills ● Fine and gross motor skills ● Appropriate social interaction/communication skills ●

The speciﬁc effects of horseback riding can include:

● Stimulation: righting and equilibrium reactions; normal pos-

tural adjustment and postural fixation ● Inhibits tonic neck and tonic labyrinthine reflexes, gives positive supporting reaction ● Normalizes tone: reduces spasticity and/or stabilizes athetosis ● Encourages: good posture; symmetry of hand use; independent hand use ● Improves: sitting and standing balance; coordination; hand grasp and reach; social skills (attention following directions, etc); motor planning skills ● Reduces: (or prevents) contractures and tightness; physical and mental complications secondary to inactivity feelings of inferiority and helplessness ● Provides: general strengthening; specific strengthening (shoulder, hand grip, elbow, ankle dorsi, knee and hip); motivation Specific individual challenges can be addressed as necessary by means of specific exercises, games, and mounting procedures.

Joanie Boyko, an adult obpi, experiences riding a horse for ﬁrst time. This was a moment of great courage for her and it earned her the “Most Courageous” award at Camp this year.

Hi my name is Tess Gavagan and I am 11 years old. I have a BPI birth injury and I have been to almost every camp. This year we had it at The National 4-H Center and I’m in the Spur and Stirrup 4-H club with a horse project. I love horseback riding because I never really liked therapy. Now with riding, I can do my therapy without even realizing it is therapy! I have now been riding about a year and a half and it has been great! I have never been very good at sports that need a lot of arm strength. Horseback riding helps my arm get stronger but it is harder for me than most of my friends that ride. I had a lot of fun bringing my horse Suzi and my grandma’s horse Tootsie to camp. I think everyone had a great time watching me ride and getting the chance to get to feel what it’s like being on a horse. It was a lot of fun watching all the kids and adults getting to ride Suzi and Tootsie!

India Lightfoot Blanding gave a demonstration of therapeutic horseback riding at Camp UBPN 2005. She has been a riding instructor for forty two years and has recently established Lightfoot Consulting, an equestrian business consulting agency. She herself sustained a traumatic brachial plexus injury and has found great satisfaction in helping others to learn all that is possible with this form of therapy. She can be reached by phone at 301-774-3632 at her ofﬁce or by cell at 301-675-8691. Her e-mail is indialightfoot@aol.com UPBN Outreach

Winter, 2005-06

A Look Back...

Camp is something different for everyone who attends. For some it is an opportunity to meet new friends with similar experiences. For others it is a deeply emotional time that can lead to complete life changes. Whatever camp is to its attendees all would agree that there is something for everyone. Camp UBPN 2005 was no different. If you were looking to bring awareness to your elected officials the National Awareness Rally and legislative visits provided the perfect outlet. If you were seeking an emotional sharing the intimate sessions led by mothers, fathers and the injured fit the bill. If you were looking to have fun and see local sites, Washington D.C. fit that need as well. Although, unfortunately, not everyone from our community can attend each camp, we hope that those who have never attended will be inspired by this pages to give Camp UBPN 2007 a shot. It will be located in the northwestern United States and promises to be better than ever. No event happens by itself and this is never more true than with Camp UBPN. Camp UBPN is organized entirely by volunteers. And the majority of the 2005 camp was under the direction of Karen McClune, Camp Coordinator. A great deal of thanks should be given to Karen for her tireless efforts to make sure Camp was a success and enjoyable for all. Thank you Karen! In addition, the UBPN officer team and its board of directors all play a role in every UBPN activity. Thank you to their efforts as well! Thanks to everyone who made camp a reality: campers, speakers, and supporters! And, we hope that you will plan on joining us in 2007!

Above: (L to R) Illinois Senator Barack Obama, Joe Alsbury, Traci Alsbury, Illinois Senator Dick Durbin Below left: Cameron West with the medical aide of Representative Mike Turner. Below right: an Ohio contingent met with the medical aide of Senator George Voinovich.

A Remembrance of Camp UBPN From Washington State To Washington DC We traveled across country My daughter Tarakyn, and me In hopes to meet important people To make them aware Of things she’s gone through And hope that they care Many families will come From far and from near To share some of our stories In hopes that they hear And as we meet friends Older or new We must keep one thing in mind That even though we seem like many Just remember that there are more That we are just a small few Each of our stories Are different in many ways And remember that when times are tough Tomorrow is always a new day Please understand That none of you are alone You can always ﬁnd a friend Either through e-mail or by phone Encourage your children to stay in touch Cause as they grow It will mean so much Let them know that they are not alone That here at Camp UBPN They have found a place to call their own So as camp comes to an end I hope these new friendships Bloom and begin And until we can see you At another time or place I want you all to know You will be in our prayers And on our minds Here at our nation’s capital We have come I want to thank everyone involved For a job well done Thank you Sheila & Tarakyn Turner

UPBN Outreach

The BPI version of the hokey-pokey. Some of the adults with BPI’s show off their arms at Camp.

BPI representatives from throughout the United States converged on the National Mall for a BPI rally. The ﬁrst of its kind!

A highlight of camp was a trip to the National Zoo, including panda sightings.

Back by popular demand from the 2003 Camp was the sports clinic led by Stephanie Zweig.

Consider a Donation to UBPN, Inc. or for UBPN Camp 2007 You can make a real difference in the lives of those dealing with brachial plexus injuries by making a tax-deductible donation. Your donations support communication, education and support services that directly help the brachial plexus community. With your help we can continue to reach infants and adults w or another speciﬁc UBPN Program. Please complete and return the form below, along with a check made payable to UBPN, Inc. to start making a difference right away. As UBPN is a non-proﬁt 501c3 charitable organization, your contribution is fully deductible under IRS guidelines. You may also make a secure, online donation via PayPal.com. The account is donation@ubpn.org. No amount is too small – all contributions make a difference.

Name: ___________________________________________

I would like to make a donation to UBPN, Inc. of the following amount:

Address: __________________________________________

❏ $15 ❏ $25 ❏ $50 ❏ $100 ❏ Other: $ __________

City: ______________________________________________

❏ Please contact me about estate and planned giving.

State: ___________

Please make my donation in honor of:

Zip: ________________

____________________________________________

Phone: ___________________________________________

Thank You! You will receive conﬁrmation of your donation by mail.

UBPN, Inc., 1610 Kent Street, Kent, OH 44240

E-mail: ____________________________________________ 15

Winter, 2005-06

Rally

n o n r Mt. Ve

UPBN Outreach

s t f a r C

Sess

ion

Tow

Fun

n H all

Winter, 2005-06

UBPN thanks the following, who donated generously to Camp:

Hands Across America Donors:

Cleo Acker Carol Albanese Rebecca Allen Julia & Scott Aten Louise Beaulieu Josh Birk Kathy Booth Lauren Brooke Jones Linda Brosnan Teri & Larry Brown Cheryl Carlson Chicago BPI Group Tara Doria Kimberly Dunning Jennifer Engelhardt Diane & John Fallon Peggy & Steve Ferguson Brenda Fincher Ron, Michelle, Zachary & Carter Fix Tracy & Dean Folse Paige & Melissa Fritch Paula Gallette Sally Glick Zaidra Grimes Tanya Jennison The Kanter Family Mary Lou Lachowsky Cara Locket Rich Looby Kathleen Mallozzi Ralph Mallozzi Ralph Mallozzi Jr Suzanne Mallozzi

Aaron McClune Karen & David McClune Ashley Miller Dia & Les Miller Tim & Lynette Miller LeAnn Missana Lisa Muscarella Leslie McKibben Priscilla Morgan Sarah Myers Lenni Porter Mary Pritchard Yolande Ramirez Cheri Shultz Cyndi Skidmore Doris & Mack Stallcup Kimberly & David Stallcup & Family Paula & Daniel Stallcup & Family Michelle Svetlitski Space Coast Group Laura Thomas Betty Thompson Judy Thornberry Dr. Sui Twe Laura Vecchio Tom & Carol Vecchio Paul Walker The Ward Family Chris White Terry & Andrea Winter The Wittenbrink Family The Yandt Family

Maura Kanter and her Girl Scout Troop 3093, from La Jolla, California, donated items for and assembled First Aid Kits for the welcome bags at Camp. This was a special project for this troop and we are grateful for their service. UPBN Outreach

Jeannette Allen Cheryl Beck Nancy & Tim Birk Blockbuster Inc. Doubletree Guest Suites, Seattle Dugan, Babij, & Tolley, LLC Chris & Bill DeBraal Jay DeLoach Epix Pharmaceuticals Fair Isaac Inc. Diane & John Fallon Peggy & Steve Ferguson Kathleen & Greg Garey Pat & Herb Gerhardt Lynne Glickman Margaret Johnson Cathy and Elliott Kanter Mark Kanter Lisa & Rich Looby Christa & Ralph Mallozzi Karen, David, Aaron & Ryan McClune Cori & Marty McCrone Major League Baseball® Meyer Charitable Foundation Lisa & Pete Muscarella Andrew Nalbandian Tina & Troy Neely Oberto Sausage Co.® Marlene & John Petit Pearl River Womanís Club Caroline Racine Saginaw Valley Regional 4C Lou & Ed Schmidt Scholastic Books Select Specialty Hospital Shearerís Foods, Inc. Lori & David Sheehy Starbucks Straightline Builders Tangle Toys Texas Rangers Madelaine Tolegian Trader Joes, Paciﬁc Beach, CA Lon Walters Kim & Jim West Christy Wittenbrink World Reach Inc. wristSpirit, Inc.

Winter, 2005-06

UPBN Outreach

MEDICAL Progress

BPI Symposium Held at Johns Hopkins n A Review by Richard Looby, UBPN Vice President

he answer to the question of what causes obstetrical brachial plexus injuries remains elusive. However, because of the efforts of Drs. Robert Allen, Edith Gurewitsch, and Allan Belzberg (pictured in photo at right, from left to right) the discussion and fact ﬁnding of that very question has begun. The symposium organized and presented in May 2005, by this trio of Johns Hopkins staff, brought together some of the most renowned brachial plexus surgeons, obstetricians, labor nurses, therapists, hospital administrators, and lawyers, who deal with this injury every day. In addition, support groups and families affected by this injury were invited to participate and speak, providing a valued perspective, that frequently is overlooked during scientiﬁc debate. The United Brachial Plexus Network (UBPN) lauds Johns Hopkins for the courage to bring this controversial injury out of the corridors of whispers and to the forefront of debate between specialists in search of truth and answers. Although there still exists a heated debate of causation, and also the timing of surgical interventions, it became very clear to all the attendees how very important compassionate, accurate and timely communication is to the families of patients who experience this injury. The lecture sessions were well organized and thoughtfully chaired. Controversial questions were not only welcomed, but were approached directly.

It was engaging to watch the spirited debate between birthing professionals in regards to the causation of injury. There are two camps of thought. One suggests that the injury can occur due to endogenous forces on the baby by the uterus. If the shoulders are stuck, the expulsive forces can drive the baby’s shoulder into the pelvis, stretching the brachial plexus, causing the injury. The other camp suggests that improper training for this emergency (shoulder dystocia) and the use of excessive traction (and other improper techniques) causes the stretching and tearing of the brachial plexus, resulting in the injury. Indeed, a video was presented that showed no applied traction to the baby and no obvious shoulder dystocia, which resulted in a brachial plexus injury (“Temporary Erb-Duchenne Palsy Without Shoulder Dystocia or Traction to the Fetal Head”, Allen and Gurewitsch Obstet Gynecol.2005; 105: 1210-1212). The injury was temporary, however, resolving in a few days. The timing for surgical intervention also was debated; however, most surgeons agreed that with a completely limp arm, surgical intervention as early as three months should be considered. One dissenting opinion was due to the suggestion that the donor sural nerve may still be too small to provide enough grafting material to be of benefit at that age. All agreed that formal PT/OT was beneficial. However, the benefits of newer therapeutic modalities, such as botox are still being studied. 21

UBPN members were thankful for the opportunity to attend such a well-organized symposium. We were also very appreciative to be able to take part in the lecture series, as well as the round-table discussions. We were thrilled that some of the families from our community (pictured at left) were invited to share their stories with the professionals who are most familiar with brachial plexus injuries. Their stories demonstrated the frustrations and the resilience of their children, who were affected by this injury. Truly, the standing ovation at the conclusion of their session indicated how important their message was to the medical professionals and just how touched those in the audience were. We feel that this opportunity to be a part of such an important, ﬁrst-of-its-kind symposium was invaluable to our organization and our community. It was the ﬁrst time our voices were heard on such a large scale. Accolades are due to the organizers of this symposium, as we feel that without their efforts, obstetrical brachial plexus injuries will continue to be assessed as an acceptable risk of childbirth. Instead, they are working toward reducing the majority of these devastating injuries, through direct collaboration within all medical disciplines and our community as well. We look forward to further collaboration and hope to contribute to their continued efforts. Winter, 2005-06

COMMUNITY Story

Straight Talk From Those Who Live It Each Day: Injured Mothers Answer Questions From Kathleen Mallozzi

Our straight talk panel this issue features brachial plexus injured mothers as they share their experiences and their thoughts and fears about both birthing and mothering. Who better to moderate the interviews than Kathleen Mallozzi, OBPI and mother to three and grandmother of ﬁve. Joining her on the panel are Jenny Bradley, Rachel Casalegno, Kathleen Herff, and Christina McCracken. Note: Ages of children mentioned date from the time of the interviews, which took place in October of 2005. Kathleen: In relation to your BPI, what were your biggest fears about becoming a mother or did you think being BPI was not important regarding your capabilities as a mother? Kath H: This may sound vain, but I wondered if anyone would love me the way I was – I felt so ugly. The ﬁrst thought in the hospital was “how will I hold a baby?” And now the one thing I think about often, and still do, even though I’m on my 4th child, is that I wonder when people watch me with my babies, if they are thinking “oh gosh, is she going to drop them?” Christina: Believe it or not, my injury never entered my head in regards to my being able to be a mom. This is partially due to the fact that I have infertility issues and we didn’t even know if I could be a mom. The other part was because I guess after living with my injury all my life, I tend to overlook

it as just something I’ll deal with as I always have. When I got pregnant with our first daughter, I was just starting to experience a bit of the pain associated with OBPI. After we lost her, everything regarding my arm basically flew out of my head and I concentrated on being able to carry a child to full term. It really wasn’t until after my twins arrived that I started thinking about the adjustments I’d have to make and now, after 7 months, I realize that I was just dealing with the tip of the iceberg. It’s actually now, having had 7 months of stress on my arm, that I’m thinking about how my arm is affecting and will continue to affect my parenting abilities. I’m terrified of what the future will bring. Jenny: Yes, I was fearful, more so in the early days after my injury, when I worried about everything in my future. I had Catie 8 years later and knew by then that I would cope as I had with

everything else. I was a bit worried, of course, and the early days were very difﬁcult – those around you can’t pass on their advice because none of them did it with one, non-dominant hand! I knew the BPI would be an issue but it’s like everything else with a BPI – you have to ﬁnd your own path. Rachel: My biggest fear was always wondering what would happen if I dropped my baby. I was right hand dominant and over-compensated quite a bit with my right side. I never did drop my child, thank goodness, but remember having to take breaks in between feedings, and carrying her in the car seat. Although, the fear was always in the back of my mind, I never let my injury stop me from doing things any normal parent would do.

Kathleen: Did you or do you think you should limit the size of your family due to your injury? Were you Jenny Bradley, aged 46, was born in London, England but has worried about pregnancy, been living in Christchurch, New Zealand since November 2000. She delivery and how your body has three children, aged 17, 11 and 6 – two girls and a boy. In Janucould physically handle it? ary of 1980 when she was 21, she was knocked off her motorcycle by Kath H: Absolutely NOT a 16 wheeler truck, suffering major injuries and a total BPI to her – nothing so far has slowed me dominant right arm. She has little feeling in her upper arm although down with injury. she can shrug her shoulder and there is a ﬂicker of biceps. She has no feeling or use of her lower arm or hand at all. She found UBPN in Christina: I never thought 1999 and she posts on the message boards as “jennyb”. She is happy about it before the last couple to have found some wonderful friends there who she considers ﬁrm of months. I’ve always wanted friends – TBPI, OBPI, and parents of OBPI. Another TBPI poster, a large family (what can I say, “lizzyb” along with Jenny decided to start a website for TBPI to cover I’m Southern) and really still their particular needs and because they felt that TBPI needed their do. But dealing with the twins own space where they could get a little rowdy! This site at www.tbpiand the almost constant pain I’m group.org has worked really well alongside rather than in competition now in from taking care of them with www.ubpn.org, which is what they hoped for.

UPBN Outreach

makes me think twice at least about the timing. I also worry that I might be shortchanging my twins because of my inability to do a lot of things with them. I know if I had more kids then it would be even worse. Oh, and of course, the fact that the likelihood of me having more multiples is extremely high and the thought of running around after another set of twins or higher multiples would make anyone pause. As for the pregnancy and delivery side, I still think of my injury as being limited to just my arm and since I figured my arm was going to have very little to do with these processes, it didn’t even enter my mind. Jenny: No, I didn’t, but I did almost subconsciously have the children 5 years apart. I think I would have found two or more toddlers at once difficult. There are of course disadvantages to this, not only three bratty kids who think of themselves as only children, but nearly 15 years non-stop diapers! Rachel: I don’t think at all that a woman should have to think twice about limiting the size of her family due to her injury. I chose to have only one child of my own because my motto is I will try anything once! I personally came from a big family and was the oldest of five children. I was always helping out with my siblings and when it came right down to it, my choice of only having one child had nothing to do with my injury. I think any woman is worried about her pregnancy even if she isn’t injured. My main concern was if I had a regular vaginal delivery that my child would not be injured the same way as I was, by forceps. I never really thought otherwise that my body wouldn’t be able to handle pregnancy because of my injury. Kathleen: What was the most difficult period for you physically taking care of children? Kath H: When they got to crawling stage. They are heavy. I call my babies monkeys, I lift them by one arm and they cling to my hip. When I had my 2nd, and they were 15 months apart, I had to get a

“ It hasn’t been easy, and I can’t pretend it has, but it’s like every other aspect of BPI – you do it differently than everyone else, but you still do it.” -- Jenny Bradley double stroller. I had to find the lightest, which was the brand “Combi”. I spent over $300 dollars on it but it was light enough for me to fold up on my own and lift it into my van. Now with my 4th, as I’m older and more painful, I went out and got the Combi stroller (light) that the infant car seat snaps into because I can’t carry the infant carrier anymore. It is way too heavy. My sister bought me a Chicco seat with straps on each side to carry him around in, up and down the stairs. I also found it’s easier to change a diaper on the floor and I use my feet to hold him still. Christina: Well, for me nursing was a problem because I could only figure out how to nurse comfortably on one side. I thought at the time that would be the worst of it – I was wrong. So far it seems that the older and heavier my twins get, the more problems I have. I have a great deal of trouble carrying or holding my kids for any length of time. It doesn’t help that my daughter is training for the 2024 Olympic Gymnastic team and keeps trying to do backbends out of my arms! The squirmier they get, the harder it gets for me too. I’m so amazed at myself when I get through yet another day of not accidentally dropping one of them on their heads. Jenny: Various times for various reasons – after the first baby, I did not find the early days so hard as I had worked out strategies, but the bigger and heavier they got, the harder I found it to carry them around. In and out of the car seat was very hard as they got bigger, I was lucky in that the area I lived in had shops and schools all within walking distance, so I didn’t need to use the car too much – the pushchair was a lot better for my 23

back! I got one with a huge basket underneath and could wedge quite a bit of shopping in there. Diapers were very difficult from crawling age on – they let you take the dirty diaper off, then flip over and scoot off chuckling, covered in unimaginable filth, then they sit down firmly on their bottom on the good carpet and look at you challenging – catch me if you can! It is almost impossible to hold down a wriggling baby and clean their bottom at the same time with one hand, and they learned this pretty quickly. I went through a lot of carpet shampoo – plus getting poo on the back of my good hand was awful. You try washing the back of your only hand! Rachel: Physically, my most difficult times were carrying my child when she was about 2-3 months in the car seat. That always added a tremendous amount of pain onto my neck and shoulders. I would just have to sit her down for a minute and take a break. Breastfeeding was difficult for me at first, because my injured arm would always fall asleep. Again, there are ways to help make it easier. I would sit on the edge of the couch and use a pillow to hold my arm up into position so my daughter could just rest her head on my arm, so the muscles weren’t getting as tired during her feedings. Nowadays, they have “boppies”! These work great for feeding times and I wish I had had one. Another would be when she was around the age of two and wanted me to pick her up a lot. I could do it although I would sit her on my hip a lot and trade hips in order to alleviate the pain. At this age when she would pull on my arm and want me to pick her up, it was frustrating because

continued

Winter, 2005-06

she was always tugging at the “bad arm.” Putting the car seat into the car was always a nightmare. I ended up getting two car seats so when my mother or mother-in -law would watch her they always had their own car seat. That way I didn’t have to switch it in and out every time I had to have a resolution for everything. The absolute most difficult thing I found raising a baby, was trying to do things with two hands. Holding a crying baby in your arm and trying to make a bottle, or trying to grab the telephone with the injured arm was the most frustrating for me. So we invested in swings, bouncing chairs – all kinds of fun things I could put her in to do those things. Kathleen: What tools/baby equipment did you find the most helpful and what was the most difficult for you? Were you able to breastfeed? Kath H: Baby equipment was NOT an issue for me other than the infant carrier being too heavy. But I do have to say bathing is difficult so my husband does it from birth to nine months when they are wiggly and then I bathe with

Rachel Casalegno is 34 and has a left OBPI. She was born and raised in beautiful Bigfork, MT and still resides there. She has been married for 14 years. She has one child of their own, Kayla age 8, and they are also raising their nephew Jordan, who is 13. Rachel found UBPN in 2002 and was so exited to ﬁnd out that she was not the only person with a brachial plexus injury. As a matter of fact, she says she was so excited that she cried because there really was support out their just waiting for her. She feels that the people she meets through UBPN are a library full of information and support.

them or they sit in a chair that has suction cups at the bottom that stick to the tub. I nursed my ﬁrst until ﬁve months, then I was pregnant with my second and had to do bottles (baby’s choice). My second, I nursed for 10 1/2 months and my third for 1 month and my fourth for only 2 weeks. It got harder with each one. I have to sit to nurse, carrying them was not an option. I bought enough bottles to run them through the dishwasher at the end of the day and I washed the nipples and caps in the sink. For some strange reason, ALL my babies preferred my injured side to nurse on. It did leave

Kathleen Herff has four children (ages 8, 7, 5 and 5 months). She is 36 years old and incurred her TBPI at the age of 17 in 1987, on what would eventually be the birthday of her 3rd child. It was a very serious accident and her boyfriend suffered a fatality. Her injury is an avulsion of C5, C6, and C7. Since she had triceps and no biceps, the doctors at the Mayo Clinic did a muscle transfer by utilizing the triceps to give motion to the biceps. She tells us that she had to retrain her brain to think about straightening in order to bend! She has no ability to push downward but does not have the ability to lift to 90 degrees at the elbow. UPBN Outreach

me with one free functioning arm! Christina: My La Leche League leader suggested I try using a sling to carry the kids in. It turned out to be my saving grace. I had a “snuggli” but it put too much pressure on my arm. With the sling, I don’t have any straps or contraptions on my injured side at all. All the weight is on my unaffected side. It leaves both my hands free and is very comfortable for me to wear. Up to now, my kids have no problem being in the sling so if I know I’m going to have to hold one of them for an extended period of time, I just use the sling. That so far has been the only item that has really been a help for me. The hardest thing so far for me has been using the infant carriers when the kids are bigger. I can barely lift either of the twins to get them in the car when they are in their seats. I’ve also lost so much strength in my hand these last few months that it’s almost impossible for me to put on enough pressure to use the release mechanisms and the handle releases. Jenny: When Catie was born, I could not bathe her myself with one arm and refused to let anyone else do it (I am mother, hear me ROAR!). So, for 3 months, she had no bath at all. I washed her on a towel. Once she could hold her head up, I put her on one of those giant sponge things in the kitchen sink – I couldn’t lift her in and out of the bath, it was too deep. She pretty much bathed in

the kitchen sink until she was quite old, unless she went in the bath with her dad. I sometimes bathed her in a bucket. My mum made me small padded rectangles that fitted under the baby when she was in her cot or pushchair that had handles attached near her head and legs. I could lift her up quite easily with these. There was no way I could easily wash, sterilize and make up bottles, so for me breastfeeding was the only option. I did not find it easy but had to persevere and I’m glad I did. It was much easier than bottles would have been. Rachel: The car seats were the most difficult for me to maneuver. It was especially difficult when my daughter was an infant and I would have to carry the car seat around with her in it. That was the cause of most of my neck and shoulder pain. The most helpful piece of equipment was having a swing, or a bouncy chair. I would put my daughter in it while I was busy in the kitchen getting dinner ready. It was great to have because I couldn’t hold her and do other things at the same time. I was able to breastfeed my daughter. It was easier if I were somewhere where I could prop a pillow up under my arm and have her lay her head on the pillow a bit. It really helped alleviate the stress being put on my arm and I felt more comfortable feeding her that way. Kathleen: Do you think it made any difference to your children that you have a BPI? Kath H: They just know I have an “owie arm.” I do have to elaborate on the fact that none of my children have ever said a negative comment or even told any friend, teacher or parent. I don’t think it bothers them or they see it as a “disability.” My son says to me once in awhile (he’s 7) that he wishes I hadn’t got on the motorcycle – he knows it hurt me. I find it to be a great learning experience for my children. I told them the truth and that is; “I didn’t listen to my parents when they told me to never to go on the motorcycle. Had I listened to them, I wouldn’t have gotten hurt.”

Christina: My children are so young yet that I don’t think it really makes a difference at this point. I really hope it won’t make a difference in the future, but I just don’t know. I often wonder what they will think and if they will feel short-changed in some way because mom can’t do certain things with them. I don’t really think it makes a difference in the way I parent in the sense that my ideas and plans are the same. However, it does make a difference in that I don’t get to spend as much physical one on one time doing things such as holding them and playing with them. It’s hard to sit and cuddle a child when they are in a playful mood and moving about and you are trying to hold on to them with one arm so they don’t take a nose dive onto the ﬂoor. Jenny: In some ways, yes. I found discipline hard because when a toddler is doing something you don’t want them to do, you say “No!” then back it up by removing the child from the situation. This gets harder as the child gets bigger – all of my kids tried me out and knew my weak spots! They are lovely children

now, but boy, did we have some battles when they were toddlers. I remember carrying Catie out of a shopping mall, wailing (Catie was the one wailing – although I was close!) and as my arm gave out, I had to put her down, and each time I put her down, she would run away. Joe and Ella both learned that awful trick of ﬂopping onto the ground and making it really hard for me to pick them up. You just have to be consistent and in the end it all comes together. Hopefully, I have noticed that all my kids are disability blind – that is, they don’t deﬁne a person by their appearance or physical issues. They have a much broader concept of what ‘normal’ might be. This to me is a tremendous advantage to them in life and one that can’t be forced. All of them have shown off my arm to their friends, who then crowd around and want to touch it, I think this is great. They are very proud of me and what I can do with one arm – that is a lovely feeling. It hasn’t been easy, and I can’t pretend it has, but it’s like every other aspect of BPI – you do it differently than everyone else, but you still do it.

continued Christina McCracken lives in Central Pennsylvania. She is 31 years old and the mother of 7 month old twins. Left OBPI, she says she always considered it a “minor” injury. She credits her father who taught her to be as “normal” as possible and told her to keep her injury a secret. However, now, as an adult and a mom of twins, she realizes she is now dealing with all the trials and problems being a BPI mom brings. She had never met or even heard of anyone else having Erb’s Palsy until she found UBPN last year. She says she really has no idea how extensive her injury is as she has never seen a doctor regarding her injury since she was an infant.

Winter, 2005-06

Rachel: I don’t think my having an injury has affected how I raise my children. I still do everything to the best of my ability and the older my children get, the more concerned they are about me. If we do certain things, they always ask if my arm is alright, or if I am alright. I think it has made them more understanding and caring towards others they see with injuries of other types. I would have to say “no, it doesn’t really make a difference to my children that I am bpi.”

do the other. I have no special equipment and truthfully don’t even know what is out there. Jenny: Well, now I have no little babies I don’t need adaptations. I just do everything one handed. And you need to look at the big picture – so parenting with one arm is hard – but ask your friends – parenting is hard, full stop. No one gets it easy. As far as housework goes, if my good arm gets tired, I stop work and the house is a mess. Who cares? Life’s too short and sweet Kathleen: How difficult is it to worry about cobwebs, to function as a homemaker sticky bits on the floor or and mother? What are your folding clothes. My advice biggest challenges? Do you is, if it hurts, stop doing it. have special equipment Rachel: I think being a in your home that makes mother has been my numhandling daily tasks easier? ber one challenge. The Kath H: The things I find biggest challenge I have difficult are opening jars and found is when I really hanging pictures. I use my want to dig in and clean feet to hold a jar and I open my house, my arm will it with my good arm. Cuttend to give out on me beting food is hard; I had the fore I want to. Painting my muscle transfer so I have no daughter’s room is a good Kathleen and Ralph Mallozzi are pictured with their grandchildren. Pictured from left (back) is Grace Mallozzi (19 months), Michael Fallon (8), Katie Fallon (4), and Megan Mallozzi (4). Center front is Jessica Fallon (11). ability to hold down anyexample. I think it took me more. Essentially, as a result four or five days to finish of that transfer, my triceps are now my biceps. When things three walls because I would really get that burning sensation are high on a shelf, I use my head to slide it on and then to my in my neck and shoulders from using the paint roller, and, knee and then down, does that make sense? I have no special yes, I was using the paint roller with my good arm. It just equipment in my home. I find it easier to dry my hair sitting tends to get a bit frustrating when you want to keep plugging down, I rest my elbow on my knee to blow dry my hair and away and you just have to stop and realize, the housework curl it. I have to admit that when my arm hurts, I have very will always be there. I remember a great friend of mine, little patience. I sometimes feel I can explode, but I just hold KathM, (yes you Kath!) once told me “When you pass away it in until it passes. My feet come in handy to take the place you don’t get the good housekeeping seal of approval on your of my hand: wrapping presents, changing a diaper, etc. Lifting tombstone, so why bother.” I always tell everyone that and, something heavy out of a cart can be hard, so I look for someyes, Kath, thank you for the great words of advice. Now, I one that looks nice and ask for help. I’ve gotten over that. I just don’t clean at all! (I wish.) Honestly, with any type of ask for help a lot. It was great when I was pregnant because injury you have to know your limits. I do a few rooms at a people would offer. time and try not to over do it. I have no special equipment Thank you for letting me be a part of this, I love to let in my house to help me although I do want to order one of people know what my challenges are in life, it helps me acthose, hmm ...what do you call them? Oh yes, a housekeeper! cept my injury that much more. Christina: I’ve always been very independent and able to Kathleen: Thank you all for participating in this project find ways of doing things myself. Now I’m learning I can’t and sharing your experiences. Your candid responses will do everything and I have to prioritize what is really important be of great service to the bpi community and bpi women for me to do when it comes to things that require the use of who plan to have families. It will alleviate some of their my arm. Do I change the blown light bulb in the overhead fears and help them prepare for their future as independent kitchen light so I can see to give the twins their baths or do I adults and parents. So many times parents have asked how trim the holly bushes that are overtaking my walkway? I’m their children will manage as adults and worry so much finding that I can’t be a homemaker and a mother at the same about their future. We know, from experience, that we mantime. One job has to be let go in order to have the strength to age the same as any other parent.

UPBN Outreach

COMMUNITY Story

Sarah’s Story: Life Without Surgical Intervention n By Mandie Soileau

hat encouraged me to write this story for Outreach are the lurkers on UBPN Forums that e-mail me asking questions about Sarah and her injury. Most say they just lurk because they feel out of place. They feel out of place because it seems that most posters have chosen a surgery route for their child, and their child is doing so well and has been able to avoid surgery. I used to be one of those lurkers, feeling out of place and afraid to post, until I realized that there were more like me. I decided that I would post and tell others my opinion and about Sarah’s progress for those who need to hear it and I wanted to share Sarah’s story in Outreach as well. I realize that every child and every injury is different but I feel that new parents should hear from many experiences, including those who have not had surgery. I will begin by saying that February 18, 2002 was both the happiest and the saddest day of my life. After 13 hours of labor and what seemed like an eternity of pushing, Sarah Olivia came into our lives. Relieved and exhausted, hearing my baby cry was music to my ears, I thought everything was perfect. When my obstetrician came to my bedside and explained the situation to me, I saw the sorrow in his eyes and felt the compassion in his voice. He explained that I had experienced shoulder dystocia with the birth and that Sarah had a brachial plexus injury. Of course, I had no idea what either of those was, so he took the time to explain each in detail,

but I still had no visual about what I was going to see. After we spoke, the nurse brought in my beautiful baby girl and explained the proper way to hold and swaddle her. Sarah had bruising from the top of her shoulder to her wrist and could only move her fingers. All I could do was cry and hold her close. A physical therapist, Lauren, was called in to evaluate her and teach us how to care for her once we got home. Before we could even get her to her first formal therapy appointment, at two months old, Sarah was already lifting her arm while lying down. We were ecstatic! Lauren is our angel in disguise, always having encouraging words and available at any time when we have questions. Sarah went to formal therapy four times during her first year, twice her second year, and so far, once her third. During her second year, we had four months of home occupational therapy, once a month, through the Early Steps program. We do therapy at home using playtime

as a distraction for the actual exercises that Lauren taught us. The local park is where the stretching exercises are done, on her own. We decided not to take her to a specialist because surgery was out of the question. Her recovery is too good to risk losing it, even for a short time. Now, at age three, Sarah’s injury is barely noticeable. There are a couple of things that we are still working on. For example, when she eats with her right hand, her elbow pops up a little, when she runs she holds her arm close, and she can not supinate 100 percent yet. Sarah shows no signs of even knowing that her arm is different, she is a normal, active three-year-old girl. Just because her injury is not as bad as others are, it has not stopped us from making others aware of this injury. The whole family wears the awareness bracelet and sports the car magnets, giving us the opportunity to explain what it means. I hope Sarah’s story gives hope to others to never give up. While every injury is different, our babies all have one thing in common, their parents love them and always do what they feel is best for them. Good luck and God bless, you are all in our prayers.

BPI Science Fair Project is a Winner! Elizabeth Beaulieu of Northern Maine explains her science fair project, which presented information about brachial plexus injuries, to an interested observer. Elizabeth received an Honorable Mention for this project from last Spring, 2005, when she was in the 5th grade. 27

Winter, 2005-06

COMMUNITY Support

Starting A BPI Support Group:

Within Reach Program of UBPN offers “support to the support groups” n Claudia Strobing, Within Reach Program Chair

recently came across a photo of my family at the first Support Group gathering for BPIs that we attended. The event was in a family’s back yard. They had a bar-b-que, sand art, rented “carnival games,” and many other everyday toys. There was a speaker, a lawyer, but anyone who didn’t care to join in just stood on the other side of the yard. It was a wonderful event with a generous turnout. I met lots of people that day, including a mom who was not only the first person I ever spoke to about BPI, but was also the person who helped me mount my first event as a support group leader. My first event involved a zoo, boxed lunches, a doctor, a presentation and questions on whether or not he could do evaluations. Oh boy! However, in preparation, I called several people from the BPI community with event experience. They were incredibly helpful. I find this to be a notable mark of our community – we help each other. Our Support Groups are the center of this assistance. Many of them meet once a year, some meet more often. And some of them have been quiet for a few years. However, they are still Support Groups. I took over as chair of Within Reach for UBPN last year and have fielded many inquiries regarding Support Groups. I would like to give some starting points for beginning a support group. The first step is that everyone should register on the UBPN Registry. This will help you begin a Support Group or it will help Support Group leaders contact you if you want to be part of a group. The direct address to add your information is www.ubpn. org/Registry. If you decide to move ahead with forming a local support group, please let me know. UBPN has created a special “Yahoo group” designed for Support Group leaders where we can exchange ideas and assist each other. Also, I am always available to answer any questions you have about Support Groups. Don’t forget – REGISTER NOW! UPBN Outreach

If you want to start a support group, there are a few things you should consider: 1. How often do you want to meet? a. often b. not so often *note: it isn’t how often you meet that makes a successful support group, it is the desire to connect and help others to connect that is important. If once a year is what you can envision, then once a year it is! Maybe you want to tie into awareness week or Halloween or a spring ﬂing. Whatever you can do, is what works.

2. What style of meeting do you want? a. potluck at someone’s house b. potluck at a park c. a big gathering that costs, per person, a certain amount (e.g., at a zoo or children’s museum) 3. Who will come? a. families b. just adults? 4. Do you want a speaker? a. lawyer b. doctor

c. OT/PT

d. another specialist

5. How will you finance your event? a. Potluck means that the cost is only for mailings and whatever you/your attendees are bringing. b. A big event invariably means more out of pocket expenses for the planner. c. Fundraising is likely not an option, unless you are a 501c3 (not for profit). 6. Do I have to register as a non-profit in my state to be a support group? How do I do it? a. No, you do not need to be a non-profit or a 501c3 to be a support group. However, if you are not a registered non-profit, you can’t do fundraising. You can, however, re-coup the costs of running an event. b. If you want to register as a 501c3, you should contact an attorney and an accountant and they will help you set this up. 7. Does UBPN have Charter Support Groups? a. No. UBPN looked into Chartering and decided that a more informal style of support group was more in keeping with our mission. b. You will be a support group unto yourself, though we offer all the support we can for you. c. Once you decide you want to start a support group, let Claudia (claudia@ubpn.org) know and you can join the yahoo group for support group leaders. It is a wonderful place to share and learn. 8. How do you find other families in the bpi world? a. UBPN’s registry b. UBPN’s events forum on the message board c. Distribute flyers to therapists and anyone else who might have contact with other bpi kids. d. Ask your ot or pt if they could contact their friends and if you could leave flyers in their offices. e. Find other ot/pt offices in the phone book and ask if they will distribute flyers. 9. Ask for help a. Don’t be afraid to ask someone to help you, even if they are not bpi. Your non-bpi friends will be honored to help you stuff envelopes or decorate your house. b. Many people may want to help, but don’t want to be in charge. Give them jobs to do!

Start small, even a gathering of three families is great. It doesn’t have to be a hundred families for it to be successful. Yes, there are some very large and active support groups out there, and perhaps yours will be too. But that is not how you need to start. The first step is deciding that you want to do it. Pick a date, time and place and let it go from there. And if you have more questions, you can always e-mail me at claudia@ubpn.org. 28

GROUP Spotlight

In-Reach, Arizona’s Brachial Plexus Injury Network n By Lisa Muscarella

n-Reach, is a fairly small, yet growing support group. Our group currently covers the state and we have members that drive 2-3 hours just to join our events. We recently had our third gathering on October 22, at Chaparral Park in Scottsdale, Arizona. Thirteen families were able to attend and enjoyed a special day in the park together. We barbecued hot dogs and hamburgers and each family brought a side dish or dessert to share. We were blessed with lots of sunshine (nothing new to Arizona), as it was a pleasant 80 degrees and a perfect day for making and eating snow cones! The kids thoroughly enjoyed each other’s company and were busy jumping in the bouncy house, taking their shot at the piñata, tossing water balloons, blowing bubbles, playing volleyball and just running around being kids. Our efforts are truly recognized when we see parents and children connecting, sharing their struggles and experiences with this injury, and see the joy and pride by parents in their children. It is amazing when you can meet a total

stranger and have an instant bond and understanding, based on your similar experiences. The group was thrilled to have two adults with brachial plexus birth injuries join us. They openly shared their experiences with many of us mothers – which meant the world to us. We were also treated by the attendance of a pediatric occupational therapist, who specializes in brachial plexus injuries and has worked with many of our children. Our group is still in its infancy and we have many plans for its continued growth. Currently we sponsor a yearly gathering, which we hope to hold biannually. In-Reach offers parent-to-parent support and information through personal phone calls and an e-mail group. Our members from Arizona visit bpi specialists in California, Texas, Pennsylvania and Massachusetts, which is helpful to parents when gathering

additional information and input. We recently obtained an 800 number, making it easier for those across the state to reach us. In addition, we are beginning to create a website for our group. In-Reach will begin taking a more active role in finding injured children and adults who are out there in Arizona, but do not know we exist. We recently printed business cards and plan to send out informational letters (about InReach) to all the therapists and doctors in our area. Our next gathering may feature an aqua therapist, as a member of our group has generously offered to share her new home and pool that is currently being built. One of our adult bpi members is pregnant with her first baby, so we also look forward to celebrating and rejoicing in the safe arrival of the little one in February! Our group would like to express our sincere gratitude to Bridget McGinn for starting the first brachial plexus injury support group in the state of Arizona. If you live in the local area and would like more information or to become involved with In-Reach, contact: Lisa Muscarella at InReach@npgcable.com (888) 472-4784. Winter, 2005-06

COMMUNITY Contribution

A Soldier’s Story: A Memoir n Review by Nancy Birk

Senator Bob Dole’s memoir begins with his childhood growing up in Russell, Kansas and moves to his military service in World War II, recalling his excruciating experience of suffering the grave wounds which left him with a traumatic brachial plexus injury. The book then chronicles the dark years of his rehabilitation, following his life until his entrance into public life and office. In a touching account of small town America, Senator Dole shares how the community of his home town pulled together the funds through many small anonymous donations that enabled him to have the surgeries and the rehabilitation necessary to regain some movement. For the first time in the life of a very public man, he shares the full story from his heart and his soul about the devastation of his injury and his difficult and challenging path to recovery and acceptance. We are afforded a very personal glimpse into the soul of a man who in the midst of much pain and suffering still devotes himself to serving the public good. All of us who share his struggle and his challenge of living with a brachial plexus injury will gain inspiration and hope from reading this remarkable story. For those with a family member with a brachial plexus injury, you will gain an insight not only into the physical aspects of this injury but also into the deep psychological issues faced by one with a traumatic brachial plexus injury. The book was published in late Spring, 2005 and is readily available at your local bookstore or favorite online bookshop.

Warm Greetings From Gréta in Iceland

In the Next Issue: Fathers Share their Experiences in the Straight Talk Panel

•

An Interview with Dr. Andrew Price

•

ROM Exercises

•

The Beneﬁts of Acupuncture for BPI

•

And MORE! From left: Nancy Birk, Tess and Sharon Gavagan, recently met with Senator Dole (top center) to discuss his book and have him autograph their copies of “A Soldier’s Story: A Memoir.” UPBN Outreach

Kinesio® Tape Protocol... cont’d from page 9

Kinesio Tex® tape can be applied to provide mechanical assist to align the shoulder girdle. Placement of tape is dependent on whether shoulder girdle is more internally rotated or more anteriorly tipped.

The humerus may be positioned in internal rotation. The pectoralis major may be tight and soft tissue release and fascial release techniques may need to be performed. Taping the pectoralis major insertion to origin in the lengthened position may improve alignment and mobility. This taping may be done in conjunction with facilitation of the rhomboid muscles.

Kinesio tape can be applied in a serpentine fashion along the radial wrist, forearm and upper arm. In tape application, consider ageappropriate developmental skills and movements required to obtain these skills.

Taping techniques are often combined for optimal results, however limit to three areas.

The humerus may also be displaced forward, in conjunction with limitation in the pectoralis minor. This may cause the scapula to be tipped forward, with inferior winging. The pectoralis minor is taped insertion to origin in a lengthened position. This taping may be done in combination with facilitation of the lower and middle trapezius. Kinesio Tex® tape is applied origin to insertion

Taping may also be done in conjunction with compression garments. In this case, Theratogs(T) are used to promote trunk stability and alignment.

Kinesio Tex® tape may be applied to promote external rotation. The tape is wrapped from medial epicondyle, around humerus to scapula in a serpentine manner, as the humerus is externally rotated.

The Ark Pediatric Compression brace may also be used in combination with Kinesio Tex® tape.

Facilitation of weak triceps can be done, taping origin to insertion. Position and tension on tape is dependent on goal. Facilitation of weak biceps can be achieved, taping origin to insertion.

The use of an immobilizer for the elbow may be combined with taping to scapula for stability and “forearm for (supination) omit” targeting the shoulder girdle to increase strength and decrease the compensatory humeral abduction.

Resources Kinesio Tape www.kinesiotaping.com for information, seminars, and distributors

Kinesio tape can be used in conjunction with a casting program. The elimination of elbow ﬂexion, by application of a long arm cast, facilitates a more normal movement pattern and promotes shoulder girdle strengthening.

The cast allows for overhead reach without elbow ﬂexion. Scapular taping may be added for stability.

Taping may be used in conjunction with electrical stimulation (NMES or TES) but electrodes cannot be placed over the tape. Determine required electrode placement and adjust tape accordingly. Tape can also be used during day and removed for night if TES is used.

ARK Brace www.arkpcb.com (Ruth Cofre) Theratogs www.theratogs.com (Beverly Cusick) TES www.tascnetwork.net (Karen Pape)

Winter, 2005-06

CHANGE SERVICE REQUESTED

United Brachial Plexus Network, Inc. 1610 Kent Street Kent, OH 44240

Awareness Items Order Form Ribbon Car Magnet Quantity

__________

x $5 = _________

__________

______ Adult

x $4 = _________

_____ Youth

UBPN Jewelry Ribbon Pin Quantity

__________

x $5 = _________

UBPN Ribbon Pins Quantity

__________

x $10 = ________

(Each bag includes 20 pins)

Total $ ________ Name: __________________________________ Address: ________________________________ ________________________________________ Phone: __________________ Please send check or money order payable to: UBPN, Inc. at 1610 Kent Street, Kent, OH 44240 Credit card payments are also accepted through Pay Pal <http://www.paypal.com>. The payment e-mail address for UBPN products is donation@ubpn.org. UPBN Outreach

PAID

DELAWARE, OH PERMIT NO. 47

Awareness Items For Sale! Ribbon Car Magnet – $5

Reaching Out 4 BPI Bracelet Quantity

NON PROFIT ORG U.S. POSTAGE

This is a new item for UBPN and the UBPN community helped pick the design and colors. It will be metallic silver and blue. Funds raised will go toward the Camp UBPN Sponsorship Fund. The center part of the ribbon magnet can stay with the ribbon or it can be removed to use as a separate magnet.

Reaching Out 4 BPI Bracelet – $4

Also a new item, these great silicone bracelets have debossed text that says REACHING OUT 4 BPI on the top portion of the bracelet and on the opposite side ubpn.org. A blue bracelet is available for adults. A youth-size (which will also fit small adult wrists) will be a marbled blue, aqua and white (see photo.)

UBPN Jewelry Ribbon Pins – $5

The UBPN Bell Pin is a long-standing tradition. Made of die-struck pewter with nickel plating for a shiny silver appearance, this pin is not only a beautiful accessory but could provide an opportunity to bring awareness to a an admirer!

UBPN Ribbon Pins – $10 for 20 pins

These handmade ribbon pins are an economical way to show your support and bring awareness to the brachial plexus cause. Packaged in quantities of 20, these pins are an ideal way to show your support and help your friends and family show support as well! 32