TBI Rehabilitation Manual

2018 PRACTICE BASED TRAUMATIC BRAIN INJURY REHABILITATION MANUAL

Jiri Pazdirek M.D And the team of the TBI Rehabilitation program at Sultan Bin Abdulaziz Humanitarian City in Riyadh

1 FORWARD Practice Based TBI Rehabilitation Manual For Healthcare Systems with Limited Resources It is with both enthusiasm and pleasure that I pen this forward for Dr. Jiri Pazdirek’s manual on traumatic brain injury (TBI) rehabilitation. This compendium of information was written for persons working in environments with limited health care resources and formalized systems of care for persons with TBI. The manual contains information that will be most helpful to those starting off in the field including trainees, physicians and therapists as well as those assigned to assessing and treating persons with traumatic brain injury who have not received specialized training. The main focus in this ambitious endeavor was to provide “in the trenches”, practical information on assessment and management of persons with TBI. The manual clearly focuses on persons with moderate to severe TBI given the complexities of caring for these patients from a medical and neurorehabilitation perspective.

Concussion/mTBI is only briefly mentioned in the context of making sure people understand about the continual of severity of TBI. Dr. Pazdirek brings a unique perspective to this manual due to his extensive work experience in Saudi Arabia where he was able to garner an in-depth understanding of the challenges of providing health care with limited resources to persons with more catastrophic TBI and other forms of acquired brain injury. Health care systems in developing countries tasked with assessing and treating this challenging population will find the manual a very good resource.

The manual will also serve as a good resource in areas where there may be limited access to core text references and other resources such as web access.

The manual is divided into 10 chapters which flow logically from early assessment and care to more chronic care issues. Throughout the manual, the author has painstakingly included multiple demonstrative pictures and to a lesser extent photos and diagrams. The pictorial side of the manual adds substantial depth and practicality to the value of the information provided to the reader. The illustrations and pictures attempt to focus on the most clinically relevant information for the provider. Although there is a significant emphasis on motor deficits and spasticity, the manual provides information regarding many other important areas of care including addressing impairments related to dysarthria, dysphagia, neurogenic bowel and bladder dysfunction, post-traumatic epilepsy, among other areas. The manual also provides a helpful short bibliography including webpage links to serve as additional resources for the reader.

My hope is that Dr. Pazdirek’s work will further improve the care of persons with more severe TBI in areas of the world where brain injury medicine knowledge and expertise is just starting to garner momentum.

Nathan D. Zasler, MD, DABPM&R, FAAPM&R, FACRM, BIM-C, FIAIME, DAIPM Founder, CMO & Medical Director, Concussion Care Centre of Virginia, Ltd. Founder, CMO & Medical Director, Tree of Life Services, Inc. Professor, affiliate, Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Richmond, Virginia Associate Professor, adjunct, Department of Physical Medicine and Rehabilitation, University of Virginia, Charlottesville, Virginia Vice-Chairperson, IBIA

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Dear Colleagues, Prince Sultan bin Abdulaziz Humanitarian City is a largest rehabilitation facility in the Middle East. This JCI and CARF accredited hospital was opened in 2002 and now has 450 beds in operation. It offers specialized comprehensive rehabilitation care including TBI rehabilitation.

I am a Rehabilitation Medicine consultant (Physiatrist), from Czech Republic who has been working in Saudi Arabia since 2005 to 2018. Our TBI rehabilitation program was started in 2007 with 26 beds and expanded in 2010 to 52 beds. I was honored to participate in the development of this program.

Working on a multinational rehabilitation team coming from around 30 different countries, we had a unique opportunity to exchange and compare approaches across various schools and cultures and blend it with American healthcare based policies and procedures. As non-native, English speakers, coming from around the world and working with Arabic speaking patients, we faced challenges related to proper communication and understanding amongst team members, families, hospital management, funders and other stakeholders in our complicated business.

Given the facts that around 20% of our staff turned over every year and with increasing number of young Saudi healthcare professionals joining our staff, there was a strong consensus that we needed significantly simplified practice oriented TBI rehabilitation manual for our “newcomers”.

This short book is the result of our effort, which is an extension of the work we did to develop a “minimal clinical pathway for TBI rehabilitation program” in Saudi Arabia that was presented as a poster at the 10th World Congress of the International Brain Injury Association in San Francisco 2014.

It is based on firsthand clinical experience with 800 unique cases of severe and moderate brain injuries in1500 admissions under TBI rehabilitation program between 2007-2017.

It is a project under development and any comments and additions from your practice would be greatly appreciated. Our main focus is for TBI rehabilitation care in countries with limited resources and TBI rehabilitation experience. Please feel free to adjust, edit or translate this work or use it in its current form if you find it helpful as an open source educational tool. If you translate it to your country language, please consider yourself to be a co-author.

With best regards Dr. Jiri Pazdirek Consultant Rehabilitation Medicine jiripazdirek@yahoo.co.uk

The manual was revised by Professor Nathan D. Zasler, MD, FAAPM&R, FAADEP, DAAPM, chairperson of International Brain Injury Association and co-editor of Brain Injury Medicine: Principles and Practice.

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PRACTICE - BASED TBI REHABILITATION MANUAL FOR HEALTHCARE SYSTEMS WITH LIMITED RESOURCES ___________________________________________________________________________ CONTENTS: INTRODUCTION: CHAPTER ONE. REHABILITATION MANAGEMENT DURING ACUTE STAGE ON THE ICU.

Chapter 1. A/ Statistically predicting the outcome immediately after the injury.

Chapter 1. B/ Patient on the ICU Chapter 1. B/ 1. Prevention of ankle plantar flexion contractures Chapter 1. B/ 2. Prevention of knee and hips contractures Chapter 1. B/ 3. Prevention of upper limbs contractures CHAPTER TWO. REHABILITATION MANAGEMENT OF LONG LASTING COMA, UNRESPONSIVE WAKEFULNESS, AND MINIMALLY CONSCIOUS PATIENTS.

Chapter 2. A/ Coma Arousal Therapy Chapter 2. B/ Rehabilitation management of Vegetative and Minimally conscious state CHAPTER THREE. REHABILITATION MANAGEMENT OF PATIENTS EMERGING FROM COMA

Chapter 3. A/ Clinical course of recovery from coma Chapter 3. B/ Agitation and confusion Chapter 3. C/ Management of confusion and agitation CHAPTER FOUR. EARLY STAGE REHABILITATION MANAGEMENT OF PATIENTS ON THE STEP-DOWN UNIT OF THE ACUTE CARE OR IN A REHABILITATION HOSPITAL

Chapter 4. A/ Admission criteria for TBI rehabilitation program Chapter 4. B/ Evaluation of the patient Chapter 4. C/ Admission report and Discharge summary Chapter 4. D/ Planning of the rehabilitation program Chapter 4. E/ Most important functions to recover for TBI patients CHAPTER FIVE. NEURO PHILOSOPHY – CORE STRATEGY OF TBI REHABILITATION THERAPY

CHAPTER SIX. GENERAL DESCRIPTION OF POSSIBLE CLINICAL SCENARIOS IN TBI REHABILITATION, WITH LONG TERM THERAPY STRATEGY AND PLAN.

Chapter 6. A/ Patients included into rehabilitation program early after the injury.

Chapter 6. A/ 1. Time from the injury 3-12 months / Severe impairment Chapter 6. A/ 2. Time from the injury 3-12 months / Moderate impairment Chapter 6. A/ 3. Time from the injury 3-12 months / Light impairment Chapter 6. B/ Patients included into rehabilitation program later after the injury Chapter 6. B/ 1. Time from the injury 12-24 months/ Severe impairment Chapter 6. B/ 2. Time from the injury 12-24 months/ Moderate impairment Chapter 6. B/ 3. Time from the injury 12-24 months/ Light impairment

4 Chapter 6. C/ Patients included into rehabilitation program too long after the injury.

Chapter 6. C/ 1. Time from the injury, over 24 months / Severe impairment Chapter 6. C/ 2. Time from the injury, over 24 months / Moderate impairment Chapter 6. C/ 3. Time from the injury, over 24 months / Light impairment CHAPTER SEVEN. BASIC RECOMMENDATIONS FOR REHABILITATION THERAPY DURING THE FIRST YEAR

Chapter 7. A/ Spasticity and contractures management.

Chapter 7. B/. Static standing – Verticalization Chapter 7. C/. Gait training.

Chapter 7. D/. Global movement patterns and coordination training CHAPTER EIGTH. ECONOMY AND FEASIBILITY OF THE LONG TERM REHABILITATION PLAN

CHAPTER NINE. GENERAL DESCRIPTION OF COMMON CLINICAL TYPES OF TBI IMPAIRMENT, WITH GOALS, AND BASIC THERAPY RECOMMENDATIONS

Chapter 9. A0/ Patient with Severe spastic tetraplegia and NG/PEG tube for feeding Chapter 9. A1/ Patient with Severe spastic tetraplegia on oral feeding Chapter 9. A2/ Patient with Severe spastic tetra or triplegia on both LE and one UE. Chapter 9. B/ Patient with spastic tetraplegia severe on one side and moderate on the other Chapter 9. C/ Patient with moderate symmetrical spastic tetraplegia Chapter 9. D/ Patient with spastic tetraparesis moderate on one side and light on the other Chapter 9. E/ Quadriparesis with predominant impairment of lower extremities Chapter 9. F/ Quadriparesis with predominant impairment of upper extremities Chapter 9. G/ Spastic or flaccid hemiparesis, severe on one side Chapter 9. H/ Spastic hemiparesis light to moderate Chapter 9. I/ Patient with symmetric flaccid quadriparesis Chapter 9. J/ Predominantly Ataxia and balance impairment Chapter 9. K/ Predominantly cognitive impairment with independent mobility CHAPTER TEN - VARIA Chapter 10. A/ Swallowing Chapter 10. B/ Communication Chapter 10. C/ Bowel and bladder control retraining by timed toileting Chapter 10. D/ Seizures prevention and management, Posttraumatic hydrocephalus, Parkinsonism, Depression, Apathy, and hormonal disorders Chapter 10. E/ Cortical blindness Chapter 10. F/ Surgery of contractures and Heterotopic Ossifications Chapter 10. G/ Botox injections Chapter 10. H/ Home exercises program and caregiver education Chapter 10. I/ Exceptions CONCLUSION: Telling the truth (Or at least some reasonable approximation of it).

REFERENCES

5 INTRODUCTION: Dear readers, If by chance you are working in a Healthcare system with limited resources (and who is not?) we will share with you some ideas based upon our clinical experience with Traumatic brain injury rehabilitation. We will focus on treatments that are basic, essential and of major clinical importance, in order to make this manual short and user-friendly. For more details and fine tuning, you will find relevant Internet links.

Our manual is intended for students, beginners in the field and non-native English speakers.

We wanted to keep things as short and simple as possible, adding a lot of pictures. We also tried to be realistic about available therapy times and equipment, considering world average GDP/PPP per capita to be around 12,000 USD. Healthcare resources are related to this number and are usually used first by acute and lifesaving care.

Many heavily injured people who were previously lost are now surviving thanks to newly developed lifesaving medicine capacities. Unfortunately, many of them remain with certain severe functional impairment. Rehabilitation therapy is expected to make these saved lives easier to live and decrease the burden of care for communities and relatives. But it must be really effective, medically as well as economically.

The number of severe brain injuries in developed countries is approximately 12 per 100,000 people. The number of moderate brain injuries is approximately 15 per 100,000. The mortality rate for severe TBI is 30-50%. The mortality rate for moderate TBI is 10 – 15%. It is estimated that more than one million people around the world survive moderate to severe traumatic brain injury yearly, with various levels of resulting functional impairment.

Despite an insufficient number of rigorous scientific studies in the field, as we can see on: Physiotherapy after TBI systematic review 01, it is becoming increasingly clear, based on growing clinical experience and reports that most of these patients will benefit from effective active rehabilitation therapy. Especially if given during the first years after the injury, it can reduce levels of impairment and costs of follow-up, sometimes lifelong medical and nursing care.

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Considering that our patients are often young and living with impairment for the next 30-50 years, these savings will repay generously for the initial investment in effective rehabilitation therapy.

We know for sure that rehabilitation therapy works, if done properly. But we also know that precious therapy resources or potentials for improvement are sometimes wasted, delivered too late, inappropriately, or in insufficient quantities. No one is surprised if medicaments have no effect when given in the wrong indication, in lower than necessary dose, late, or for a shorter time than needed. Therefore, no one should be surprised if rehabilitation therapy has no effect either, if given inappropriately, in lower than necessary intensity, late, and for shorter than needed periods.

The main question is how to efficiently and cost effectively provide rehabilitation for TBI patients on a large scale that satisfies everyone’s needs. We don’t know the answer yet. No one does. There are simply too many variables at the beginning and during the therapy programs.

Maybe this tricky problem can be simplified if we begin from the end. It sounds strange, but actually, at the end there is only one variable we are all looking for – the OUTCOME of our efforts. But when does the end begin?

The answer will depend on your healthcare profession, and there are significant differences between acute-care medicine and rehabilitation medicine points of view. We will try to approach these issues from different perspectives, based on predictable therapy outcomes for core rehabilitation professionals; physiotherapists, occupational therapists and speechlanguage pathologists. Later, they will be joined by psychological and community integration related vocational and social workers.

Much will depend on the availability of rehabilitation therapy resources during various stages of patient management in hospitals and nursing care facilities during their previous clinical experience. If the patient received intensive, regular and sufficient rehabilitation therapy from the beginning, then the overall period of rehabilitation can be shortened. But if they were not able to participate, or did not get appropriate rehabilitation interventions during their first six to twelve months, then they will need to be treated over a longer overall period.

Much also depends on the severity of the injury and the age of the patient. This circumstance is not always simple and linear. With very severe injury and impairment, more rehabilitation effort may not produce better results. You may reach a therapy plateau sooner, but then see no further significant changes, even with long-term intensive treatment. The same can be said concerning the age of the patient. Over 40 years of age, recovery becomes slower and tends to plateau sooner than under 20 years of age, with many shades of grey in between.

Depending upon funding resources for rehabilitation, Public Healthcare Insurance fully covers rehabilitation treatment only in a few, rich, mostly European countries that have abundant treatment resources and strong social welfare traditions. In other places, private insurance, government, or charity funding covers part of expenses, often with increasing financial participation by the patient and his family. We must be very careful not to waste money and resources on interventions without clearly defined, measurable and achievable benefits.

7 Active rehabilitation therapy, nursing and social care are often mixed in one hospital setting in countries with less developed healthcare and social care infrastructure. At the same time, many people with potential for functional improvement are not getting timely active rehabilitation interventions because of the limited capacity of such rehabilitation hospitals.

Chronic TBI with no great potential for further improvement is actually not a worse scenario in our rehabilitation practice. We have patients who are deteriorating due to MS, ALS, RA, tumors etc. where we are trying to slow down their decline and where rehabilitation meets the nursing and palliative care. All are often sharing our limited therapy resources. So whom you will choose to get it? The one evoking more compassion - or the one having a chance for measurable physical improvement? People often tend to make an emotional choice and this unfortunately, leads to ineffective healthcare. Striking a right balance is an art.

We are advocating to have intensive and active REHABILITATION THERAPY on the beginning and then continuing REHABILITATION CARE with maintenance interventions, available for everybody in a reasonable, technically possible and affordable way, appropriate for every country cultural social and healthcare context, not bringing additional suffering and discomfort to the patient without a clear gain. For that, the transition between active rehabilitation time and continuing long term maintenance needs to be defined.

We are trying to write this manual for Healthcare systems with limited resources and staffing.

That supposes patients may not have received much rehabilitation therapy during their first months after injury. It also supposes that patients with mild or moderate impairments have already been discharged home and are doing their best in community settings. This means our patients will mostly have moderate to severe impairment and often experienced prolonged previous hospital stays. Some are coming from their homes many months from hospital discharge and were receiving none, very limited or non-systematic rehabilitation care.

That is the most significant difference, compared with a group of 2,130 US patients from 2008- 2011 studied by the team of Susan D. Horn, Ph.D. TBI Rehabilitation Comparative Effectiveness 02 In this group, the average days from injury to rehabilitation admission were 29.3Âą34.3, and their length of stay was 26.5Âą19.9 days. That means these patients were receiving rehabilitation interventions no later than two months from the injury. They were discharged either at home to continue with rehabilitation as an outpatient or, if unable to go home, to long-term nursing care or rehabilitation facilities. The medical complications during rehabilitation were solved by transferring the patient back to acute care hospitals.

In environments with less developed healthcare infrastructures and limited rehabilitation and social care capacities, we will face a different situation and our long term treatment strategy must be adjusted to that.

To accommodate Rehabilitation management planning for our patients, we define the ACUTE stage, as the time interval before the patient, if left untreated, develops fixed secondary physical complications such as contractures, muscle atrophy, fixed faulty movement or behavior patterns etc. from his impairment. We can divide that between an early acute stage (up to three months from the injury, with possibly ongoing medical management) and acute stage rehabilitation ending within one year after the initial injury.

The SUBACUTE stage is defined as the time interval when secondary complications of the impairment are at least partially reversible. For our type of patients and healthcare environment, we recommend recognizing the end of this stage as the end of the second year

8 after injury. This is because many of our patients, who received no rehabilitation during the first year, still had significant rehabilitation potential that went unrecognized in the past.

The CHRONIC stage is defined as having a minimal probability of significantly changing the patient’s physical condition with therapy. Yet patient function and quality of life can still be improved with appropriate equipment and alternative strategies. For our purposes, this will begin after 2 years and end 5 years after the injury. Here the rehabilitation care must be combined with social care and community support. And even after that, the patient should be followed and given our assistance if his function deteriorates or his medical condition changes. Aging with impairment and with special needs is a lifelong challenge.

One of the most significant aspects of the scientific approach is its predictive power. Based on evidence-based predictions we can more reasonably assign our always limited therapeutic resources. Based on our practice and experience with various grades of functional impairments, we will attempt to make at least general predictions concerning possible TBI patient functional outcomes in time estimates from 2 up to 5 years from the injury. We also will try to define the circumstances when no additional functional improvement can reasonably be expected and our strategy should change from active treatment to compensation for functions that are permanently lost and for social support. This might be useful in the overall planning of interventions.

We should intervene with total effort whenever we expect to regain any function prevent further functional loss, or on some level improve the wellbeing of the patient and his family.

We should avoid wasting our time and resources where no positive change is forthcoming.

And we should know the difference between these circumstances for every individual patient.

This follows the well-known Serenity prayer: God, give me strength to change the things which can be changed, the grace to accept with serenity the things that cannot be changed and the wisdom to distinguish the one from the other

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9 CHAPTER ONE. REHABILITATION MANAGEMENT DURING ACUTE STAGES ON THE ICU. A) Statistically Predicting Outcomes Immediately after Injury.

With properly detailed initial evaluations and good neuro-imaging, we are now statistically able during the first 8 hours after an injury to predict the outcome expected six months later regarding TBI survival and level of disability.

Examples of available calculators: MRC CRASH Head injury prognosis 03 IMPACT Predicting 6 month outcome 04 The MRC CRASH instrument defines outcomes at six months post injury, as: Favorable outcome: 1. Good recovery: able to return to work or school, with possibly some minor residual deficits 2. Moderate disability: able to live independently; unable to return to work or school Unfavorable outcome: 3. Severe disability: able to follow commands/unable to live independently 4. Persistent vegetative state: unable to interact with environment; unresponsive 5. Dead The nature of brain injury is extremely heterogeneous. No two injuries are exactly the same.

The primary injury will be modified by secondary insults and patient-related factors; mainly age, premorbid medical conditions, physiological reserves, timing, quality and availability of medical care. The length of coma and recovery time will vary extremely from minutes to years.

In this work, we exclude 80% of the lucky ones, exhibiting only Mild TBI. Cases with initial GCS 13–15, posttraumatic amnesia of less than 1 day and length of coma from 0–30 minutes are called concussion Concussion 05

10 Some of our colleagues in the field of sports medicine will be involved with the physiotherapy of related cervical spine soft tissue injury and post-concussion syndrome. Post-concussion syndrome 06 We ourselves will remain in the hospital with the less fortunate patients who had an initial Glasgow Coma Scale between 3 to 12 and coma lasting for more than 24 hours:

B) Patient on the ICU Basically, we can predict the percentage of unfavorable outcomes, but we cannot predict a personal result for a particular patient. So the only practical choice we have is to treat all of them, even though some of them will not survive. And we must start directly on the ICU, once the patient is stabilized. We cannot predict how long the particular patient will remain in a coma. Thus early interventions should begin with all, no later than two weeks after the injury so long as the patient is medically stable. Not only does this prevent, or alleviate complications of immobility, but also helps in recovery and healing of the brain.

Despite insufficient rigorous scientific data regarding the rehabilitation of TBI patients on the ICU Effectiveness of PT and OT after TBI on the ICU 07, there are possibilities for how a rehabilitation professional may contribute. Limitations should nevertheless be respected, when coming from a patient’s other injuries, comorbidities and medical complications.

During the early acute stage, immediately after admission, there is not much space for PT, OT or SLP work. They will become an important part of overall management once the patient is stabilized regarding vital functions, all surgeries are complete and sedation is tapered off.

Especially for longer lasting coma and when initial flaccidity is replaced by the development of spasticity, some of our interventions will become essential.

Our main goal at this stage will be: 1. PREVENTING COMPLICATIONS OF IMMOBILITY 2. SENSORY AND PROPRIOCEPTIVE STIMULATION Interventions at this stage cannot exactly be called rehabilitation; they belong to the category of passive physiotherapy procedures. Preventing the complications of immobility in a more narrow sense will mainly mean prevention of contractures and related muscle atrophy.

11 Initially, the patient is either in a coma or sedated with low muscle tone and is not developing contractures. Later on, he may regain some muscle strength and develop spasticity with knee or elbow contractures, while still being nonresponsive or even ventilated.

The main limiting factor for our interventions on the ICU might be mechanical ventilation of the patient, often with a tracheostomy. But even in this situation, physiotherapy is feasible and beneficial according to recent studies.

PT and OT feasibility on ventilation 08 Early rehabilitation on ventilation 09 B) 1. Prevention of Plantar Flexion Contractures of Ankles This should begin immediately after stabilization of the patient’s vital functions. With the contractures developed, rehabilitation of the patient will later face situations that are difficult to manage and the patient will suffer unnecessarily.

Plantar flexion contractures present a major obstacle for rehabilitation of static standing and, later on, walking. Together with knee contractures, they are one of the most important problems we face when a patient needs to regain upright posture and mobility.

The importance of the prevention of its development cannot be overestimated, because it is a key factor deciding upon the most important functional outcome, which is walking.

Prevention is simple and cheap. Treatment is long, difficult and expensive. Prevention of plantar flexion contractures 10

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a) Make sure the hospital blanket does not press the patients feet into plantar flexion b) Use a box or pillow to support both legs and blanket c) Use resting splints to prevent ankle contractures. Later use AFOs with light sports shoes – we hope the patient will also use them for walking one day.

d) In the later stage of the ICU stay, with coma lasting more than four weeks, if the patient is not mechanically ventilated, keep him sitting or semi sitting, with legs touching some support, or the ground. This is contracture prevention and proprioceptive and postural stimulation at the same time. If the head is unstable, a Philadelphia or soft collar may be used for support. e) Start early verticalization with a tilt-table, if tolerated, and the patient breathes spontaneously and has stable vital signs during tilting.

13 Do not waste time with manual passive stretching – it cannot be done long enough to achieve a lasting effect. Save your energy, as other patients are waiting.

B) 2. Prevention of Knee and Hips Contractures The patient may develop contractures in prolonged coma when initial flaccidity is replaced by developing flexion spasticity.

If developed – these can be even worse than plantar flexion contractures of ankles, and difficult, or impossible to manage later, especially for knee contractures. To prevent it:

a) Use a knee brace or knee immobilizer but gently, not compromising blood flow or skin integrity and not causing any painful or excessive proprioceptive stimulation.

14 b) Consider prone positioning, especially during a later stage of the ICU care, when the patient is medically stable but remains in a prolonged coma.

Prone positioning 11 c) Start early and gradual verticalization, with a tilt table if tolerated and the patient is breathing spontaneously and has stable vital signs during tilting. In this case, you will have a synergy effect for ankle contracture prevention as well and for UE contracture prevention or release by the force of gravity. Physiotherapy in critically ill patients 12 B) 3. Prevention of Upper Limbs Contractures These are more difficult to prevent than those on lower limbs and once developed might be permanent:

a) Use elbow braces, splints or arm immobilizers

15 b) Use hand positioning splints or braces

Contracture prevention with splinting should be done with precautions regarding circulation and pressure-sores development. At the same time, it should be applied almost permanently for comatose patients, in order to achieve any results. The main bulk of this labor will be fall upon the nursing staff or family, according to your instructions and always with qualified supervision.

Observe the patient for early development of Heterotopic ossifications – the joints where this occurs will become warm and swollen. Early mobilization is actually supposed to decrease the risk of development of this unfortunate complication. Medical management of this condition with anti-inflammatory and other medication is in the competence of the treating physician as well as the decision to continue or limit physiotherapy interventions in such cases. Heterotopic ossification after central nervous system trauma 13

16 Regarding SENSORY AND PROPRIOCEPTIVE STIMULATION - sitting or at least semisitting, prone positioning and early gradual verticalization with a tilt table are the same treatment strategy as for contractures prevention. You can use a Philadelphia Collar for head support. Gravity will help to release flexion contractures of elbows if you allow the upper limbs to hang free.

Medical management of developing spasticity with drugs as Baclofen, Dantrolene, and other medication is in the competence of the treating physician and related to other drugs used. For example, Baclofen up to 20 mg tid., combined with Dantrolene up to 50 mg tid., are considered to usually be a safe effective dose.

CHAPTER TWO. REHABILITATION MANAGEMENT OF LONG LASTING COMA, UNRESPONSIVE WAKEFULNESS, AND MINIMALLY CONSCIOUS PATIENTS. A) Coma Arousal Therapy Coma is defined as a state of deep and often prolonged unconsciousness. In case that the patient is in a coma longer, for severe TBI, Coma arousal therapy – or coma stimulation can be considered as an option, despite difficulties to verify its effectiveness with rigorous scientific study. Effects of the Sensory Stimulation on Recovery in Unconscious Patients With TBI 14 When and if ever we begin this technique will depend on other medical conditions of the patient, as well as our technical and staffing situations. Being realistic about it – we can at least educate the patients family on how it is done. Contracture prevention and proprioceptive stimulation will be the same as in the acute stage.

Some of our patients (example on a photo below) were ventilated in a coma for three months, then vegetative for another six months and then regained consciousness. Later, they regained good cognition, and even ability to write, but remained heavily impaired due to severe contractures resulting from long lasting rehabilitation neglect.

Lifesaving ICU care itself is very expensive. A small additional investment to improve its rehabilitation staffing can improve medical outcomes and save people from lifelong suffering.

This will have great cost effectiveness by lowering later expenses for care, especially in the younger patient with a long life expectancy.

B) Rehabilitation Management of Vegetative and Minimally conscious State Most comas end with eye-opening and regaining of consciousness. However around 10% of patients who open their eyes fail to regain consciousness and remain in a vegetative state.

17 The unresponsive wakefulness (previously called vegetative state) state is a chronic condition that preserves the ability to maintain blood pressure, respiration, and cardiac function, but without cognitive function.

A minimally conscious (responsive) state, unlike a vegetative state, is characterized by some evidence of awareness of self and/or the environment, and patients tend to improve. For details see: Emergence from the minimally conscious state 15 Further sub-categorization to MCS+ for higher-level responses as command following, and MCS- lower level response, as appropriately smiling or crying to emotional stimuli, is possible and seems to be important for patient prognosis. Traditionally, a vegetative state that lasts longer than 1 month is considered to be a persistent vegetative state. Recovery from a vegetative state is unlikely after 3-6 months if brain damage is non-traumatic and after 12 months, if brain damage is traumatic.

Rehabilitation management of the vegetative or minimally responsive patient during the first year after their injury should be persistent. We recommend daily interventions, with contractures prevention and sensory and proprioceptive stimulation. Keeping the patient in a sitting position during the day, splinting, prone positioning and verticalization with a tilt table should be possible in the acute care hospital.

For long-term nursing and home health care programs, it might be possible with additional staffing and if the family will participate.

You cannot predict who will wake up in the end. Misdiagnosis of persistent vegetative state is not uncommon and some patients can be in an undiagnosed minimally conscious state and still be aware of their condition and surroundings. Surprising cases of awakening and even some functional recovery have been occasionally reported. Sometimes this may be caused by an unusually positive response to medication such as Benzodiazepines, Zolpidem, Midazolam, Amantadine or deep brain stimulation.

Even though it is impossible to discuss all possible scenarios and combinations of medicolegal-cultural-technical-financial factors in the management of the vegetative and minimally responsive patients in our rapidly changing world, they all have something in common.

18 Long-term survivors in these conditions tend to be young, and their family members tend to be both desperate and irrational. The care you give the patient is, at the same time, a kind of support, psychotherapy and family therapy for relatives who are facing one of the most difficult life challenges you can ever imagine. Assuring them, that the best possible is being done, and that no hope is neglected, in the case of a miracle they hope will happen, is vitally important.

This should be done in a way that is reasonable, rational, affordable and not likely to bring any additional suffering to the patient. End of care in clearly verified cases and allowing a natural course to take place may be an option. That choice depends upon specific cultural, ethical and legal situations, but in that case it should be the end of all care and not merely physiotherapy.

Management of the patient after one year and during years to follow should be more gentle and focused mainly on his comfort and the prevention of complications from immobility.

The development of contractures cannot be fully prevented and contractures already developed are unlikely to improve. We must avoid any forceful splinting and stretching, causing soft tissue damage or painful proprioception because this will just increase overall spasticity. We advocate continuing with the positioning of the patient in the sitting position, prone positioning, and verticalization on the tilt table. This can be done by any kind, willing and trained person under the occasional supervision of a rehabilitation professional. Patients with severe brain injury tilt table arousal 16 ___________________________________________________________________________

CHAPTER THREE. REHABILITATION MANAGEMENT OF PATIENTS EMERGING FROM COMA A) Clinical Course of Recovery from Coma The clinical course of regaining of consciousness can vary widely, depending on the severity of the TBI, age and physical constitution of the patient, as well as length of coma and a variety of associated conditions related to patient’s premorbid character and cultural background. Imagine the difference between a 100 kg male soccer fan with habitual heavy drinking who suffered his injury in a pub brawl and a fragile 40 kg vegetarian female ballet dancer falling on her head during dance training.

Someone who was in coma for three months and remains immobile with aphasia and spastic quadriplegia will be very different from another with a coma for two days who regained the ability to walk during the first week and has only light ataxia – but, on the other hand, remains confused, agitated and attempts to escape from the hospital. It is difficult, if not impossible to cover all real-life scenarios we can meet in clinical practice.

One of the well-known attempts to define coma recovery stages is the Rancho Los Amigos scale RLA scale short 17 and RLA revised full 18 in in the extended version. How many

19 patients actually follow this sequential timeline is not yet well documented and the timing of different stages is difficult to predict. Individuals progress at different rates and may plateau at any stage of recovery.

B) Agitation and Confusion For the description and evaluation of this situation, you can use the Agitated behavior scale scale ABS 19 and Confusion Assessment Protocol CAP 20 The main problem for rehabilitation management during this stage is the agitation and confusion of the patient. This can pose serious challenges, especially if the patient is not significantly impaired in mobility. How many patients will become agitated during their recovery is not completely clear, as there is a large variation in reports.

As illustrated in Table 2.1 (page 17) Agitation after traumatic brain injury 21 11 to 96% of TBI patients experience agitation during the acute stage of recovery and 31 to 70% during the chronic stage. The onset in the research varies from 24 hours after emerging from a coma (acute) to seven years after the injury (chronic).

The same source defines Agitation after TBI as one or more repetitive, non- purposeful, and inappropriate verbal and motor behaviors, which may be provoked by external or internal stimulation and occur during the confused state (PTA) that results from cognitive impairment and/or emotional instability after TBI. Furthermore, agitation interrupts a patient’s care, therapy, and/or safety. The behavior shows itself as some combination of restlessness, aggression, disinhibition, and akathisia.

Based on the definition of Aggression 22 that the Aggression is overt, often harmful social interaction with the intention of inflicting damage or other unpleasantness upon another individual, it is possible to argue, that confused and agitated patients after TBI mostly do not have any clear intention at all.

So we strongly recommend not using the word aggressive for TBI patients during a confused stage, and only under severe restrictions even later. Defensive will be a more accurate, appropriate and patient friendly description.

Patients are rarely aggressive – but being confused, they might easily assume that we are…

If someone enters your personal space, causes you pain or discomfort and tries to mobilize you when you do not really want that – you tend to protect yourself against it.

We have experience with around 800 newly admitted, mostly sub-acute (up to six months post-TBI) male patients in Saudi Arabia with severe functional impairment. The prevalence of agitated behavior in 2007-2017 did not surpass 20%. Severe and difficult to manage cases leading to exclusion from rehabilitation were not common at all, maybe around 2%.

20 C) Management of Confusion and Agitation: Management will always depend on multiple factors related to the patient’s constitution – the injury – duration of the agitated stage – and the environment.

In the first line of management, we always try to calm the patient by not irritating him with unnecessary interventions and minimizing unfamiliar or unexpected situations. Rehabilitation is not urgent medicine and there is no harm if you leave the patient for a couple of days without any exercises during his acute, recovery agitated stage. Nursing interventions have priority here and might be the maximum a patient can tolerate. Kind interactions, promoting a feeling of safety and providing gentle emotional support can be beneficial. Empathy is needed above all else.

If the level of agitation is so high that the patient is in danger of suffering self-harm by falling from the bed, leaving his room or if it makes nursing care impossible, other measures might be necessary. There are three management options in the second line: Medication, Physical restraints and combinations of the two.

Restraining the patient is against the basic philosophy of rehabilitation. We try to avoid it as much as possible. If no other option is available, restraint can be accepted for a short time during the acute stage. What is a short time in rehabilitation? Let’s say 3 days if there is a clear improvement on the third day. At the same time, it might be acceptable to use sedatives to calm the patient, even though he will not be able to participate in any exercises.

Management of behavioral problems during acute TBI rehabilitation 23 For some patients the confused and agitated stage can last longer, possibly weeks or even months, so restraint for such a long period is clearly not an option. Keeping them sedated is not an option either. Thus, neuroleptic medication, along with environmental adaptations, remains our only choice. Preferably these should be supervised by a psychiatrist or physician with some experience in this area, because repeated adjustment of dosage and medication changes might be needed. As per our experience, in many cases it was the neuroleptic medication that enabled rehabilitation interventions that would otherwise have been impossible or, at the very least made the rehabilitation program smoother.

Dosage of this medication should be as low as possible and the timing as short as necessary.

Patients often improve quickly enough with exercises, and these medications can be tapered off within a few weeks.

Finding the correct balance between safety and the necessary mobilization of a confused patient often depends on our staffing and/or the participation of relatives. Sometimes we can avoid restraint and tolerate a confused patient who is unable to walk but still mobile on the ground floor if supervised permanently with mattresses and carpets.

On rehabilitation, we really do not like to restrain the only part of the body with active mobility, e.g. one upper extremity. And if a confused patient is tearing his diapers or pulling tubes, it can sometimes be possible to put only a mitten on his hands and avoid restraint, leaving the upper extremities free, at least for shoulder and elbow movements.

21

Occasionally you must accept confused and agitated patients intolerant of any rehabilitation intervention and receiving only nursing care and medication while waiting for natural recovery and healing. Time heals many wounds and cannot always be replaced by medication, interventions, and technology. ___________________________________________________________________________

CHAPTER FOUR. EARLY STAGE REHABILITATION MANAGEMENT OF PATIENTS ON THE STEPDOWN UNIT OF THE ACUTE CARE OR IN A REHABILITATION HOSPITAL A) Admission criteria for TBI rehabilitation programs Optimally the patient will be stable with vital signs within normal limits, on room air breathing without tracheostomy tube, calm and able to follow at least simple commands. He should be able to participate in the rehabilitation program for one to three hours daily, with physical exercise intensity of at least MET 1,5 - 2 (Table top activities - walking with support - one and a half to double of the resting Oxygen consumption). For the concept of metabolic equivalence, see more on Metabolic equivalent 24 Patients with lower physical exercise tolerances can still be accepted under rehabilitation management if there is a reasonable expectation that they will gradually improve with gentle physical intervention. Even patients with chronically low tolerance to exercise, with no expectation of change, can benefit from rehabilitation programs if there is a reasonable chance to recover some useful function for the patient – as self-feeding, communication or electric wheelchair control.

Otherwise, the focus will be on nursing care. In that case, rehabilitation will participate on maintenance exercises, equipment prescription, environmental adjustment and education of caregivers in a short-term, 1-2 week program.

The limited resources of rehabilitation should not be used only for nursing care. An often abused excuse for admitting inappropriate patients into rehabilitation programs is to

22 give them a chance. Let’s be humble and clear about this. We do not have the power to give or take away any chances from patients.

We can either correctly recognize the patient with a chance for improvement – or we can make an error of judgment and then unnecessarily torture someone with no chance, with uncomfortable exercises and expensive interventions. Nursing and palliative care are important and honorable parts of the healthcare business as well and rehabilitation should not be confused with them.

Sometimes difficult and sensitive decisions about patient prognosis and further long-term rehabilitation management planning should be done with an initial rehabilitation team conference. A physiatrist as a senior and experienced rehabilitation professional might be a useful team player from this stage onwards.

B) Evaluation of the Patient This is the most important initial activity of the interdisciplinary team. Evaluations should be done during the first week after patient admissions under rehabilitation programs and must be standardized with the use of known and accepted instruments. It is possible to choose the best fit for a particular case mix from Rehabmeasures 25 At the initial stage we recommend using more general tests that will not take longer than 1 hour and will give a clear description of the major impairment and most important problems. The widely accepted and well-known FIM instrument is a good tool for TBI case evaluation FIM 26 additionally, it may be useful to describe the patient condition in a short text, with a focus on impaired functions as a part of the assessment.

EXAMPLES: FUNCTIONAL STATUS: Patient is oriented, cooperative and speech is fluent in simple sentences. Can sit up with minimal assistance, cannot stand. There is spastic quadriparesis with flexion contracture of the left LE. Strength is around 3+ for the right UE with spasticity Ashworth 2-3 and flexion contracture of the elbow at 45 degrees, right LE is with strength 4and spasticity Ashworth 2. Left UE is with strength 4- and spasticity Ashworth 2, left LE is with strength 3 with flexion contracture of the hip in 15 degrees, knee in 45 degrees and plantar flexion contracture of the ankle in 15 degrees. The patient is incontinent, on oral feeding with no choking.

FUNCTIONAL STATUS: Patient is alert and can follow simple commands. Is aphasic and aphonic. Has spastic triplegia with only left UE active mobility preserved. Cannot sit up, static sitting is poor but can be seated in a wheelchair. Right UE and LE is with strength 1-2 and spasticity Ashworth 3-4. Left LE with strength around 3 and spasticity Ashworth 3 with severe flexion contracture of the knee in maximal flexion and hip in 80 degrees. Any attempt with a release is with pain and patient resistance. Patient is incontinent with NG tube for feeding.

FUNCTIONAL STATUS: Patient is alert and can follow simple commands. No speech production, but can repeat words with a clear voice. Cannot read and write. Able to stand up with moderate assistance, can make few steps with maximum assistance. Has right side hemiparesis with strength of the right UE 1 for the hand and elbow and 2 to 2+ for the

23 shoulder, spasticity is Ashworth 1-2. Right LE is with strength around 3- to 3 with spasticity Ashworth 1. The patient is continent and has no swallowing problems.

FUNCTIONAL STATUS: Patient is oriented and cooperative, speech is fluent, is sitting in a wheelchair, static sitting is stable. Cannot stand up. Has left side hemiparesis. Strength is 4 to 5- on the right side with no apparent spasticity or ataxia. Strength is 0-1 for the left UE and 3- for the left LE with spasticity Ashworth 1-2. Patient is continent and has no swallowing problems.

We also developed a detailed brain injury specialized initial evaluation form that is not part of this book but can be shared by email upon request. This evaluation form can generate the following numerical data for comparison and statistical evaluation: Age - Gender - Length of stay - Number of previous admissions - Region where from - Time from beginning of the disease/impairment - ICD -Modified Rankin Scale - FIM cognitive - FIM motoric - FIM total - Distance walked - Distance traveled in a wheelchair – Mini-Mental status score - Clinical Outcome Variables scale - 2 Minute walk test - Berg Balance scale - Brief ICF Core Set for Traumatic Brain Injury score.

If you find it too detailed and comprehensive for your needs, it is possible to shorten or choose those parts relevant for your specific program, depending on time and resources available. Some parts will be more, some less important, but there are probably some common and most important sets of data we all must know. It is AGE, TIME FROM THE INJURY and initial FIM. Collecting and transferring Information takes time and working-time is money. Our resources are limited, so let’s be economical with all this paperwork, mouse clicking or tablet screen touches. Collecting and recording unreliable data is a waste of time. Considering their brain injury, our patients are only rarely a reliable source of any medical history. We need to know who will provide us with reliable information on the side of the transferring unit or family and what is reasonable to ask? Will it be reliable? Do they understand what we are asking for?

What information can be easily collected and recorded and will we face any language or cultural barriers?

In our clinical practice, we have the same major problems of communication as anyone else.

Not enough information, too much data or worse; not enough relevant information and too much irrelevant noise consuming our time and attention.

Attention is expensive, not only in the advertising business. We need to determine what’s wrong with our patient at first sight and our evaluation should also transfer this information clearly at the first glance to anyone who will review it later.

A first sight evaluation should give us a mental picture of overall patient condition, so we can remember them as a case similar to something we have already seen or treated. Or we are able to match it with available literature resources. Finally, we will be able to make a mental picture of the patient’s possible future; called a prognosis. Based on that, we will construct our rehabilitation plan for how to achieve this future, depending upon our resources, time available for treatment, equipment, and staff skills.

24 So how does the patient look and how to describe his condition briefly but clearly?

For the first sight we recommend having a one page evaluation like the following: You are free to add as many details as you want, later if necessary‌.

25 TBI REHABILITATION PROGRAM INITIAL EVALUATION: Date: ………...………....……

Patient name/MRN.........................................................................................Age......................

Date of TBI onset: ....................................Patient is living in: ..................................................

Initial GCS…….….. Length of coma……...…..Length of NG/PEG feeding…………(Weeks) Neurosurgical intervention: yes Other injuries suffered:

yes

no

Other Surgery: yes

no

Seizures yes

no

no

Other diseases …………………………………………………….............................................

Current medication used…………………………….…………………………………..………

Where is he coming from:

Home - Hospital - Long term care - Others

Basic functional status:

Conscious: yes

Pressure sores:

yes

no

NG tube/PEG:

yes

no

no

Unconscious GCS.............................

Tube - Still open – closed – none

Tracheostomy:

Incontinent

-

Continent

Oriented - Disoriented - Calm - Agitated - Cooperative - Not cooperative - Defensive Oral feeding:

yes

Speech: None – Single words – Short sentences – Severe

no

dysarthria – Light dysarthria – Almost normal - Normal Follows simple commands:

yes

no

Follows two steps commands: yes

Can count fingers from 2m distance: yes Bedridden and unable to sit

-

no

no

Able to sit with help

-

Able to sit without help

Able to stand with 2 people - with 1 person - with frame or walker - without help Able to walk with 2 people - with 1 person - with frame or walker - without help Is ambulatory on a wheelchair - yes - no - with help - independently Upper extremities impaired

- left

-

right

-

both

-

none

Lower extremities impaired

- left

-

right

-

both

-

none

no

Can drink a glass of water:

Able to feed himself with spoon:

yes

yes

Contractures/ Het. Ossifications of - left UE - right UE - left LE - right LE - none

no

26 Now we have a clear and basic picture concerning most important physical factors influencing the patient’s future. TIME passed from the injury, SEVERITY of the impairment and AGE defining regeneration potential.

The second page of evaluation can be used for more details on family and social background as well as for evaluation of patient function in the context of his usual environment: Patients ID No ………………………..

Main Address..……………………….. ………………………………………..

Mobile No:……………………………

Source of income……………………..

Monthly earning………………………

Marital status………………………....

Living with……………………………

Main responsible relative person.………………………………… …………………………………………

Primary caregiver for the patient……… …………………………………………

Social Benefits issued…………….……

Is the patient under social stress……...…...

Is the patient under financial stress……….

Employment type……………………........

Employer phone…………………………...

School type………………………………..

School phone………………………….….

Housing type………………………………

Number of people living in the house.........

Equipment issued………………………… ……………………………………………. …………………………………................

Others…………………………………… ………………………......................

Use abbreviations Y/N or short description

Brief ICF Core Set for Traumatic Brain Injury as below might be sufficient for clinical use Body Functions Impairment b164 Higher-level cognitive functions b152 Emotional functions b130 Energy and drive functions b760 Control of voluntary movement functions b144 Memory functions b280 Sensation of pain b140 Attention functions b110 Consciousness functions s110 Structure of brain Patient level of problems in Activities & Participation d230 Carrying out daily routine d350 Conversation d450 Walking d720 Complex interpersonal interactions

d845 Acquiring, keeping and terminating a job d5 Self care d920 Recreation and leisure d760 Family relationships Level of Patient dependence on Environmental Factors e310 Immediate family e580 Health services, systems and policies e115 Products and technology for personal use in daily living e320 Friends e570 Social security services, systems and policies e120 Products and technology for mobility and transportation

Use three grade classification: None(0) – Moderate(1) – Severe(2) If you want to know how many functions can be affected after TBI according to full version of the ICF 10 TBI set look on ICF TBI comprehensive core set 27 But it does not seem to be very practical for clinical use in our environment with limited resources e.g. time.

27 C) Admission Report and Discharge Summary There are many possible variations and options how to write it. It is common to see extremely lengthy compilations for rehabilitation reports from many professionals involved in the program, which are difficult to review later and incomprehensible to the people who are not specialized professionals. To keep things simple, while still maintaining a balance between medical and functional approaches, we recommend including the following sections.

The first six parts will be filled out upon admission by the physician; the next five sections will be added during hospitalization and upon discharge of the patient by physicians and rehabilitation professionals who participated in the patient’s management.

Unified Admission and Discharge Form: 1. CHIEF COMPLAINT / MAIN ADMISSION DIAGNOSIS 2. HISTORY OF PRESENT ILLNESS 3. PAST MEDICAL AND SURGICAL HISTORY 4. FAMILY AND SOCIAL BACKGROUND HISTORY 5. MEDICATIONS / ALLERGIES 6. PHYSICAL EXAMINATION AND FUNCTIONAL STATUS ON ADMISSION

7. INVESTIGATIONS / CONSULTATIONS / RESULTS 8. REHABILITATION TEAM INPUT / PT, OT, SLP / PSYCHOLOGY / VR, SOCIAL WORKER / EQUIPMENT 9. HOSPITALIZATION COURSE AND FUNCTIONAL STATUS ON DISCHARGE 10.

DISCHARGE DIAGNOSIS

11.

RECOMMENDATIONS/ FOLLOW UP / READMISSION/ MEDICATION

12.

Not to forget the Stamp and signature…………………………………

Administrative work and good documentation is an essential condition for any organized healthcare. It should be done properly and economically, without unnecessary recording of redundant data that are not used later by anyone. Detailed recording and administrative systems from the acute care environment can sometimes be seen in subacute and long term rehabilitation settings and are creating incredibly long obfuscatory patient records, where clinically relevant information is lost in the noise of ritually repeated daily records.

Unlike in acute care medicine, rehabilitation professionals will see their patients returning over and over again with their chronic impairment and facing new life challenges as they age.

Clearly documented previous episodes help to avoid unnecessary repetitions of interventions and procedures which brought no improvement in the past and will save therapy resources.

28 D) Planning of the Rehabilitation Program The case mix of TBI patients coming for rehabilitation is often largely heterogeneous regarding functional impairment and time elapsed since the injury. The clinical course of TBI rehabilitation in time is predictable only in general and with large inter-individual variations regarding the progress of functional recovery.

It is very difficult to achieve simplicity in both the description and therapy planning of such complex tasks as rehabilitation of patients after Traumatic brain injury.

We must: 1. Identify and describe patient problems related to every therapy profession in standardized terminology, understandable to all team members/Evaluation 2. Identify a way, if available, to improve patient conditions or situations/Therapy planning 3. Evaluate if it works/Monitoring and feedback, and define when and how to progress to the next step, once a particular goal has been achieved 4. Coordinate therapy with other team members by sharing information through the Hospital information system/Recording 5. And, finally, make an end-of-therapy evaluation of achieved results and discharge the patient/Discharge planning, with continuing outpatient or home therapy programs and readmissions.

To overcome a problem of the extensive case to case variability, we propose 12 Case mix groups, related to the time passed from the injury in months, correlated with the severity of impairment, based on the FIM score.

1. EARLY STAGE with time from the injury between 3-12 months. a/ Severe impairment initial FIM on the first admission 18-54 b/ Moderate impairment initial FIM on the first admission 55-90 c/ Light impairment initial FIM on the first admission 91-126 2. LATER STAGE with time from the injury 12-24 months. a/ Severe impairment initial FIM on the first admission 18-54 b/ Moderate impairment initial FIM on the first admission 55-90 c/ Light impairment initial FIM on the first admission 91-126 3. CHRONIC STAGE with time from the injury over 24 months. a/ Severe impairment initial FIM on the first admission 18-54 b/ Moderate impairment initial FIM on the first admission 55-90 c/ Light impairment initial FIM on the first admission 91-126 Dividing largely heterogeneous TBI patients into only twelve groups is simple and practical, but obviously not very precise. There will be e.g. many similarities between the patients of the same category from group 1 who is 11 months after the injury and from group 2 who is 13 months from injury and they will share a similar treatment strategy.

On the other hand, there is a significant difference in treatment and prognosis between the patient who has FIM 18 four months after the injury from group 1 and who keeps on having FIM 18 after 25 months from the injury in group 3. The FIM scale is very useful for global descriptions of patient function, but does not give good information about more specific and sometimes treatable clinical problems, such as isolated spastic contracture or wrong movement patterns. Every classification has this problem of artificially dividing a continuum into separate groups. It cannot be done otherwise for the purpose of simplified description. If you want to experience all fifty shades of gray, you need a long term real life clinical practice.

29 The sound clinical judgment of a skilled healthcare professional cannot be replaced by any formal guideline or policy. Different approaches can sometimes lead us to the same result and identical techniques will not work similarly with different patients. Keep your mind open, but always check the result. Too many literary resources describe various processes in great detail and remain unclear about the final goal, as well as results to achieve. We are trying to describe what is possible to achieve in various clinical situations – leaving a free choice of techniques open to your creative approaches.

To overcome the problem of major variability in types and severity of impairment and limited predictability of outcomes, we propose Individual problem-oriented evaluation and Individual rehabilitation plans with continuous feedback and the assignment of therapeutic resources appropriate to changing situations, following: Seven General Rules 1. Evaluate the patient using the standardized evaluation tool 2. Assign appropriate therapeutic interventions for every impairment from the list of well-defined standardized Therapeutic interventions units 3. Re-evaluate the patient every two weeks using the same evaluation tool 4. If improvement is found in your measurements, continue the same therapy 5. If the possibility to train some new function is gained by this improvement, assign new and more demanding therapy intervention from the list of Therapeutic interventions units 6. If no further improvement is found by your measurements, stop the therapy 7. Continue with compensation strategies on the impairment, prescribe appropriate equipment and social adjustments to the handicap We have developed a comprehensive Evaluation form and list of therapeutic interventions and if you will be interested, we can share it with you by an e-mail. We expect you to adjust it or develop your own, more appropriate to your local conditions until we have something globally accepted and standardized.

E) Primary Functions to Recover for TBI Patients.

The World Health Organization (WHO) defines rehabilitation as "a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments." WHO, 2011 is instrumental in enabling people with limitations in function to remain in or return to their home or community, live independently, and participate in education, the labor market and civic life.

Rehabilitation measures are aimed at achieving the following broad outcomes: • Improvement or restoration of function • Compensation for lost function REHABILITATION THERAPY • Prevention of the loss of function • Slowing the rate of loss of function • Maintenance of current function REHABILITATION CARE But the meaning of the word function is not clearly defined. If you check it out on the web Function definition 28 you will find a long list of possibilities in various contexts. These are as vague and unclear as is the meaning of the word meaning itself.

30 Both of these words, in general, have something to do with the environment, relations and context. Originally the Latin word functiō meant: performance, execution. Simply put, the ability to do something. Function describes relations and possibilities. There is no function as such in the physical world but always the function of something.

Rehabilitation is all about restoring the ability to do something – the ability to sit, stand, walk, communicate, eat, or… For more about description and classification of human functions - look on WHO ICF 29 you will find that it is incredibly complex. Especially brain injuries can disrupt any imaginable function. But being much more advanced than any current machinery, a living organism has a significant level of plasticity and can rebuild its damaged structures according to their function – to some extent depending upon age and tissue types.

Brain plasticity 30 There is a long list of things you cannot do with a damaged brain. So where to begin? The First Sight Evaluation Form gives us some direction on most important functions that were lost.

Some functions are more basic than others and recovering them first is a priority, as it can open the way later for the recovery of more advanced functions.

----------------------------------------------------------------------------------------------------------------When the patient is unable to sit – focus on sitting.

When they achieve stable sitting with good endurance – focus on supported static standing.

When they can stand long enough – focus on supported dynamic standing.

And progress to supported walking…when you achieve this stage, work on endurance and gait with less support – from arm support walker – to the Rolator.

For SLP the first main task is safe swallowing. For OT the first main task is self-feeding.

For psychology and everyone else, it is any kind of communication to express needs.

----------------------------------------------------------------------------------------------------------------We can find a useful description of patient general levels of activity in the pediatrics Gross Motor Function Classification System on Cerebral palsy roadmap 31. The part describing youths between 12-18 years from page 27 of the document has many similarities to adult TBI patients.

Our basic description of patient levels of activity and ability to do something is listed below: 1. Patient remains bedridden, incontinent and totally dependent with NG/PEG tube 2. Patient tolerates sitting in an armchair or wheelchair, totally dependent and with PEG tube 3. Patient tolerates sitting in an armchair or wheelchair, totally dependent and can swallow 4. Patient is able to sit in a wheelchair and can feed himself with one hand 5. Patient is able to sit in a wheelchair and can control an electric wheelchair with one hand 6. Patient tolerates static standing with a standing frame and is ambulatory in electric wheelchair, hemi-wheelchair or standard wheelchair 7. Patient can stand up for transfers and is ambulatory in a wheelchair or electric wheelchair 8. Patient can walk up to 100 m with arm support walker with assistance 9. Patient can walk up to 500 m with arm support walker with supervision 10.

Patient can walk with a Rolator walker or crutches… celebrate this because now it is almost guaranteed he will walk again for the rest of his life – somehow, perhaps with some

31 difficulties, but on his own. And all other functions are based on this ability to walk and interact more with the environment, which will improve as well over time.

Why is the level of a patient’s own activity so important?

Because as you remember, we have limited resources and staffing. And the patient needs thousands of repetitions of movements to rewire his brain. You cannot be around all the time. He is the only one to do the real work by moving his own body by himself. But you should help him to help himself by showing him the right way and giving him the right tools and instructions. And it should be the kind of activity he can do without thinking much, because he does not remember, has poor attention and becomes easily distracted and tired. ___________________________________________________________________________

CHAPTER FIVE. NEURO PHILOSOPHY – CORE STRATEGY OF TBI REHABILITATION THERAPY Imagine the actively moving human body being an electric power station and the brain being a light bulb. Human body power plant 32

More activity = more Power = more Light and more ENERGY to repair broken connections.

32 So why not simply use electrical current directly as did Dr. Frankenstein or as you can see on this David Blaine stunt?

Because it works if and only if the current moves through correct pathways and creates appropriate patterns.

Energy creating patterns in time-space is actually one possible description of our Universe‌ as seen on the red picture below on the right – the others three pictures being neuronal networks. The similarity is striking. Large scale structure of the Universe simulation 33

33

Electrical energy produced by the actively working body, creating correct electromagnetic patterns in the brain is the main tool for TBI rehabilitation, stimulating biological regeneration, rewiring and finally reprogramming of the damaged neuronal network.

The third ingredient we need is time, allowing for thousands of repetitions to engrave the pattern into the brain matter. Frenkel exercises 34

We are treating the brain through our work with the body by intelligent cooperation with the natural healing abilities of the living organism.

The potential for natural healing is not unlimited and decreases with the time elapsed since the injury. That is why our rehabilitation program focuses on functional improvement and minimization of residual impairment within the first two years. After that time, our program will focus more on adjustment of residual impairment, technical help and community integration with impairment.

Time passed since the injury also limits our expectations regarding possible improvement and modifies our therapy strategy. Time is money in a business environment, but no money can buy the time required for the natural healing processes. Increasing the intensity of the therapy and squeezing it into a shorter time does not work well because a healing body can only absorb and process a limited amount of stimulation in a given time.

Imagine your patient to be a cup with limited volume and your therapy possibilities to be a jar of water. If you pour in more than the cup can hold, it will simply be wasted. Fortunately, our cup is alive and can grow slowly over time - and then perhaps you can add some more.

34 After some time, drop by drop and day by day, irrigation can transform a desert into a garden.

Rehabilitation therapy is much more like gardening than repairing broken machinery. The brain is not a machine, not even a complicated computer. It is a miracle of nature and despite significant accumulated knowledge we still fail to understand it fully. More Complex Than a Galaxy 35 One cubic millimeter looks like this

Each cubic millimeter of tissue in the neocortex contains between 860 million and 1.3 billion synapses. Estimates of the total number of synapses in the neocortex range from 164 to 200 trillion. A trillion is a thousand billion. The total number of synapses in the brain as a whole is much higher than that. The neocortex, all by itself, has the same number of neurons as a galaxy has stars: 100 billion. Most of the neurons in the neocortex have between 1,000 and 10,000 synaptic connections with other neurons.

Elsewhere in the brain, in the cerebellum, one type of neuron has 150,000 to 200,000 synaptic connections with other neurons. One tiny neuron can connect to 200,000 neurons. And besides all that, the system is alive, dynamically changing and rewiring itself all the time and running software of unimaginable complexity.

It is so amazing, that it is even difficult to take it seriously, so let’s rather always look on the funny side of life‌

___________________________________________________________________________

35 CHAPTER SIX. A GENERAL DESCRIPTION OF THE COMMON CLINICAL SCENARIOS IN TBI REHABILITATION, ALONG WITH A LONG-TERM THERAPY PLAN This chapter is not meant to cover every individual case. It only expects to give some quick orientation in the most common clinical scenarios, while estimating the necessary amount of rehabilitation therapy and expected outcomes. Time-frames and recommendations are set with a significant safety margin, guaranteeing that no one who has any possibility to benefit from the rehabilitation program will be left behind. It should also help to cope with unrealistic expectations of families and limit the never-ending “therapy� interventions that sometimes only drain financial resources from the unfortunate patient or their desperate relatives.

Recommended rehabilitation therapy tracks provide clearly structured long-term plans combining inpatient stay, outpatient programs (OPD) and home exercise programs.

Repeated inpatient stays are the most important aspect, especially in environments with less developed rehabilitation infrastructure, assuring some continuity of care and guiding the patient and his family on the long road to recovery. In the specialized inpatient setting, the patient will meet people experienced in TBI rehabilitation, who know his case history, can compare and evaluate his progress, refresh his program or adjust it to any new development.

Guarantee regular readmissions at specified time intervals provides strong support to the motivation of both patient and family to persistently carry on these tedious OPD and home exercises.

The length of stay during readmissions can be shortened to 3 or even 2 weeks if our therapy resources are not sufficient, but the intervals between readmissions and number of repetitions should be respected in order to achieve optimal outcome results.

Recommended rehabilitation intervention tracks are longer and more intensive for patients with severe impairment, where only limited personal activity can contribute to their recovery.

A) Patients Included into Rehabilitation Program Early after the Injury.

A) 1. Time Elapsed from the Injury between 3-12 months / Severe Impairment Initial FIM on the First Admission 18-54 Patients in this group will be mostly bedridden or wheelchair dependent and non-ambulatory.

They will need substantial assistance in ADLs. Cognitive and speech impairment will range from severe to moderate, with the possibility of confusion and defensiveness. A significant number of cases can be totally dependent, incontinent and with NG/ PEG tube feeding.

An example of such case may be a patient with severe spastic quadriplegia with multiple contractures, aphasic, incontinent and disoriented.

Patients in this group may have considerable potential for functional improvement and should be treated with full intensity. The typical program for first admission will be 12 weeks of inpatient care, with 3 hours of interventions 5 days per week. Medication and Botox injections may be needed for management of spasticity. An intensive SLP program may be indicated to regain oral feeding and improved communication.

36 The inpatient program should be followed by an intensive OPD program 3 x weekly 3 hours PT, OT, SLP interventions or daily home exercises, carried on by trained full-time caregivers.

The recommended long-term rehabilitation therapy track will be as follows: First admission for 12 weeks followed by an intensive home or ODP program for three months.

First readmission for 4 weeks, three months following the initial discharge and then intensive home or OPD program for next three months.

Second readmission for 4 weeks, three months following the second discharge and then intensive home or OPD program for next three months.

Third readmission for 4 weeks, three months following the third discharge and then home or OPD program 2x weekly for six months.

Fourth readmission six months following the fourth discharge and then home or OPD program 2x weekly for six months.

Fifth readmission six months following the fifth discharge and then home or OPD program 2x weekly for six months.

Sixth readmission six months following the sixth discharge for final adjustment and recommendations of long term maintenance and management.

Surgical interventions may be required two years after the injury for the management of chronic contractures, with appropriate adjustment of a further rehabilitation program.

If the patient receives the above-described course of therapy, his rehabilitation potential can be considered as fully completed and with little probability for further improvement in his resulting functional level, approximately 42 months following the injury, on average. Any further rehabilitation program, especially during the last readmission should focus on assistance to the family and an ongoing life with a residual impairment that may be severe.

A) 2. Time Elapsed from the Injury Between 3-12 Months / Moderate Impairment, Initial FIM on the First Admission 55-90 Patients in this group will mostly be able to ambulate with assistive devices and minimal to moderate assistance and will need moderate assistance in ADLs. Cognitive and speech impairment will range from mild to moderate.

An example of such a case may be a patient with light quadriparesis, ataxia or one-side moderate spastic hemiparesis, with speech and cognitive impairment.

Most patients in this group will have considerable potential for functional improvement and should be treated with full intensity. The typical length of stay for the first admission will be 8 weeks of inpatient program with 3 hours of interventions, 5 days per week. Frequently the length of stay can be extended up to 12 weeks if continuous progress in functional recovery is seen according to measurements with evaluation instruments.

Medication and Botox injections may be needed for management of spasticity. Intensive SLP program might be needed to improve communication. Neuropsychology interventions with cognitive training might be useful.

Inpatient program should be followed by intensive OPD program, 3 x weekly 3 hours PT, OT, SLP or supervised daily home exercises.

37 The recommended long-term rehabilitation therapy track will be as follows: First admission for 8-12 weeks followed by an intensive home or OPD program for three months.

First readmission for 4 weeks, three months following the initial discharge and then intensive home or OPD program for next three months.

Second readmission for 4 weeks, three months following the second discharge and then intensive home or OPD program for next three months.

Third readmission for 2 weeks six months following the third discharge for final evaluation and adjustment.

If the patient receives the above-described course of therapy, his rehabilitation potential can be considered as fully completed and with a low probability for further improvement in his resulting functional level after around 24 months from the injury on average. Rehabilitation programs, especially during the third readmission, should focus on community integration and life with mild to moderate residual impairment.

A) 3. Time Elapsed from the Injury between 3-12 Months / Light Impairment, Initial FIM on the First Admission 91-126 Patients in this group will mostly be able to ambulate independently or with supervision only and with or without an assistive device. They will need no or only minimal assistance in ADLs. Cognitive impairment will be light to moderate, but speech impairment may have various degrees of severity, including aphasia.

An example of such a case would be a patient with spastic mono paresis of one upper extremity, mild memory impairment and/or dysarthria.

Patients in this group have a potential for good or almost full-functional recovery and should be treated with full intensity. The typical length of stay will be 4-6 weeks of inpatient program with 3 hours of interventions 5 days per week.

In exceptional cases, the length of stay can be extended to 8 weeks for a clearly specified purpose related to speech therapy, psychology programs or spasticity management with Botox injections. If needed, in specific cases, the inpatient program can be followed by an outpatient rehabilitation of 3 months in duration with an OPD program and a single 2 week readmission 3 months following the first discharge for final evaluation and adjustments.

The recommended long-term rehabilitation therapy track will be as follows: First admission for 4-6 weeks followed by intensive home or OPD program.

First readmission in specific cases for 2 weeks, three months following the first discharge followed by six months intensive home or OPD program.

Physiatrist follow-up is planned three months from the first discharge after finishing the OPD program and six months from the second discharge in cases of readmission.

If the patient receives such a rehabilitation course, his rehabilitation potential can be considered as fully complete and with low probability for further improvement in his resulting functional level, after around 24 months from the injury on average. Further improvement of eventual light residual impairment is possible over time if the patient

38 continues with regular exercises and is involved with an everyday mundane activity, working, having a family etc.

B) Patients included into rehabilitation programs longer after the injury B/ 1. Time Elapsed from the injury between 12-24 months / Severe impairment initial FIM on the first admission 18-54 Patients in this group will be mostly bedridden or wheelchair dependent and non-ambulatory.

They will need substantial assistance in ADLs. Cognitive and speech impairment will range from severe to moderate with a possibility of persisting confusion, apathy and poor participation in therapy. A significant number of cases in this group can be totally dependent and incontinent, but they will be mostly on oral feeding.

NG or PEG tube for feeding after one year and later is seen mostly in minimally responsive or vegetative cases. Patients will need the same amount of rehabilitation interventions as the previous group, but we will face already developed chronic irreversible secondary complications of immobility, so care may be more demanding and less rewarding.

An example of such a case would be an immobile patient with severe spastic quadriplegia, with multiple spastic contractures, heterotopic ossifications, aphasic, incontinent, and with severe cognitive impairment. At this stage, the patient may already have developed contractures with limited reversibility by conservative therapy.

A patient in this group is already past the prime time for rehabilitation. If they received appropriate therapy in the past, their rehabilitation potential might be significantly reduced regarding the ability to regain any useful independent function. Younger patients may still have some potential for FIM gain, to improve their quality of life and decrease the overall lifelong burden of care for their caregivers.

If the patient received only limited or no rehabilitation therapy in the past, he may still have untapped potential for improvement and FIM gain with appropriate therapy interventions.

During his first admission, he should be treated with full intensity. The typical length of stay will be 12 weeks of the inpatient program with 3 hours of interventions 5 days per week.

The inpatient program should be followed by OPD or home exercises carried on by trained full- time caregivers with appropriate equipment.

39 The recommended long-term rehabilitation therapy track for patients who did not receive previous rehabilitation therapy will be as follows: First admission for 12 weeks followed by intensive home or OPD program for three months.

First readmission for 4 weeks three months following the first discharge and then intensive home or OPD program for next six months.

Second readmission for 4 weeks, six months following the second discharge and then home exercises program for six months.

Third readmission for 4 weeks, six months following the third discharge and then home and community program for six months.

Fourth readmission six months following the fourth discharge and then home and community program for six months.

Fifth readmission six months following the fourth discharge for final adjustment and recommendations of long term maintenance and management.

Surgical intervention may be indicated, if physiotherapy fails, for the management of chronic contractures after two years from the injury, with appropriate adjustment of a further rehabilitation program.

If the patient receives the above-described course of therapy, his rehabilitation potential can be considered as complete - with a low probability for further improvement in his resulting functional level, after around 53 months from the injury on average.

The further rehabilitation program, especially during the last admission, should focus on assistance to the family, community support and ongoing life with a residual impairment that may be severe.

B/ 2. Time Elapsed from the Injury between 12-24 months / Moderate impairment, Initial FIM on the First Admission 55-90 Patients in this group will in most cases be able to ambulate with assistive devices with minimal to moderate assistance and will require moderate assistance in ADLs. Cognitive impairment will range from mild to moderate; speech impairment may be moderate to severe.

An example of such a case would be a patient with moderate quadriparesis, moderate ataxia or one side spastic hemiparesis, with speech and cognitive impairment. At this stage, the patient may have already developed spastic contractures with limited reversibility, especially on the upper limbs.

Patients at this stage are already past the prime time for rehabilitation and if they received appropriate therapy in the past, their rehabilitation potential will be significantly reduced. If patients received only limited or no rehabilitation therapy in the past, they may still have potential for improvement and functional gain.

During first admission, they should be treated with full intensity. The typical length of stay will be 8 weeks of inpatient program, with 3 hours of interventions 5 days per week. In justified cases, the length of stay can be extended to 12 weeks, if progress in functional recovery is seen according to measurement with evaluation tools.

40 Botox injections may be indicated for management of spasticity. Surgical intervention might be required if physiotherapy fails, for management of chronic contractures, after two years from the injury.

An inpatient program should be followed by outpatient rehabilitation or with intensive home exercise programs supervised by a trained family member.

The recommended long-term rehabilitation therapy track for patients who did not receive previous rehabilitation therapy will be as follows: First admission for 8-12 weeks followed by OPD or home exercises program for six months.

First readmission for 4 weeks six months following the first discharge and then OPD or home exercises program for six months.

Second readmission for 2 weeks six months following the second discharge for final evaluation and adjustment.

If the patient receives the above-described course of therapy, his rehabilitation potential can be considered as complete - with a low probability for further improvement in his resulting functional level, after around 36 months from the injury on average. Further rehabilitation programs, especially during the last readmission, should focus on assistance to the family, community integration and ongoing life with mild to moderate residual impairment.

B) 3. Time from the Injury between 12-24 months/ Light Impairment, Initial FIM on the First Admission 91-126 Patients in this group will, in most cases, be able to ambulate independently with or without an assistive device, will need only minimal assistance in ADLs and may have light to moderate cognitive impairment. Speech impairment may vary in severity.

An example of such a case would be a patient with light hemiparesis, quadriparesis, ataxia, monoplegia of one limb, residual faulty gait pattern, memory impairment and/or dysarthria.

If the patient received appropriate therapy in the past, his rehabilitation potential will be reduced. If the patient received only limited or no rehabilitation therapy in the past, he still may have potential for improvement with intensive therapy interventions.

The reason why patients from the group included into rehabilitation longer after the injury, with less severe functional impairment, have a lower rehabilitation potential is obvious.

Being more active than totally dependent and immobile patients, they have already achieved a degree of functional recovery by their own physical and mental activity. Being without the guidance of a rehabilitation professional, they often develop wrong movement patterns and suboptimal functional adaptations that can be only partially reversed. The closer they are to two years from the injury, the less can be done for them.

Nevertheless, during the first admission, this patient should be treated with full intensity. The typical length of stay will be 4 weeks of inpatient program with 3 hours of interventions, 5 days per week. Then you will observe changes in patient functions. In exceptional cases, the length of stay can be extended to 6 weeks if progress in functional recovery is seen according to measurements with standard evaluation instruments.

41 Botox injections may be indicated for management of spasticity in specific cases.

If needed, the inpatient program may be followed by an outpatient rehabilitation of 6 months in duration, with an OPD program and one 2 week-long readmission 6 months after the first discharge.

The recommended long-term rehabilitation therapy track for patients who did not receive previous rehabilitation therapy will be as follows: First admission 4 weeks followed by OPD or home exercises program for six months.

First readmission for 2 weeks six months following the first discharge.

Physiatrist follow-up is planned six months from the first discharge after finishing OPD program and six months from the second discharge in case of readmission.

If the patient receives the above-described course of therapy, his rehabilitation potential can be considered as complete - with a low probability for further improvement in his resulting functional level after around 28 months from the injury on average. Rehabilitation interventions during the readmission will focus on community integration and life with light residual impairment. Further readmission is not planned and can only be accepted under clear, mostly community integration, vocational or educational goals.

C) Patients Included into Rehabilitation Program Too Late Long after the Injury.

C) 1. Time from the Injury over 24 Months / Severe Impairment, Initial FIM on the First Admission 18-54 Patients in this group are similar to the B1 group. The main difference is their rehabilitation potential is even lower.

Patients in this group will be mostly bedridden or wheelchair bound and non-ambulatory.

They will need substantial assistance in ADLs. Cognitive and speech impairment will range from severe to moderate with poor participation during therapy. Occasionally, we have seen patients who recovered well cognitively some two years following injury, but remained totally dependent in all other activities, being close to the situation of the Locked In syndrome or advanced ALS. A significant number of cases in this group can be totally dependent, incontinent but they will be mostly on oral feeding. If the patient has NG or PEG tube for feeding after two years, he might be minimally responsive or vegetative.

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An example would be an immobile patient with global aphasia, severe spastic quadriplegia with multiple spastic contractures, heterotopic ossifications, incontinent and with cognitive impairment. At this stage, the patient might have already developed contractures not responding to any conservative therapy.

Patients in this group are already long past the optimal time-frame for rehabilitation and if they received appropriate therapy in the past, their rehabilitation potential will be very limited or none, especially regarding the ability to regain any useful independent function.

They may still have some potential for improvement in quality of life with advanced equipment e.g. eye controlled AAC or electrical wheelchairs, if they are able to use them.

Prescription of equipment for home care and education of the family in maintenance programs might be the only goal for admission.

If the patient received only limited or no rehabilitation therapy in the past, he may still have untapped potential for improvement and FIM score gain with intensive therapy interventions.

Some patients can achieve surprising improvement, even after many years, if their functional impairment is caused mainly by long time inactivity following the injury and not by the severity of the brain injury itself. We have seen neglected patients with ataxia who regained the ability to walk with a walker after four and six years of being non-ambulatory.

Considering the gravity of such cases, we recommend offering them an initial course of a 4 week intensive inpatient rehabilitation program during their first admission, when they should be treated with full intensity for 3 hours daily, 5 days per week. Re-evaluation after initial 4 weeks will be done and, if functional improvement with potential for further progress is seen, the inpatient length of stay can be extended up to 8 weeks.

Inpatient programs should be followed by home exercise programs carried on by educated trained professional, full-time caregiver or trained family member with appropriate equipment, if any functional goal to be achieved has been clearly identified.

The recommended long-term rehabilitation therapy track for patients who did not receive previous rehabilitation therapy, showing some improvement or potential will be as follows: First admission for 4-8 weeks followed by home exercises program for six months.

First readmission, if indicated, for 4 weeks, six months following the first discharge and then home exercises program for six months.

Second readmission for 4 weeks, six months following the second discharge and then home exercises program for six months.

Third readmission for 4 weeks, six months following the third discharge and then home and community program for 12 months.

Surgical intervention may be indicated for management of chronic contractures with appropriate adjustment of a further rehabilitation program, but only in cases of clearly expected and well defined functional gain. If there is nothing to improve in patient function, we must avoid unnecessary surgeries. Botox injections are only rarely helpful as well.

The unnecessary discomfort and suffering of patients caused by interventions with no clear or achievable goals should be avoided!

43 If the patient receives the above-described course of therapy, his rehabilitation potential can be considered as completed and with a low probability for further improvement in his resulting functional level upon finishing the program. Readmissions for respite care will focus on assistance to the family and maintenance to prevent functional deterioration and secondary complications of the residual impairment that might be severe.

C/ 2. Time from the injury over 24 months / Moderate impairment initial FIM on the First Admission 55-90 Patients in this group will in most cases be able to ambulate with an assistive device and minimal to moderate assistance in ADLs. Cognitive and speech impairment will range from mild to moderate.

An example of such a case would be a patient with light to moderate quadriparesis or ataxia or one side spastic hemiparesis, with speech and cognitive impairment. At this stage, the patient may have already have developed spastic contractures with limited reversibility. Some patients may have persistent behavioral disturbances.

Patients at this stage are past the optimal time for rehabilitation. If they already received previous appropriate treatment, their potential for functional improvement will be very low or none. If the patient received only limited or no rehabilitation therapy in the past, they might still have some dormant potential for improvement with special therapy interventions.

During the first admission they should be treated with full intensity, so we can clearly recognize if there is any potential for improvement, or the family can be convinced that there is nothing further to improve despite an all team effort. The typical length of stay will be 4 weeks of inpatient program with interventions 3 hours daily, 5 days per week. In justified cases the length of stay can be extended to 8 weeks if progress in functional recovery is seen, or if regaining of at least one important function is possible. One readmission only is planned in justified cases.

If needed, the inpatient program can be followed by outpatient rehabilitation or home exercise programs supervised by educated trained family member.

The recommended long-term rehabilitation therapy track for patients who did not receive previous rehabilitation therapy, showing some improvement or potential will be as follows: First admission for 4-8 weeks followed by OPD or home exercises program if needed for six months.

First readmission, if indicated, for 4 weeks six months following the first discharge and then intensive home program for six months.

Physiatrist follow-up is planned six months from the first discharge after finishing the OPD program to evaluate results and decide about the necessity of a readmission.

If patients receive the above-described course of therapy, their rehabilitation potential can be considered as completed - with a low probability for further improvement after finishing the program. Any further rehabilitation interventions should focus on maintenance to prevent functional deterioration and secondary complications, on community integration and life with light to moderate residual impairment. Further readmission is not planned and can only be

44 accepted in the case of functional deterioration to restore lost functional level, or to achieve some community integration, vocational or educational goals.

C/ 3. Time from the injury over 24 months / Light impairment Initial FIM on the First Admission 91-126 Patients in this group will in most cases be able to ambulate independently with or without an assistive device, with minimal assistance in ADLs and light to moderate cognitive impairment. Speech impairment can range in severity.

An example would be a patient with spastic mono paresis of one upper limb, light hemiparesis, residual quadriparesis, ataxia, balance impairment and/or dysarthria, or patient with persisting memory problems or behavioral disturbances related to the brain injury.

Patients in this group are mainly candidates for counseling, outpatient programs or education of home exercises and life adjustments.

If the patient received no rehabilitation therapy in the past and is evaluated as having a potential for improvement, he can be admitted, treated with full intensity during the first two weeks and then re-evaluated. If measurable improvement is found, he should continue with intensive therapy during the following 2 weeks of the inpatient program.

If no significant improvement is found, rehabilitation program for second two weeks of admission will focus on trainings for home exercises and maintenance programs, as well as adjustment of the residual impairment, vocational and community integration and psychology support.

Further extension of the length of stay beyond 4 weeks is not expected. Readmission is not planned. The outpatient program is justified only for patients with ongoing measurable improvement in any function and will be 3 months in duration.

The recommended long-term rehabilitation therapy track for patients who did not receive previous rehabilitation therapy will be as follows: First admission for 4 weeks followed by OPD or home exercises program for three months.

Physiatrist follow-up is planned six months from the first discharge after completing the OPD program. Further readmission is not planned and exception can be only be made with clear, mostly community integration, vocational or educational goals. Further improvement of eventual light residual impairment is possible over time if the patient continues with regular exercises and is involved with everyday life activities, working and having a family.

45 At the current stage of medical technology, after 3-5 years from the injury, it is necessary to accept that no expense, extensive effort, medication or stem cell transplants can bring further functional improvement. Some interesting reports concerning improvement in chronic conditions after TBI are nevertheless related to Transcranial magnetic stimulation Transcranial magnetic stimulation A possible treatment for_TBI 36 and EMG-triggered neuromuscular electrostimulation as on https://www.biomove.com/ 37

ACCEPTANCE of some functional loss, after moderate to severe brain injury and going on with life with impairment, seems nevertheless to be the most reasonable choice. And if you want to add health benefits to a pleasant life experience, for decent expenses it is always possible to go for spa and rehabilitation programs e.g. in the Czech republic ‌

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46 CHAPTER SEVEN. BASIC RECOMMENDATIONS FOR REHABILITATION THERAPY DURING THE FIRST YEAR Patient perseverance in exercises with thousands of repeated movements is the key for rewiring the damaged brain network, stimulated by bioelectric signals originating from working muscles and joints.

A) Spasticity and Contractures Management.

Brute Force is perhaps a last resort in the Military, but never in physiotherapy. We should be more like the Secret Service and switch off the defensive mechanisms of the patient with intelligent use of neurophysiological programming. That’s better than fighting with a patient, causing him to fight with us, bringing discomfort and suffering to both parties. Contractures should never be forcefully stretched, because releasing them gently works better.

Never use anything aggressive (do not even use this word) – you will never repair a broken computer with brute force – so don’t try it with a human brain.

Passive exercises or passive stretching is hard work for the therapist but has only limited benefits for TBI patients. The best source of bioelectrical signals for brain regeneration are actively working muscles and joints. Simply increasing the tone of a paralytic muscle is more useful than moving a body part passively. Always remember – you are not treating the spastic or paretic part of the body - the brain is the target and the whole body should be involved in the anti-spastic exercises. Increasing activity and tone of agonists will release the tone of the antagonists.

Postural reflexes and unconscious movement pattern stimulation can be used even for cognitively impaired non-cooperative patients. This area of neurophysiology is complicated, so we recommend just three simple intervention strategies (besides medication and gentle dynamic splinting).

1. Prolonged static sitting with both (or at least one) legs touching the ground and upper limbs positioned freely along the body

47 2. Static tilting on a tilt-table with the support of one or both legs

with gradual progression to the static standing with support of standing frame or platform walker.

3. Prone positioning - Almost all spasticity is in flexion patterns. Prone position activates extensors and releases flexion spasticity by reciprocal innervation mechanism. Use pillows or mats to support the patient if he cannot tolerate lying on the flat surface.

Encourage the patient to stay in prone position during part of the day. Encourage the caregiver to help him with it at home.

48 In the upright position, the force of gravity helps release flexion contractures of the upper limbs, in elbows and will also stimulate antigravity extensor muscle groups. On the lower limbs, extensor patterns will be activated by standing, which will help to release flexion contractures in hips and knees. Body weight will help to release plantar flexion contractures of ankles.

By simply positioning the patient into these three patterns, you will treat contractures of elbows, hips, knee and ankles at the same time without moving a finger yourself. You can also treat another patient at the same time, simply supervising the positioned patient.

Gentle dynamic splinting is the fourth measure for contractures management. Gentle means causing no pain, significant discomfort, discoloration or pressure marks. Otherwise, the patient will avoid using the splints and you will not be around all the time to supervise him.

Dynamic means changing over time, with adjustment made according to the developing patient condition.

If your therapy works and the contractures are released, you will have to change the splints a couple of times during your treatment. There is a difference between dynamic splinting and static splints that are used to support one fixed position in chronic contractures or paralysis.

There are a lot of nice dynamic splints coming to the market recently, especially for the hand SaeboFlex 38

But unless they become cheaper and more easily available, we will recommend three basic tools.

1. Knee braces with adjustable joints that can gradually release the knee contractures and knee immobilizers to stretch and support semi flexed or unstable knee.

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2. Elbow brace with adjustable joints to gradually release the elbow contracture

3. AFO in various forms and combined with a light sport shoe to support the ankle against plantar flexion and inversion

4. For the hand – thermoplastic splint will most likely be available everywhere – if not, you can be creative with a simple tennis ball and elastic bandage.

Serial casting is uncomfortable, clumsy, obsolete and should not be used anywhere anymore.

It is also becoming more expensive than ready-made braces and splints on the market.

Splinting should preferably be done for the night. The patient will tolerate it better when sleeping. During the day you should use another method to release spasticity as described above and try to stimulate any active antispastic movements in the contracted motoric segment, instead of immobilizing it.

50 What to avoid: 1. DO NOT CAUSE ANY PAIN – IT INCREASES SPASTICITY 2. Avoid mechanically repeated exercises in only flexion patterns 3. Avoid tissue damage by overload – be patient yourself with the patient

B/. Static standing - Verticalization REGAINING UPRIGHT POSTURE IS THE SINGLE MOST IMPORTANT THERAPY INTERVENTION for patients who are immobile or confused. The following strategy proved to be successful even for severe cases of spastic quadriplegia with multiple contractures.

1. Minimize the time when the patient stays in bed during the day. Together with nursing staff and a caregiver, assure that the patient is at least sitting in a wheelchair or on the Geri chair as much as he can tolerate. The patient should touch the support or the ground with his feet when sitting to get proprioceptive feedback. A bed should be used on rehabilitation wards only for night sleep or a nap after lunch.

2. Manage flexion spasticity patterns by prone positioning of the patient.

3. Use hinged knee braces and knee immobilizers for gradual release of knee contractures.

4. Use elastic AFOs with sports shoes for ankle contractures release and leg support 5. Gradually tilt up patients on the tilt table in repeated sessions until they can tolerate 45 min at 90 degrees tilt.

6. Stand the patients up with a standing frame and keep them standing as much as they can tolerate, repeatedly during the day until they achieve the ability to tolerate at least 45 min of supported static standing. Use knee immobilizers or knee braces and AFOs if needed to maintain upright posture.

7. Progress to static and then dynamic standing with the Arjo and platform walker.

If verticalization is impossible due to flexion contractures of lower limbs, give priority to wheelchair mobility. Even electric wheelchair mobility gives significant stimulation to the patient’s brain, compared to only sitting.

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C) Gait Training.

1. If the patient can manage dynamic standing with an Arjo walker, progress to the short gait. At the first stage, any gait is good as long as the patient can cover some distance.

Time to correct semi-flexed, twisted or other wrong gait patterns will come later.

2. Increase walked distance as per patient tolerance by gradually increasing focus on the proper gait pattern.

3. If the patient can walk with the Arjo walker for 100 m, progress to the Platform walker 4. Continue with endurance gait training using a platform walker. Educate the caregiver in gait training and get a patient-owned platform walker to have in his room.

5. Continue with gait training with a platform walker as much as the patient can tolerate e.g – 3 to 5 times for 30 min daily with a rest in between. Caregiver should participate on it as well; sometimes he will carry on gait training at home for many months.

6. If the patient achieves the ability to walk with a platform walker for 500 m, progress to the Rolator walker or front-wheeled frame walker.

7. To walk with a frame walker or rolator, you will need at least a global grasp of the hands and some extension of the upper limbs. Botox injections may be helpful for spasticity release, as well as previous PT-OT co-treatment to achieve this ability.

53 Once the patient can walk with a Rolator on his own, you can focus more on coordination exercises and correction of global movement patterns. This will also apply for patients with light and moderate impairment.

GAIT TRAINING IS BY FAR THE MOST IMPORTANT EXERCISE!

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D) Global Movement Patterns and Coordination Training We do not remember how we managed to develop our mobility during our first 18 months of life, but we can watch movies of little kids doing it. The movement patterns for lifting the body by their arms when lying prone, to roll from side to back, to grasp objects and put them into their mouths, for kneeling, sitting and crawling, are encoded on the deepest level of our motor programming and cannot be destroyed easily. gross-motor-milestones 39 You can use these motor milestone subconscious patterns for exercises and do not need much of the patient’s cognitive involvement for that.

It will be simple for the patient to remember: 1. Crawling 2. Kneeling and standing on all fours – static, dynamic 3. Standing on three and reaching with one free hand – static, dynamic 4. Balance exercises on unstable platforms Praying Salaat in the regular pattern – most important for regular home-based program in Islamic areas – for others you can develop similar simple easy to remember exercises e.g. based on popular Five Tibetan 40

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With persistent effort, the time will come to celebrate a success story

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56 CHAPTER EIGHT.

THE ECONOMY AND FEASIBILITY OF THE LONG-TERM REHABILITATION PLAN The main principle of economic TBI rehabilitation is simple: Do not give your patients everything you have, and can give, or everything they are willing to pay for. Give them only what they need most at any particular stage. The best is called OPTIMUM – not maximum.

It means that you need to know where this optimum is, at any particular stage, and what brings any measurable positive functional change in the patient’s condition. You should separate it from interventions, which are just an entertainment to keep the patient busy, happy, or keep them and their families in a denial stage about the sad truth of the permanent loss of some functions. Pretending effective therapy or procedures, feeding false hope and taking money for that is absolutely unethical in all known moral systems.

Even good, willing therapists, who are not running any scam therapy scheme to reap money from their patients or sponsors, are sometimes able to convince themselves that obviously inefficient interventions are bringing some, at least psychological benefits. Or that they are just being polite and protecting the patient from sadness, depression or pain by knowing the harsh reality.

They are not protecting the patient from being hurt by the truth. They are actually protecting themselves from being hurt by the emotional response of the patient to the truth. Both parties are in a state of nonverbal and mutually agreed denial. One side feeds false hope and the other prefers sweet lies over inconvenient reality. In the end, both parties are wasting time and limited resources.

Another important principle for therapy optimization is that the patient can only absorb a certain amount of exercise and stimulation at any particular stage and still achieve a positive response. Giving more than this optimum is just a waste of our effort and the patients money.

Time is needed for biological regenerative processes to happen and that cannot be shortened by any amount or intense therapy.

I have heard a complaint, that in some cases, there was no difference in results between giving 5000 USD worth of interventions daily and no interventions at all‌This is absolutely possible, but it is also a total misunderstanding of the methods and possibilities of rehabilitation therapy, as an intelligent cooperation with natural healing capabilities of the body.

Imagine you are really hungry and someone invites you to a banquet with unlimited food for free, inviting you to eat it all. How much can you eat in one evening? You are not a python that can eat a lot, but only 3 times per year, right?

57 It will be much better for you if you had limited, simple, healthy, regular food every day for a whole year.

Or better imagine that you are growing a palm tree in the desert that needs a regular water supply. Drop by drop, every day for many years to come it will slowly grow…

For neuronal connections to grow in the brain it is the same story. Exercises and stimulation are like drops of water. Given regularly and for a long time, they will bring fruits. Short-term flash flooding is not a good strategy.

To find this optimum is especially difficult for private, for-profit healthcare businesses that sometimes treat patients with healthy financial resources. And again, it is not bad will on their side. They are simply trying to survive economically. And it is so difficult to say – we are not going to give you this therapy because it will not help you, if you (or someone else) is willing to pay for it anyway. So you will see therapy being given a long time after any real possibility to improve any function is already lost. And sometimes you will even find studies defying common sense, supporting this practice using the smoke-and-mirrors of statistical magical trickery.

For the public non-profit sector, there is another important non-medical factor motivating delivery of unclearly justified interventions and activities. It is a political demand for jobs creation in a public healthcare system in rich countries with high unemployment rates. This factor might even increase with the advent of the Fourth Industrial Revolution. Nobody can really have many objections against it unless he finds some better solution.

Rehabilitation of our less fortunate impaired fellow human beings is actually a great idea for spending time and resources, especially if one accounts for the spiritual benefits of this business. This is actually a reasonable way to find a useful occupation for people who may otherwise be idle. But again, certain restraints are needed. In fact, lesser demand for human work in other economic sectors will be balanced by increasing demand for healthcare services due to aging global populations in the future.

So let’s expect that even in the future we will work in healthcare with limited resources and staffing and that’s why we have to avoid unnecessary treatment as much as we can. We will be wasting around 20% of our work anyway due to misjudgments and mistakes. It’s tricky and difficult to predict the variable natural history of a patient’s recovery and inevitable influence of strange natural laws as is the Pareto_principle 41 100% effect of any human activity is impossible to find anywhere and healthcare is no exception.

58 Nobody has yet found an optimal healthcare funding system and there is an amusing fairy tale about it.

Sleeping Beauty Public Healthcare was born and three fairies came with their gifts. The first said “It will be free of charge.” The second, “It will be available for everybody.” The third, “It will be of the best possible quality.” Then the fourth evil fairy enters and says, “But you will never have all these three gifts at the same time.”

Since then, all healthcare systems are either free of charge for all (but not of the best quality), or free of charge and of the best quality (but not for all), or of the best quality and for all (but not free of charge). Prince charming is not coming to solve this with some magic kiss and all healthcare systems seem to struggle with this curse Health systems 42 The Wise King, with a Holy Grail of Scientific measurement, is needed to decide what is reasonable and when, exactly how much of what to give and when to stop. Unfortunately, we have not yet found it. Maybe we did not even try hard enough…?

It is clear what free of charge and available for everybody means. But the issue of best possible quality is a tricky one. Quality 43 Mixing up of fuzzy philosophical meaning of this term, with its pragmatic business understanding, is common in healthcare management. But even though healthcare delivery can be approached as a product, the final goal of all healthcare - health itself is not.

59 A nice but somehow unrealistic approach for lower GDP per capita countries, defining quality in rehabilitation, can be found at CARF http://www.carf.org/Programs/Medical/ 44 We hope the future will bring us closer to this ideal.

We can see modern medical technology saving people who did not survive in the past. The long-term survival of people with extreme functional damage, such as quadriplegia, that was not possible in the past is common now.

But if we saved someone’s life at a great cost, resulting in severe impairment – and then by being stingy with rehabilitation let him suffer from his impairment as a burden to his family or society – we have missed something important. We missed it, not only in our heart, but also in our elementary economic logic.

We know from clinical observations that patients, after TBI, especially in severe cases, who remain immobile do not improve by passing time alone, without rehabilitation. Strictly for scientific and ethical reasons it is impossible to run any randomized controlled trial of intervention compared to non-intervention for TBI rehabilitation.

But it is possible to investigate what happened to those patients who failed to receive rehabilitation in the past due to its unavailability. We have seen enough of those patients who failed to get systematic rehabilitation during either one or two years after their injury and we know exactly what is happening to them.

They are suffering, developing contractures and other complications from immobility. And we managed to remobilize many of them for modest costs with moderate effort.

The life expectancy of TBI patients might be shortened, but it is still very long. Consider someone suffering a TBI at the age of 25 and then being non-ambulatory, unable to feed himself and incontinent for 50 years to come. Consider the costs of care and treatment of all secondary complications from their immobility. Then and only then you can compare it with the costs of rehabilitation therapy given during the first years.

Especially during the first two years after injury, major functional gains can be achieved with persistent exercises. Patients may regain the ability to walk or move in a wheelchair, feed themselves and take care of their basic hygiene, if nothing more.

Below we summarized our humble approach to this difficult task in a shortened graphic description of recommendations from Chapter 6: PROPOSED SOLUTIONS ARE ADJUSTED TO SPECIFIC CONDITIONS: These are the treatment possibilities in the Sultan Bin Abdulaziz Humanitarian City, considering the economic, environmental and cultural conditions available in Saudi Arabia under AH 1439/2017, taking into account: Uniquely hard natural conditions with extreme climate.

Long distances between few large size urbanized areas.

A society focused on spiritual development alongside technological advance.

Specific stratification of the community in Saudi Arabia.

60 The ability of families and extended families to provide long-term care and support for the impaired family members, and carry on home-based therapy programs.

Limited accessibility of outpatient, community-based and home health care services.

Limited network of professional, vocational and community re-entry services.

Limited capacity of available inpatient rehabilitation services.

Case mix of patients with predominantly severe functional impairment and limited mobility.

IN EVERY COUNTRY YOU ARE SUPPOSED TO ADJUST LONG TERM PLANS TO LOCAL CONDITIONS AND RESOURCES We are not claiming to always have 100% success with this plan for everybody. Some of our patients tend to plateau sooner functionally. The maximum possible recovery is achieved after three to four admissions at the end of the second year of rehabilitation. We are not yet able to clearly identify all predicting factors for it. It seems probable, but not sure, that patients of higher age and with more severe impairment will reach the maximum possible recovery plateau sooner. Our plan has significant safety margins preventing under-treatment.

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62 CHAPTER NINE. GENERAL DESCRIPTION OF THE COMMON CLINICAL TYPES OF TBI IMPAIRMENT, WITH GOALS AND BASIC THERAPY RECOMMENDATIONS. For the following description: Lower extremities are noted as LE, upper extremities as UE. The age of the patients is supposed to be in the range of 15 to 35 years. Patients are male and their first admission is within the first year from the injury.

Severe plegia is muscle strength below 3. Moderate plegia (paresis) is muscle strength from 3 to 4. Severe spasticity is Ashworth scale from 3 to 4. Moderate spasticity is Ashworth 2 to 3.

To make descriptions shorter, muscle strength can be noted as M and spasticity in Ashworth scale as S. Examples: Muscle strength below 3 and spasticity above Ashworth 3 will be noted as M<3/S>3. This is also a clinical situation in which any useful function is mostly lost. Muscle strength above 3 and spasticity less than Ashworth 2 will be noted as M3>/S<2 and this is defined as a clinical situation where some useful function might be still possible.

If you choose to specify sides, you can add R for right and L for the left so the resulting notation will be RM<3<LM/RS>3>LS = Right side muscle power is below 3 and left muscle power is above 3, right side spasticity is above 3 and left side spasticity is below Ashworth 3.

The below described types and various stages of recovery of TBI patients can be either seen on admission, during rehabilitation processes or as a resulting functional outcome.

SITTING ONLY STAGE: A0) Patient with Severe Spastic Tetraplegia M<3/S>3 and NG/PEG Tube for Feeding As can be clearly seen, this unfortunate patient cannot do most anything on his own, except for opening and closing the eyes and mouth and residual movements of the hands. Being often aphasic on top of severe motoric impairment, this condition is similar to the Locked-In syndrome, depending on the severity of cognitive impairment. If the patient is admitted early after injury, there is hope for some functional recovery in coming months. For chronic patients, the chance to regain any function is low.

The most important goal to achieve at this stage is regaining the ability to sit with sufficient endurance. Another important goal is to regain oral feeding. Sitting posture supports the training of oral feeding and cognitive reorientation.

63 You should get your patient out of the bed, preferably into a wheelchair, so he can be moved around and receive passive ROM exercises. When sitting, the patient should touch the ground or leg rests with both legs, to get proprioceptive and sensory feedback and stimulation.

Upper limbs should be left free and unsupported to allow the force of gravity to release elbow flexion contractures.

Equipment required: Hospital armchair, reclining wheelchair, adjustable seating systems, pillows, splints, soft or Philadelphia Collar. Spasticity management with medication can be accomplished with Baclofen up to 20 mg tid, combined with Dantrolene up to 75 mg tid for adults of average weight. Neurontin or Tramadol is sometimes useful to decrease spasticity related pain and facilitate positioning and exercises.

When the patient regains the sitting position, his brain gets more proprioceptive stimulation from joints and muscles, stimulated by the force of gravity and forced to work against it.

There is no need for active patient cooperation for sitting. When alert, they can follow their surroundings and receive more sensory input along with the possibility to interact with their environment. Oral feeding is easier in the sitting position as well. Stimulation of autonomous regulations related to blood pressure, fluid distribution, breathing, GIT and renal function will enable better overall body function and improved energetic metabolism.

The only risk from long-term sitting is development of pressure sores during the acute stage â&#x20AC;&#x201C; but generally it is not more common than with a bedridden patient and can be prevented by seating cushions and limited sitting time in the beginning. Later on, the risks from prolonged sitting are minimal or none compared to e.g. SCI patients.

For immobile patients, we recommend gradually increasing the time of sitting to 3 hours in the morning and another 3 hours in the afternoon, with bed-rest after lunch. In an optimal situation, a younger, even totally immobile patient will stay in bed only for night sleep.

During the early stages of rehabilitation and up to two years from the injury, the patient will be subjected to gentle release of spastic contractures with physical modalities, dynamic splinting, passive ROM exercises with no pain, passive exercises with motor driven therapy systems such as Motomed, overall sensitive, sensory and orofacial stimulation by the PT, OT and SLP. Verticalization on the tilt-table and prone positioning, if possible, will be done in addition to sitting.

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Spastic contractures of limbs are common and if no motor-function is regained during the first two years, they are likely to become permanent. Mostly the severity is not equal on both sides and sometimes it is reasonable to accept permanent loss on one side, focusing all our treatment time and effort only to the side where some recovery may be possible. Splinting only can be done for the other side.

Splinting itself is a tricky business and studies concerning it are controversial regarding its efficacy. The main reason it does not work that well in clinical practice is that patients are actually not wearing splints most of the time. Splints are simply uncomfortable because they are always supposed to exert minor pressure on the splinted area. The more therapists correct by adding correction angles, the more resistance they can expect from the patient in using it.

A sensitive approach is required when adjusting correction levels step by step, changing and adjusting splints accordingly. This is demanding work that takes time and consumes material.

Our effort and patient discomfort is justified during the first year for sure, during the second year only to some extent and later on only exceptionally. Splinting should only be one part of comprehensive contractures management, including Botox injections, physiotherapy and occupational therapy interventions. Splints should preferably be used at night. During the day, active movements or stimulation of the affected body part should be emphasized.

Surgery for contractures is not recommended, or only exceptionally during the first two years.

In our clinical practice, we have seen sometimes unexpected releases of very severe flexion contractures, mostly of the lower limbs, resulting from intensive physiotherapy and regaining walking, related to progress in brain healing and rewiring.

Most of our patients in the M<3/S>3 group will be aphasic and cognitively impaired with poor ability to communicate. In case that they will have sufficient cognition, attention and head-eye control, you can try to train their AAC communication with simple tools such as a letter board. Eye communication/computer access devices will, we hope, be available soon to lower costs.

With good and persistent care, we can hope that the patient will improve from this level of immobility and total dependence to at least the next A1 level:

A1) Patients with Severe Spastic Tetraplegia M<3/S>3 on Oral Feeding Management of this patient will be largely similar to the previous example, except for training of the swallowing function. This situation is common for severely impaired patients treated longer after the initial injury, as described in Chapter 6. B) 1 and C) 1 groups. Oral feeding might be the only function previously regained.

65 If no useful function of upper extremities can be achieved, but cognition recovers well, the patient might still have a chance to achieve the ability to control an advanced electrical wheelchair (operated with head or mouth) in the future. Most of our patients achieved some ability to control standard electrical wheelchairs despite severe mobility impairment of both upper limbs.

One hand is often less impaired. With some residual mobility and persistent training, it can be used for EWC control and, if cognition is sufficient, for communication using a tablet.

In clinical practice, recovery of function does not always come in a gradual sequence. It is possible to see aphasic patients, still with PEG tube, able to control an electric wheelchair safely with one hand, but unable to read and use a computer. Occasionally, there were young patients able to walk but unable to safely swallow. Or you may meet a patient unable to sit, because of contractures and heterotopic ossifications, but tolerating oral feeding well and having good cognition and one hand function.

But in general, it is possible to presume that static sitting, head and eyes control and orofacial function and cognition are interrelated, cognition being the most limiting factor for rehabilitation and functional recovery.

Patients with good cognitive function, even with heavily impaired motor body function, can still lead an active psychological life through communication with others. An example from the pre- technological past is the case of Dominique Bauby with Locked-In Syndrome and the more recently well-known example of Professor Steven Hawking. https://www.slideshare.net/assistive-technology-for-computer-access-and-communication Sometimes surprising improvement in cooperation, relative to the admission state, can be seen with seemingly minimally responsive, totally dependent and long-term immobile patients.

We must nevertheless be aware of certain ethical dilemmas related to waking those previously blissfully unaware and extremely impaired patients to more alert and active states.

Pushing them too hard is not reasonable and pain should be avoided at all times.

Rehabilitation experiences and increased levels of activity should be enjoyable, or at least free of suffering for the patient. They should bring both lasting benefit for the patient and reduce the burden of care for his family.

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ELECTRIC WHEELCHAIR STAGE: A2) Patient with Severe Spastic Tetra or Triplegia M<3/S>3 on Both LE and One UE. Patients with this type of impairment can be a result of rehabilitation of the above mentioned two types of impairment or can be admitted as such. A single functional upper limb is supposed to be better than M<3/S>3 with some, even minor, useful functioning possible. This clinical situation is rather common.

Again, the most important goal is to get the patient out of the bed. If his cognition is good enough, make him ambulatory in an electric or hemi-wheelchair. His functional hand can allow some participation on ADLs such as self-feeding and control of the computer.

If he is aphasic, with sufficient cognition, he can be educated in the ability to communicate by typing and using a smartphone or tablet. In our clinical practice, we have only rarely seen any significant recovery of speech later than one year after the injury, even with persistent speech therapy interventions.

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The common minimal set of goals for these three types of impairment is: Good sitting endurance, oral feeding, preferably with the ability to feed himself with one hand, the ability to control an electric wheelchair, communicate with AAC and control a computer. If nothing more can be achieved during the first two years from the injury, it is still a major functional improvement compared to immobile, bedridden and totally dependent state on admission. Regaining of continence will depend mainly on the level of patient cognitive impairment.

Patients from the above-described groups often have severe flexion contractures of one or both lower limbs on admission. If at least one lower limb can be released and used for static standing support, it may be possible to progress to: STATIC STANDING STAGE - TILT TABLE:

And if both lower limbs can give some support, progress can be made to: STATIC STANDING STAGE - STANDING FRAME: This is also a clinical scenario on admission, for most of the patients in the following group.

68 B) Patient with Spastic Tetraplegia Severe on One Side and Moderate on the Other M<3<M/S>3>S The occurrence of this type of impairment is common. Patients with this type of impairment are most likely non-ambulatory with an asymmetrical function loss in upper and lower extremities.

The patient will be able to sit up with moderate to maximal assistance; static sitting will be stable with back support only. If he does not have flexion contractures of lower limbs, he might be able to stand with maximal assistance or with a standing frame. If he does have LE spastic contractures, our primary goal will be to release them.

The main short-term goal for these patients, after achieving a stable static sitting, will be to tolerate supported static standing with endurance for at least 45 min on the tilt table. The next goal is to progress from the tilt table to the standing frame and later on to the platform walker.

If our patients were unable to progress from well supported static standing with a standing frame to less supported dynamic standing with a platform walker during the first three months of rehabilitation, we recommend to continue with static standing with a standing frame at home 3 x 30 min daily for another three months. Then they will be readmitted for a second attempt with verticalization and to progress further to: DYNAMIC STANDING STAGE â&#x20AC;&#x201C; ARJO / PLATFORM WALKER: The next step after the fixed standing frame is to achieve the ability to stand with a moveable but heavy and stable Arjo walker. Less severe cases can sometimes progress directly to a lighter platform walker. If they can manage to stand with this device with 15 minutes endurance, they can progress further and attempt to make few steps.

To facilitate the ability to walk with a platform walker, it is necessary to achieve the ability to hold it well at least with one hand, that which has a better grasp. The other hand can be hooked or strapped passively on it with weight support resting on the forearm. The weaker lower limb should be supported with a knee immobilizer and AFO to prevent knee buckling and foot drop or to correct knee or plantar flexion contractures.

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ASSISTED DIFFICULT GAIT WITH A PLATFORM WALKER STAGE: Most younger and new patients with M<3<M/S>3>S levels of impairment can achieve this level of mobility during the first three months of rehabilitation. Yet further development can vary greatly, depending on age, severity of the injury, time and additional complications.

Heterotopic ossifications or fixed contractures in non-functional position can prevent further progression to independent walking. Patients with poor cognition, motivation or insufficient support by caregivers can get stuck anywhere on the way between the ability to stand for transfers to the ability of independent functional indoor walking with a support.

In that case and if no further progress in functional walking can reasonably be expected, the patient will need a wheelchair for independent indoors mobility and an electric wheelchair for community ambulation.

The platform walker is an excellent gait-training tool, but not very practical for independent ambulation and has only limited use outdoors. As a training tool it is useful for lifelong daily gait training exercises at home and as maintenance to prevent deterioration of functional movement. In some cases and with really well-motivated patients, we have seen further

70 improvement and progress to the Rolator after two years of training, but only in rare circumstances.

If the patient is newly admitted and does not progress beyond this stage after first three months of rehabilitation, he will be recommended for continued, intensive, regular 5 x 30 min daily gait training with a platform walker as well as with his caregiver at home.

After three to six months of persistent home training, the patient can be readmitted for another attempt to progress further to: SUPERVISED EASY GAIT WITH ARM SUPPORT/ PLATFORM WALKER STAGE: Under favorable circumstances and with good progress toward functional recovery, the patient will achieve an ability to walk with a platform walker for 500 m. Under optimal conditions, this should happen during the first year following his initial admission. At that time the patient is also expected to regain the ability to feed himself, participate on ADLs with one hand and communicate by simple speech or by typing. With timed toilet training, he is expected to at least regain bowel control.

71 To summarize: You admit the M<3<M/S>3>S patient as bedridden, totally dependent in ADLs and incontinent. After one year of persistent daily rehabilitation (inpatient, outpatient and home combined) he is managing to walk with a platform walker, can feed himself and is continent. Cognitive and communicative abilities can vary largely but with better mobility and larger interaction with the environment, the skills are expected to improve as well. It will be positive to achieve something more than that, but not really expected as a common occurrence during the first year with such severe impairment.

The next step and further long-term goal for the patient will be to achieve the ability to walk with a rolator. This is possible if the patient improves to M<4<M/S>2>S, spastic tetraparesis moderate on one side and light on the other, as described under paragraph D.

C) Patient with Moderate Symmetrical Spastic Tetraplegia M>3/S<3 The occurrence of this type of impairment is less common in its pure form, but is seen more often when combined with ataxia, impaired coordination, balance, and various dystonic movement patterns. Patient with this type of impairment will most likely be ambulatory, either in a wheelchair or able to walk with some support if there are no flexion contractures of lower limbs.

Treatment of new cases at younger ages will provide a rewarding experience. They may recover to full independence in mobility and ADLs, except for cases combined with severe cognitive impairment.

ROLATOR WALKER STAGE: The main goal for such patients will be to achieve the ability to walk with a Rolator for longer distances and outdoors.

This will be the primary activity for patients for most of the time during the following months with hundreds of hours with thousands and thousands of repetitions of this simple movement pattern â&#x20AC;&#x201C; until they are able to progress to the two elbow crutches stage and walk

72 with an acceptable gait pattern, using only the two elbow crutches. Then the patient should continue to walk in this manner until he is able to walk well without any support.

Never recommend anyone with weakness on both sides of the body to use only a one-sided support device.

Patients will do this anyway, but you should remind them that this is a very bad idea for the long-term. They will develop side asymmetry and twisted posture. They will burn a wrong asymmetrical movement program that cannot be erased easily into their rewired brain network. It can later lead to the development of painful musculoskeletal conditions and joint damage, besides being non-economic and exhaustive.

Why we prefer the Rolator instead of various frame walkers, even those with wheels.

Because it has a seat. When the patient gets tired, he can have a rest and then continue walking. It also has larger wheels, so it is more practical for outdoor walking on rough surfaces. Walking with it is smoother and helps develop a normal alternating gait pattern. This is an advantage compared with frame walkers that require users to rise up, move forward, lower and then follow. Holding and driving a Rolator with the upper extremities is a great antispastic, strengthening and coordination exercise for the upper limbs with extended elbows and stimulates wrists dorsiflexion with its functional hand grasp.

73 We are aware that the Rolator is not as stable as a frame walker. But we want to challenge the patient, making him walk, which means making him dynamic, not stable and static. Younger patients have a lower risk of fractures when falling, so the benefits of using a Rolator largely outweigh all other risks. For older, more frail and geriatric patients, we will accept more stable supportive devices, trading mobility for the lower risk of falls.

TWO AXILLARY OR ELBOW CRUTCHES STAGE:

Gait with two crutches or Rolator is also recommended when the patient is already able to walk without support but with faulty, twisted, or otherwise asymmetrical gait patterns.

Regarding other exercises, feel free to choose whatever you feel is appropriate from strengthening, balance and coordination exercises, including aquatic exercises, if available.

Complex ADLs task oriented and extensor activating patterns are preferred. Task oriented exercises have no better results than other exercises, but are not as senseless, boring and repetitive and so are more likely to be followed by the patient.

74 REGULAR PRAYER PATTERN STAGE: Located in a Muslim country, we focus maximum effort on achieving normal prayer patterns with repeated standing, bowing, prostration and sitting on heels. This is a great exercise/ritual with a doubling of benefits on both the physical and spiritual side. Reciting or reading verses aloud from the Quran is a great exercise for speech and cognition.

As a regular home exercise in the months following discharge, the patient can simply walk to the nearest mosque with his Rolator or crutches, pray, read from the Quran and return home.

If he repeats this activity regularly, several times a day, he will continue to improve up to his maximal possible recovery level. That is achieved after approximately three to five years from the injury.

D) Patient with Spastic Tetraparesis Moderate on One Side and Light on the Other M<4<M/S>2>S This pattern of impairment is more common and, regarding its rehabilitation track, is largely similar to the previous category. It can be seen in a pure form or combined with ataxia, impaired coordination and balance. Patients with this type of impairment are the most likely to be ambulatory, even without support, but their gait pattern may be faulty, slow, or with low endurance and balance. If he is a new case and of a younger age, he might recover to full independence in mobility and ADLs, except for those cases combined with more severe cognitive impairments.

He might be able to progress faster than the previous category of patients, to the Rolator walker stage or start directly with the two elbow crutches stage and also quickly achieve the normal prayer pattern stage and have some fun in aquatic therapy if available.

75 That will form the basis of his long- term home exercise program, along with cognitive and speech training. Regarding other exercises, again, you may choose whatever you like from strengthening, balance and coordination, aquatic, task oriented and extensor activating motoric patterns. That will be a simple, easy and enjoyable rehabilitation course.

On the other hand, there are patients with multiple trauma or complications during ICU course that can have their neurological impairments from the TBI, complicated and combined with spinal cord injury, peripheral nerve injuries, plexopathies, and neuropathies. In these cases the prognosis and clinical rehabilitation course might be modified from previous scenarios, with additional limits on possible recovery.

The neurological evaluation of patients in a coma is sometimes difficult or impossible and not everybody had spinal MRI or EMG during his acute management. Reports might be missing and a patient with memory impairment is often unable to provide any reliable medical history.

Some patients are unlucky enough to have quadriparesis or hemiparetic impairment from the TBI with cognitive impairment, combined with various degrees of paraplegia or quadriplegia from the spinal cord injury, and peripheral nerve injury on top of all of that. For example, brachial plexus injury on the one side, with hemiparetic impairment from the TBI on the other side can be seen occasionally.

Critical care neuropathy with flaccid quadriplegia can be seen after prolonged coma complicated by sepsis. Cognitively impaired TBI patients, combined with SCI can present a real rehabilitation challenge requiring extended treatment times.

E) Quadriparesis with Predominant Impairment of Lower Extremities MLE<3/MUE>3 The occurrence of symmetrical lower limbs paraplegia, especially flaccid that is typical for SCI patients is less common for TBI only patients. If you see such a patient, it will be reasonable to exclude undiagnosed spinal cord injury or lumbar plexopathy besides the TBI. If this is present it will significantly modify the patientâ&#x20AC;&#x2122;s prognosis and limit his recovery.

Patients with some spasticity and weakness of the lower limbs and with only minor impairment of their upper limbs can nevertheless still be a pure case of TBI, especially if they have a history of coma and some cognitive or speech impairment.

76 The main short-term goal for this patient will be to achieve supported static standing with endurance for at least 30 min. Progress will be made from the tilt table to the standing frame and platform walker. If he has spastic contractures of the lower limbs, our primary goal will be to release them. The next step is to achieve the ability to walk with a platform walker with increasing endurance up to 500 m and then progress to the Rolator walker during the next two years following the injury. Patients with TBI only are likely to improve.

As a prognostic borderline for practical walking in the future, we see a case six months from the injury with lower limbs strength 3 to 3+ and spasticity Ashworth 2-3. If there is no SCI superimposed, it is probable that he might achieve functional independent walking with a Rolator or even with elbow crutches at the end of a two-year rehabilitation program. If there is any SCI grade ASIA C/D superimposed, the patient will cease to improve and will reach a plateau more quickly. It might be possible to achieve short, supported walking, but with insufficient speed and endurance to manage daily life without a wheelchair.

F) Quadriparesis with Predominantly Impaired Upper Extremities The occurrence of this type of impairment is not common, but can be seen from time to time.

It is difficult to make a generalization from the few cases we have treated. For our patients the course of rehabilitation was plausible.

They were admitted with lower limb strength around 3+ and larger, with spasticity Ashworth 1- 2. Upper limb strength was 2+ to 3 and spasticity Ashworth 2-3 with flexion contractures of hands and elbows. They soon achieved an ability to walk with a platform walker.

Then with Botox injections and physiotherapy, the spasticity of their upper limbs was released to a level that they could hold on to the Rolator and walk for a long distance. In some cases, one upper limb recovered better than the other and achieved sufficient function for modified ADLs independence. In two cases both upper limbs recovered functionally well and patients were fully independent.

Perhaps it is possible to say that there is some positive correlation between the ability to walk and motoric recovery of diparetic upper limbs. This, on the other hand, is not always the case for hemiparetic impairments.

77 G) Spastic or Flaccid Hemiplegia Severe on One Side M5/S0 â&#x20AC;&#x201C; M<3/S>0-3 Often the clinical picture of a CVA is less common for TBI. The prognosis will be different as well. Our patients are mostly younger and have better recovery potential, especially for lower limb strength. Upper limb motoric recovery might be limited nevertheless, depending on the severity of impairment. We generally expect the patient to regain an ability to walk with some support, but independently at least for short household distances at the end of two-year rehabilitation programs, if no contractures are present on the lower limbs. For community ambulation, they might still need an electric or hemi-wheelchair (one arm drive wheelchair).

We can achieve this goal, beginning with static standing, progressing through dynamic standing to short gait with a platform walker using a knee brace and AFO with sports shoes to support the weak lower limb. Some patients may stop here and continue with only wheelchair mobility, but most of our patients will progress to gait with a platform walker for up to 500 m, as their lower limbs can gradually regain some strength, which is not always the case for strokes. We have seen gains of up to two muscle power grades, e.g. from 1 to 3 or from 2 to 4 and, with this level, the patient may be able to walk with one elbow crutch for household distances and even outside.

78 Upper limb recovery is not that good, but generally somehow better than for CVA, if not limited by spasticity. It is possible to see the patient six months from the brain injury with an initial UE strength around 1 to 2 to improve over next year by one grade to 3, if severe spasticity does not develop, or can be managed. Sadly, this is not always the case and many patients end up with spastic non-functional hands, especially if hand extensor strength is below 2 and flexor spasticity above 2 at the beginning.

At the end of the two-year rehabilitation program, the patient is expected to be walking with one elbow crutch for a shorter distance, using a wheelchair for community ambulation, being modified independent in ADLs, continent and able to communicate with some electronic device if he remains aphasic. Exceptions might include patients with severe cognitive impairment, poor cooperation, higher age or limited family support and adherence to exercises.

Permanent loss of one hand function is likely for patients who developed severe spasticity with no significant recovery of strength during the first year after their injury. Maintenance splinting of the spastic hand is recommended, even though rarely used by the patient later on in their life. The ability to carry on everyday life with one hand goes surprisingly well with our patients if they have no great cognitive impairment. Many of them are independent with ADLs and driving a car â&#x20AC;&#x201C; with (or sometimes even without) automatic transmissions.

H) Spastic Hemiparesis Light to Moderate M5/S0 â&#x20AC;&#x201C; M>3/S<3 The occurrence of this type of impairment is common with one side almost unaffected and the other side showing light to moderate impairment. There is, again, some difference between hemiparetic TBI, compared to hemiparetic patients following strokes. For CVA the upper limb is frequently the more impaired.

In TBI hemiparesis you more often see a similar degree of impairment on the upper and lower limbs. There was no significant difference in occurrence between the right and left side hemiparesis. Loss of motoric function on the hand of the dominant side is perceived as more serious and training of ADLs with the non-dominant hand requires more time, especially for cognitively impaired patients.

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Again, the main short-term goal is walking. And again we will prefer walking with a Rolator than with any unilateral supportive device, or gait without support. We will encourage the patient to use a Rolator for all walking during first two years if he cannot progress sooner to walking with bilateral elbow crutches.

A hemiparetic TBI patient, walking with a rolator, is forced to keep his weaker and spastic hand extended, stimulated and occupied by holding and driving the rolator. His gait pattern becomes more symmetrical and walking distances longer because he can have some rest on the Rolator seat. It is possible, that a hemiparetic gait pattern with one elbow crutch or even unsupported gait is easier for some patients, but it should not be recommended for TBIs. Young people after TBI have a significant chance to regain at least some function on the hemiparetic side during the two years following the injury, if stimulated properly.

If they develop a hemiparetic gait pattern instead, it will be difficult to change it later. If, after two years, the hand remains spastic and with no useful function, despite persistent rehabilitation exercises, we may allow walking with the unilateral supportive device, preferably an elbow crutch or single cane.

Never use a quad cane for younger people. This device is incredibly clumsy, gives insufficient support and only the illusion of patient stability related to the stability of the cane itself. But walking is inherently unstable and the support must be dynamic as well.

I) Patient with Symmetric Flaccid Quadriparesis M<3/S>1 The occurrence of this type of impairment is less common for TBI patients, where spasticity is a standard part of the clinical picture. Exceptions are patients in persistent vegetative or

80 minimally responsive states. If the patient is conscious, cooperative and still has weakness of all limbs, with no spasticity, we must consider the possibility of superimposed SCI in the cervical area, or of the critical care neuropathy.

Patients with cervical SCI do not have a good chance for motoric recovery after the first year following injury. Patients with neuropathy have a much better prognosis and may continue to improve even later, depending on peripheral nerve regeneration. In some cases, we failed to find signs of neuropathy or SCI and such quadriplegic purely TBI patients were mostly not improving well.

Patients with this type of impairment on admission will be non-ambulatory, with poor sitting balance. The main short term goal will be to achieve sitting only stage and electric wheelchair control stage and then we hope to see progress to static standing stage and, if possible later on, to short gait with a platform walker.

For patients without a critical care neuropathy or with a SCI, that might be the maximum recovery level, if no further progress is seen after one year of rehabilitation. Patients with neuropathy can continue to improve and if they regain the strength of lower limbs better than 3, will be able to walk with a platform walker. With further recovery of lower limbs strength, they can progress to the Rolator during the next two years. Recovery of ADLs abilities will depend on UE strength, coordination, and patientsâ&#x20AC;&#x2122; cognition.

J) Predominantly Ataxia and Balance Impairment M>3/S<2 A Patients with this type of impairment form a heterogeneous group, with muscle power being generally better than 3, spasticity less than Ashworth 2 and ataxia being the dominant problem that compromises mobility and ADLs. Sometimes a combination of asymmetric weakness, spasticity, and dystonia may complicate the rehabilitation, yet most of the ataxic patients have good rehabilitation potential, according to our experience. Exceptions are patients where ataxia is severe and combined with weakness or spasticity.

On admission, the patient may be non-ambulatory. Sometimes it is just because he had no appropriate support device for walking. From this group, we had patients who regained the ability to walk with a support after being non-ambulatory for more than 3 years (in one unique

81 case, more than 5 years). It is possible to see the patient rapidly improving functionally in all FIM aspects simply by being given the possibility to walk with a platform or Rolator walker.

But letâ&#x20AC;&#x2122;s begin with a patient who is within the first year since injury. He will be able to sit up and stand with support and sometimes he can take few steps with moderate assistance. He cannot propel a wheelchair and is totally dependent in ADLs because of UE ataxia.

If he does not have contractures, our first short-term goal is to achieve dynamic standing stage and short gait with platform walker stage. Good progress was often seen, with fast improvement of lower limb strength, if caused only by previous inactivity. Walking is the easy part, and progress to the Rolator walker stage is expected once the patient is able to walk with a platform walker for 500 m.

Management of upper limbs ataxia for ADLs training is more challenging. We observed a decrease in upper extremities ataxia when the patient continued walking with a Rolator for some time. Just holding, driving it and walking, with many repetitions. No other special exercises were needed and the gross ataxia decreased, including overall improvement of general mobility.

For regaining more precise coordination of upper limbs, time and persistent exercise is required. This level of adherence to exercise programs when not supervised is virtually impossible to expect from our patients. They have cognitive and sometimes behavioral problems on top of poor concentration and endurance for complicated tasks. The only practical way to achieve improved adherence to repetitive coordination exercises is to make them a regular part of ADLs or entertainment. Handcrafts or playing games can be an important part of a patientâ&#x20AC;&#x2122;s long-term management.

Medication for ataxia is multimodal and requires certain levels of expertise Medications for Ataxia Symptoms 45 To simplify this complicated issue, we used only two drugsâ&#x20AC;&#x201C; Baclofen in doses up to 10 mg tid, sometimes combined with Clonazepam up to 1 mg tid. Reducing ataxia by around 50% with these two drugs helped significantly with exercises. We did not see much additional effect with increases of the dosage or by adding other medications.

82 K) Predominantly Cognitive Impairment with Independent Mobility This type of impairment on admission was exceptional in our case mix. We can only provide general advice based on psychology and psychiatry guidelines. Recommendations for the management of such a patient, if he is restless, will be similar to the confused and agitated patient emerging from a coma as described on page 20.

In the first line of management, we always try to keep the patient calm and cooperative, with a structured psychology approach, avoiding irritating him by unnecessary interventions and minimizing unfamiliar or unexpected situations. The second line is a psychiatric medication if the patient has any kind of disruptive behavior. The patient needs constant supervision and TBI units should be secured against unauthorized entry and exit.

On the other hand, a patient with cognitive impairment and with independent mobility is a usual result of the successful rehabilitation program of moderate to severe TBI cases.

Improvement but not a full recovery of all cognitive functions goes hand in hand with more mobility and social interactions of the patient, who will regain the ability to leave his room and interact with the environment.

Our patients mostly suffered from short-term memory loss, poor attention, concentration, long-term planning problems etcâ&#x20AC;Śbut they remained calm and cooperative. Rarely have we seen any dangerous or antisocial behavior. Slow gradual improvement in cognitive function occurs with time at home, depending on patient ability, the opportunity to interact with surroundings and socialize with other people. For less severe cognitive dysfunctions we recommend the patient attend either school or his previous workplace, if not for active participation then at least as an observer for additional interaction and emotional stimulation.

OCCUPATIONAL THERAPY STAGE: Occupational therapy is the profession that helps people with an impairment to perform activities they are required to do through the therapeutic use of daily activities and occupations. This means that this stage will start as soon as the occupational therapist is available and except for the case of full functional recovery, it may never be finished, meeting whatever new challenges occur in the patientâ&#x20AC;&#x2122;s life.

For rehabilitation of the motor-function of impaired upper limbs, physiotherapy and occupational therapy share the field. Cognitive training and communication are shared between occupational therapy, speech therapy and neuropsychology. Training of various activities for daily living is the main OT area and has many options, depending on the level of impairment, stage of recovery and local environment. It is beyond the scope of this short manual to describe in detail the possible interactions between impaired human beings and various types of environments in different countries and life situations. Occupational therapy literature can be found on: InternationalHandbookOccupationalTherapyInterventions.pdf 46 Most basic ADLs functions such as feeding, toileting, and communication are briefly described in the following chapters. Generally, we will recommend 1 hour of OT program for every 2 hours of PT interventions during the first year following the injury. A balanced 1:1 PT/OT intervention program might be useful later on, in addition to Therapy recreational and Vocational rehabilitation when no further great change in the physical condition can be

83 expected and compensations, assistive devices, and environmental adjustments with social support are more needed.

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85 CHAPTER TEN. VARIA A) Swallowing Regaining of the ability to receive food orally is of major importance in a patientâ&#x20AC;&#x2122;s functional recovery. It introduces important brain stimulation from well innervated and sensitive orofacial areas. Oral feeding is a vital function with a positive emotional charge, returning the senses of taste and smell to the patient and markedly improving his quality of life. It opens the opportunity for ADLs training with self-feeding for the OT, introducing another important stimulation and activity. Oral feeding is less expensive as well. It might be temporarily more time-consuming for caregivers, but most patients usually regain the ability to feed themselves, thus saving caregiver time for many years to come.

A speech-language pathologist is the health care professional most valuable and effective for swallowing retraining. Only rarely was oral feeding not regained in the younger patients admitted to our unit with NG or PEG tubes. In general, we have seen improvement in the swallowing function going together with such overall mobility improvement as sitting, standing and walking. Upright posture and mobility stimulate head and neck motoric control related to the chewing and swallowing functions. The effectiveness of swallowing reeducation is reflected in ASHA Guidelines 47 Recognizing the right time to restart oral feeding is sometimes a tricky issue. The Modified barium swallow study, if available, is an important tool used to diagnose oral and pharyngeal swallowing dysfunction and risk of possible aspiration. If not available, use of bedside water swallow test can be considered, despite its known limitations 3 Ounce Water Swallow Test 48 If the patient passes the test, it is usually possible to start careful oral intake of small amounts of pureed food, gradually increasing intake, if well tolerated. If the patient fails this simple test, there are other instruments available to achieve better precision for Dysphagia Screening 49 We must be careful, but also have to understand, that there are no zero risk procedures anywhere. Accidental choking is the fifth most common cause of death for healthy people outside of the hospital, being more frequent than drowning. Explaining the difference between the risk of unfortunate coincidence (if it happens inside a hospital) and the causality of any event, might be a challenge, but is part of our work.

The existence of silent aspiration bringing possible airway and lung damage from chronic inflammation is another question to mention. First of all, it should be clear that NG or PEG tube feeding does not prevent the most dangerous form of aspiration of regurgitated gastric content and is not decreasing the risk of aspiration pneumonia. Silent aspiration actually occurs in almost half of healthy people during deep sleep aspiration in normal adults 50 A certain amount of aspiration may be tolerated without complications provided lung clearance is normal and protective mechanisms are intact as is expected for younger adults. Older patients on nasogastric tube feeding did not have a better outcome against aspiration pneumonia and mortality when compared to those who were on oral feeding as per study on https://www.ncbi.nlm.nih.gov/pubmed/16228094 51 In our practice, we saw no significant radiological signs of chronic lung damage of our TBI patients with silent aspiration on routine chest X-rays repeated over many years. The clinical decision concerning restarting oral feeding must always be a team, family and (if possible) patient decision. Try to imagine yourself living with NG or PEG tube for 30 years. What would be your choice?

86 B) Communication Effective speech once lost was rarely recovered later than one year from the injury in our patient's group. We could not find any clear treatment efficacy summary for aphasia and no numbers are available in ASHA 52 even for dysarthria to compare with more advanced therapy environments.

Considering the limited availability of speech-language practitioners and limited therapy time for our patients, we cannot give a clear opinion on this issue. Maybe with sufficient therapy time and regular daily interventions, results would be better for younger patients, but it is not clear, if they would be significant. A full review of the cognitive communication disorders and their treatments post-moderate to severe ABI can be found on Module 7 ABIEBR cognitive-communication-deficits 53 With limited SLP resources our recommendation for dysartrhia with mainly motoric components that can be trained, is: under the supervision of another person, read aloud regularly, count loudly, recite nursery rhymes aloud and sing rhythmical nursery songs from your particular culture. There is a chance, that these old memory engrams that are burned deeply in the neuronal network can be used to revive basic speech function circuits.

Slowly reciting verses from the Quran that the patient memorized prior to the injury might be helpful, as well during regular prayers for similar reasons for Muslims, and any previously many-times repeated prayers can be used for any believers.

For different types of chronic aphasia with a predominantly cognitive component of the communication disorder, augmentative and alternative communication with electronic devices seems to be increasingly available for an affordable price.

C) Bowel and Bladder Control Retraining by Timed Toileting Regaining patientâ&#x20AC;&#x2122;s sphincter control is a most important goal for caregivers. Sometimes it is this factor that makes all the difference between the willingness of caregivers to take the patient home or to leave him in a residential nursing facility. For most TBI patients, incontinence is related to their cognitive impairment. Good chance to regain continence for

87 younger patients comes with overall mobility and cognition improvement with rehabilitation during first two years after their injury.

The recommendation is simple – keep the patient’s bowel and bladder empty in a controlled way. Train him in regular voluntary controlled emptying under your personal help and control. Basically, it is a kind of big infant potty training, but it lasts longer and is more difficult. So do it persistently and be patient. We agree with the advice given on braininjuryselfrehabilitation 54 “This takes much dedication by the caregiver or the patient”.

We will perhaps not recommend waking the patient at nights for voiding and prefer a diaper for night use instead. Disrupting sleep is not a good idea for TBI patients. Voiding intervals can be longer than 2 hours. Three or even four hours will do just fine, depending on fluid intake, the patient’s bladder capacity and condition of the reflex arcs. Nothing gives better feedback than your own observation and practice. If the patient does not regain continence, assistive continence products are available https://www.continenceproductadvisor.org/advice 55 Clean intermittent catheterization for male TBI patients is rarely a good option due to motoric and cognitive impairment and intact body sensations, making this procedure uncomfortable.

D) Seizure Management, Posttraumatic Hydrocephalus, Parkinsonism, Depression, Apathy and Hormonal Disorders.

Approximately 5-7% of TBI patients experience a posttraumatic seizure (PTS). Seizure prophylaxis with medication is recommended only for early post-traumatic seizures and only during the first week after the injury Use of antiepileptics for seizure prophylaxis after traumatic brain injury 56 Early PTS, if they occur, are linked to high incidence of late PTS and chronic epilepsy. The appropriate duration of treatment is not well established.

Individuals who have experienced seizure activity can reasonably be treated with anticonvulsants for 6-12 months, after which re-evaluation is necessary Closed Head Injury Medication Anticonvulsants 57 The occurrence of late onset seizures cannot be prevented by any prophylaxis with anticonvulsants and there is no justification to use them considering their persistent sedative side effects. Full guideline for seizure prophylaxis is available on Seizure prophylaxis in TBI.pdf 58 In our practice, we observed irrational long term use of anti-epileptic medication for patients with no clear history of early seizures. Sometimes patient’s motoric activity, mood and cognitive functions improved remarkably just by decreasing the dose or tapering off unnecessary anticonvulsants. But it is not always easy and some courage and authority are needed to do that. Late onset seizures can happen at any time. If by chance they occur after you stopped the medication that the patient was taking for a long time, you will be blamed and scientific evidence from the literature will not be understood.

The same circumstances will take place if seizures occur after you start some new medication or exercises. The difference between causality and coincidence is not always clear and even high education does not protect people from magical thinking. Some may even believe that the occurrence of a seizure is a good sign of brain reconnection and more electrical activity.

Actually, who knows for sure? In any case, if a seizure occurs, medication will be restarted immediately, with scientifically clear justification.

88 In our clinical practice, we have never seen any deterioration of patientâ&#x20AC;&#x2122;s functional condition after occasional, short, episodic late-onset seizure. We actually did not see any, intractable seizures leading to a deterioration of patient condition. Rarely did we have to treat grand mal seizures coinciding with exercises. But we have seen patients barely responsive with three anticonvulsants given a long time after their original early PTS subsided. Consultation with an experienced neurologist, if available, can help to solve this dilemma.

Post-traumatic hydrocephalus is a common complication that was mainly diagnosed during an earlier stage of TBI management in our group of patients. Around 3% of our patients were admitted either with a VP shunt or with a history of VP shunting with later shunt removal.

If the neurological condition of the patient is deteriorating during rehabilitation and even when he is not improving as expected, we must consider this possibility and order a brain CT. If the patient has a VP shunt already, we need to rule out VP shunt malfunction.

Neurosurgical consultation is helpful in that case.

In our practice, we discovered a non-diagnosed chronic hydrocephalus, where neurosurgical intervention came unto consideration only exceptionally and none of our patients developed progressive hydrocephalus with deterioration in their functional condition.

Post-traumatic Parkinsonism or extra-pyramidal symptoms after TBI are not well documented in the literature, but we have seen perhaps 1% of our patients exhibiting various Parkinson-like problems and sometimes responding well to Sinemet and/or Amantadine.

Poor initiation of movement has also been seen commonly in the case of depressive disorder or Apathy after TBI. A psychiatrist, if available, can be helpful.

Hormonal problems can result from dysfunction of the hypothalamic and pituitary neuroendocrine circuits. Two reportedly common, hormonal complications of TBI that are a syndrome of inappropriate secretion of antidiuretic hormone and hypo-thyroidism, were not seen in our patient groups. We have seen two cases of hyperprolactinemia with mild clinical gynecomastia.

E) Cortical Blindness This most unfortunate condition could be found occasionally amongst our patients, along with the more common partial visual field loss or neglect. Rehabilitation, if possible for often cognitively impaired patients, will be a big challenge. For younger patients, guidance can be found in the work Rehabilitation of cortical visual impairment in children 59 F) Surgery of Contractures and Heterotopic Ossifications Our experience with sometimes surprisingly good results of the conservative management of soft tissues spastic contractures, leads us to the recommendation not to do any contractures surgery during the first year after the injury. Even during a second year after the injury we often achieved a good release of spastic contractures of lower limbs with conservative therapy. This cannot be said about contractures of the upper limbs. When there is no recovery of active UE movement after one year, contractures tend to become stationary and sometimes even worse, despite recommended splinting but surgery can only rarely improve this outcome.

We have good experience with surgery of contractures of the ankle, where gait improved remarkably after the release of the plantar flexion. We do not have much practical experience

89 with surgery of other chronic contractures. An interesting article about it can be found on Minervamedica Surgery.pdf 60 G) Botox injections We were fortunate enough to have the possibility to use Botox injections on large scale for spasticity management of our patients. We hope that the cost of this therapy will drop significantly soon enough that it will become available on a large scale worldwide as well.

Detailed guidelines can be found on UK Botox guidelines 61 In our clinical practice, very good results were seen for the treatment of moderate spasticity Ashworth 2 to 3 of upper limbs flexors with preserved strength of extensors at least 2+ if injections were followed by splinting and intensive exercises for at least three weeks. Good results were achieved for spastic plantar flexion contractures of ankles if the patient was able to walk afterward.

Less conclusive were our attempts to manage flexion contractures of the knees, by injecting spastic knee flexors. The volume of these muscles is significantly larger than for previous muscle groups, and it seems that a maximal allowed dose of 600 units injected to one lower limb only is needed to see some clinically and functionally relevant release.

No lasting functional results were seen for spastic flexion contractures of upper limbs, later than two years from the injury, with no extensor strength left. The patient could nevertheless benefit from it, if elbow and hand contracture release allowed him to passively grasp a handle of the platform or Rolator walker. This could help facilitate gait training for the necessary time, resulting in a patientâ&#x20AC;&#x2122;s later ability to walk with one crutch only, or unsupported.

Repeated reinjections of chronic contractures especially on upper limbs, later on, with no clear functional goal in sight, seem to be difficult to justify economically and a selective peripheral neurotomy 62 might be a better option.

Intrathecal Baclofen pump implantation as a therapy option does not fit our limited resources healthcare framework, being still extremely expensive. From five cases seen, only one was of great clinical success. The patient was having severe bilateral knee flexion contractures when admitted two months after his TBI. After six months of unsuccessful physiotherapy, Baclofen pump implantation was done and with further rehabilitation, he achieved not only full release of his lower limbs, but his strength remained good enough to walk without support later on. Having no control group, one cannot be sure what part of it was thanks to the Baclofen pump, because similar releases of lower limb contractures within the first year was sometimes also seen with oral Baclofen only. His pump expired after seven years and his mobility did not deteriorate so it was removed.

Rigorous scientific research in rehabilitation medicine is difficult. We still do not have an easily available objective and precise enough instrumental measurement methods of human body motoric functions. We are working with a heterogeneous case-mix of patients and a definition of what is a norm for certain group remains vague.

Sometimes it is technically impossible or ethically inadmissible to use placebo therapy mimicking active physical interventions. Finally, there are many studies about methods promising profit from the sale of expensive equipment, or medicaments, but simple and inexpensive therapy methods are less often studied.

90 H) Home Exercise Programs and Caregiver Education Family involvement in a long-term TBI rehabilitation programs is essential, especially in cases of severe impairment, with long-term plans combining admissions and home exercises.

If the family was able to carry on regular home exercises, the improvement of patient condition was seen as a rule upon readmission. If the patient remained passive, with low stimulation at home, deterioration of his functional condition sometimes occurred and upon readmission we were forced to restart again from a lower functional level, wasting important time for recovery.

Families in Saudi Arabia are still large and live together in one place or home, with some of the family members sharing the task of a caregiver. In that case, it was difficult to expect a consistent and effective continuation of the exercises at home. Nursing care was done very well, but home exercise programs and care for impaired persons is a demanding full-time task. Exercises and stimulation alone can take around 5 hours daily if you want them to be effective. Doing ADLs with the impaired person is time-consuming as well, so 8 hours of daily caregiver work will be needed most of the time during the first year.

We preferred if the family could hire a full-time professional caregiver from outside at least for the first year after the injury. A significant amount of work is still left to family members because even a professional caregiver will need his own rest from this exhausting work.

Patience, kindness, strength and common sense are needed more than any special education because the tasks required are simple and repetitive. Optimally, we were able to educate a caregiver during admission of the patient. Family or community investment to the caregiver salary will be generously reimbursed by future lower expenses for the care of the impaired family member and by improved patient functionality and life quality, which is invaluable.

Patients, in general, should continue with exercises at home on the same level as at the time of discharge. Many hours of daily simple interaction with at least one another person are more valuable than any kind of short, specialized interventions.

If the patient is able to sit only â&#x20AC;&#x201C; he should continue daily sitting in the armchair as tolerated up to 3 hours on the morning and 4 hours on the afternoon, with 2 hours bed-rest after lunch.

Table top activities, cognitive stimulation, and training in self-feeding can be carried out if possible.

If the patient is able to stand with a standing frame and the family can acquire a standing frame, he is supposed to continue with static standing training, three times daily for 30-45 minutes of standing, with sitting and training of electrical wheelchair control in between, and with table top activities, cognitive stimulation and training of self-feeding. Again, 2 hours bed-rest after lunch is needed.

If the patient is able to walk with a platform walker, he should continue gait training five times daily for 30 min with sitting in between and table top activities, cognitive stimulation, and training of self-feeding with 2 hours bed-rest after lunch.

Intensive home exercises are especially important during the first year after discharge of the patient from our initial inpatient program. If continuing improvement is seen, they will continue during the second year as well. Later on the role of the caregiver and of home exercises is shifting to only maintenance of achieved functional levels, especially if the

91 patient remains caregiver-dependent. Living with impairment is a continuous challenge and no healthy person is really an expert in it. Help of other impaired people who are living successfully with impairment meeting in a SUPPORT GROUP might be invaluable.

I) Exceptions If the Pareto 80/20 principle applies, we should be satisfied if 80% of our TBI cases fit the above described groups and recommendations. I hope that it exceeds that, but clear exceptions were occasionally seen and some of them are described below.

Patient MRN 92593 The patient is a 30 years old man who was injured by blast in October 2016 and initially admitted to xy hospital, in coma. He was intubated and ventilated. Brain CT showed shrapnel in the left frontal lobe, bone fragments in the right frontal lobe and frontal contusions bilaterally. He had massive lacerated wound on the posterior aspect of the right leg with soft tissue loss and X rays showed compound tibial fracture. He underwent debridement of the right frontoparietal wound and application of the external fixator to the right leg. Then he was transferred to SFH in Riyadh via Medevac. Brain CT follow up showed comminuted frontal skull fractures and brain edema. Patient underwent bilateral decompressive craniectomy, right frontal lobectomy with removal of foreign body. Next he was managed on the ICU, ventilated with tracheostomy. In November he underwent debridement and skin grafting on the right upper and lower limb. Cranioplasty with autologous and Medpor graft was done in December.

Later on osteomyelitic bone flap was removed and patient has massive frontal head defect.

External fixator from the right leg was removed in April and ORIF was done. Patient remains with severe spastic triparesis, incontinent, immobile and totally dependent.

FUNCTIONAL STATUS: Patient is alert and can follow simple commands consistently. He can say few words appropriate to context. Has massive skull defect with both frontal bones and parts of parietal skull missing. Bedridden with flexion contractures of both lower limbs and left UE, unable to sit up. Has spastic quadriplegia with relatively spared right UE where functional mobility is preserved with strength 3+ and spasticity Ashwort 2. Left UE is with strength 3- and spasticity Ashwort 3, both lower limbs with strength 3- and spasticity Ashwort 3. Patient is incontinent. On oral feeding with no chocking reported.

92

The patient is an example of a survival to the extreme injury and a real challenge for rehabilitation and lifelong care as discussed in the introduction of this book.

Patient MRN 40297 The patient is a 27 year old man who suffered traumatic brain injury in a car accident in June of 2009. He was in a coma for three months, managed conservatively, ventilated with a tracheostomy that was closed in May of 2010.

From August of 2010 he was treated under rehabilitation in another facility for five months and then admitted in SBAHC to continue his rehabilitation program. He remained aphasic, aphonic with tracheal stenosis and with spastic quadriparesis, ataxia, bedridden and totally dependent. First admission in SBAHC was from 14.5 until 12.9.2011. He was admitted as non-ambulatory and achieved the ability to walk for 500 m with a platform walker with minimal assistance. No changes in speech, he communicated using his handset.

At home he deteriorated in mobility due to an insufficient home exercise program. For the second time the patient was treated from 26.12.2011 until 24.1.2012. He again achieved the ability to walk with a platform walker for a sufficient distance of around 500 m with his

93 caregiver and was tested with a rolator. He could walk with a Rolator with moderate assistance but still with impaired balance. His main limitation for ADLs and wheelchair mobility remained ataxia of UE. The patient was then admitted in January and October 2013 for reiteration of exercises focused on gait training endurance and ADLs and SLP program for alternative communication.

During the SLP program, he unexpectedly regained some ability to talk after being aphonic for three years. He improved in gait as well and began to be able to use a Rolator instead of the platform walker and walk with it for around 300 m. He was modified independent in ADLs. As per SLP Impression: The patient has severe dysarthria. The patient can express himself verbally using words and sometimes phrases and sentences from two to three words.

However, speech clarity and intelligibility is severely affected.

His next admission was in May, 2014 and despite the long time passed since the accident, the patient continued to show some improvement and was able to ascend/descend 2-3 flights of stairs with set-up supervision. He was talking with single words and better clarity. His next admission was in May, 2015 and he was walking independently with a Rolator for long distances and outdoors. He could express himself verbally but with weakness in speech production and slurred speech.

His last admission was in November, 2016 to test his ability to walk with elbow crutches, but his balance was not good enough and he was recommended to continue using the Rolator for safety reasons. He was nevertheless walking without support for household distances. He spoke with single words and used a smartphone as an AAC, writing messages well even in English. A VR and psychology review was done for his possible occupation at home and to improve computer literacy.

This patient regained his ability to walk after being non ambulatory for two years and recovered some speech after being aphonic for three years. Why? Probably, because he was predominantly a victim of ataxia, with mild spasticity and with muscle strength on admission around 3, due to a combined weakness from the TBI and two

94 years of inactivity. He recovered rapidly with exercises and ataxia improved with five years of persistent walking with a Rolator. Regarding speech, the possible explanation is that his aphonia was caused by tracheal stenosis besides brain damage and that more physical activity could improve breathing, leading to the recovery of phonation.

Patient MRN 71007 The patient is a 24 year old man who suffered traumatic brain injury in a motorcycle accident in 2010. A brain CT showed right maxillary bone fracture, small hemorrhagic contusion in the right front-basal region and bilateral contusions in basal ganglia. He was managed conservatively, ventilated with tracheostomy and remained unconscious for almost ten months according to his fatherâ&#x20AC;&#x2122;s report. He was discharged from the hospital after two years and since then lived at home.

He recovered well cognitively but remains non ambulatory, incontinent and has severe spastic contractures of upper limbs. Rehabilitation in SBAHC began in February, 2017. On admission he was oriented and cooperative, speech was with dysarthria in simple short sentences. He could sit up with minimal and stand up with moderate to maximal assistance. He cannot walk.

He has quadriparesis more on UE and on the right side. Strength is 3- for the right UE with spasticity Ashwort 3-4 and elbow, wrist and hand flexion contracture with no grasp. Strength is 3+ for the left UE with spasticity Ashwort 2-3 and partial hand grasp is preserved. Right LE is with strength 3 and left LE is 4, with spasticity Ashwort 2. Patient is incontinent, on oral feeding with no swallowing impairment.

After two months of intensive inpatient rehabilitation, patient is walking with a platform walker with good endurance for around 500 m with supervision only. Significant release of the left hand contracture and good improvement of the right hand is seen after Botox 300 unit injections to each side. Timed toileting program is ongoing.

95

We do not expect to see anyone regaining the ability to walk again after more than six years from the TBI. In this case it may yet happen and we are working on it. It is possible that the patient might well have achieved it some time ago with systematic rehabilitation.

Patient MRN 52500 The patient is a 41 year-old man who suffered TBI in a car accident in January, 2012. He was admitted to the hospital in coma with GCS 7. A brain CT showed only small contusion in the left internal capsule and fracture of the left maxilla. His chest CT showed lung contusions. A cervical spine CT showed no displaced fracture of C2. He was managed conservatively and ventilated.

He developed brain edema with worsening of his clinical condition and decerebrate posturing and then became vegetative. Later on in 2012 he was transferred to a long term care hospital for nursing care. During 2014 he became more responsive and regained the ability to follow simple commands. He remained with severe spastic quadriparesis, totally dependent with a PEG tube for feeding. He was transferred for an attempt at rehabilitation and treated in the Prince Sultan Bin Abdulaziz Humanitarian City for the first time from 15.12.2014 until 9.3.2015.

He was admitted as bedridden, non-cooperative, totally dependent, incontinent and on PEG tube feeding for three years. The patientâ&#x20AC;&#x2122;s participation in exercises was poor, but improved with medication and at the end of stay he was able to tolerate standing with a standing frame and even walk for around 20 m with a platform walker and assistance. No progress on oral feeding was seen, the patient was not cooperating on SLP program and refused oral food. He had severe bruxism as well.

After discharge, his medication was discontinued and he became bedridden again. For the second time the patient was treated in SBAHC from 9.6 until 6.7.2015. He was significantly better than during the first admission and improved further during that stay. Upon discharge he could walk with an Arjo walker for around 100 m with assistance and started with oral feeding. He had no initiation of movements and remained totally dependent in ADLs but improved visibly with antiparkinsonic medication.

At home all medication has been discontinued again and the patient had only limited exercises but did not deteriorate that much. He was more alert and had better cooperation on simple tasks. Readmitted to resume gait training from 24.11 until 21.12.2015, the patient achieved amazing overall improvement considering his condition on the first admission three years after the injury. He continued to improve and, upon discharge, could walk with a platform walker for around 500 m with assistance. He restarted on oral feeding, still had poor cognition

96 and uncontrolled teeth grinding. His own motoric initiative was limited due to Parkinsonism and cognitive impairment.

Readmitted for the fourth time from 11.7 until 18.8.2016 for resumption of gait training and SLP program to regain oral feeding, he was doing well, continued with gait PW training and could walk for 500 m with a platform walker again soon after admission. Later on, with an increase in antiparkinsonic medication and after tapering off Depakine, he improved beyond expectations and was able to walk with only a Rolator for 500 m with supervision. He became more responsive socially, smiling and with no teeth grinding. Still poor own initiation of movements. Oral feeding was restarted gradually with soft food keeping PEG for fluids only.

Last admission is in April 2017.

Patient is now able to walk even without support, but still has PEG tube even though not using it for feeding anymore.

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CONCLUSION. Telling the truth (or at least some reasonable approximation of truth).

The reality of the human life experience includes not only pleasure and happiness but also pain and sorrow. In Healthcare we more often face that unpleasant part. From time immemorial various types of healthcare professionals remained close to human suffering and death. Various spiritual systems of beliefs, cultural practices and rituals were always involved, trying to bring sense into difficult and sometimes seemingly desperate life situations.

Effective treatment for the vast majority of ailments was unknown. History of medicine 63 Despite major progress in medical science and technology, in rehabilitation we often face a situation similar to that of our ancient predecessors. We often do not have effective cures to restore people to full health and function. Patients with spinal cord injuries remain paraplegic; those with stroke, hemiplegic, children with cerebral palsy grow up impaired.

Most of the conditions that can be improved will sooner or later reach therapy plateaus and then we have to stop the ineffective therapy because our limited resources must be reasonably allocated elsewhere. We will still provide support and offer help, assistance and compassion, but that is a different task.

97 It is in human nature to avoid unpleasant experiences. Giving bad news to someone is one of them. Avoiding bad news is another. So the usual situation is a healthcare professional who does not want to tell and a patient or his family who do not want to hear. Maybe we should call it a denial contract. It can actually work for a surprisingly long time and it is a major source of irrational waste of therapy time and resources.

From our side, getting paid for useless therapy interventions is highly unethical. We have nevertheless to remember that everybody, including ourselves, has some hidden darker side.

Self-deception, masked by excuses about hope and more time needed, is pretty easy.

Sometimes we are just too tired and burned out to argue with unrealistic patients or family members.

From the side of the family, money used for ineffective therapy can always be used more purposefully, for better equipment, home adjustment, paying the necessary caregiver and, finally, for the entertainment of the patient. If you cannot make him healthy, you can try at least to make him happy. And finally, there is always hope, but if a miracle is expected to happen, it does not need our medical intervention.

Not only is this silent denial contract a waste of material resources, but also of a psychic energy. In most instances the truth is already known by everybody involved, just not accepted. Playing various psychological games to hide it and build and maintain a fantasy world, where things are not like they really are, is costly. This psychic energy could be better used for adaptation to the impairment and for psychological transformation, both of which will bring spiritual health, peace and even happiness to the soul of the impaired body.

According to our experience, for TBI patients, the best strategy is to inform the family members truthfully about possible outcomes and expected residual impairment soon after the admission of the patient to our program. A family conference with a therapy team is definitely good use of time spent and is often very helpful. It is emotionally easier for a group to convey inconvenient news.

You can find more details about this topic in Brain Injury Medicine: Principle and Practice chapter 14 Prognosis After Severe TBI 64 Informing the TBI patient himself is another story. Either he will not get it, often being cognitively impaired, or he will not process it well, being emotionally unstable. It is better to focus his attention and effort on exercises during his recovery, giving him realistic goals that can be achieved by small gradual steps. He is expected to carry on regular daily exercises for years to come. We will definitely not discourage him by telling him too soon that, even with this effort, he may not recover fully.

When the time comes to discontinue our interventions, the patient is instructed to continue with exercises and whatever activity is practically possible with his level of impairment and within his environment. There is some hope for further improvement up to five years from the injury. We have sometimes seen surprising continuing improvement, if our patients really chose to follow the regular daily exercises program. This, unfortunately, is not a common occurrence.

Finally the time will come when no further improvement can be expected and in that case it is our duty to say it gently, but clearly. The patient and his family will benefit from this

98 information that can save them time and money otherwise wasted on inefficient therapy delivered by various charlatans, sometimes masked by pseudo-scientific jargon.

We can hope, in the near future, to get closer to effective management of the most difficult and devastating conditions we face in rehabilitation. Some promises can already be seen…until then:

NOT EVERYBODY CAN BE AN EINSTEIN – BUT EVERYBODY CAN BE HAPPY. ___________________________________________________________________________

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103 Practical, Evidence-Based Approach by Sunil Kothari https://books.google.com.sa/books?id=yplFkKimNcYC&pg=PA169&lpg=PA169&dq=Progn osis+After+Severe+TBI:+A+Practical,+EvidenceBased+Approach+Sunil+Kothari&source=bl&ots=9_rL7p6S0M&sig=uf31eVEaxBjTgEabtwg4mSl804&hl=en&sa=X&ved=0ahUKEwiA1KmwjqzYAhXFyKQKHclzAJ wQ6AEIKDAA#v=onepage&q&f=true COWORKERS AND CONTRIBUTORS: Sadia Misbach, OT South Africa Abdulaziz Al Hraibat, SLP Jordan Muna Bakhet, Psychologist Saudi Arabia Martin Muriuki, OT Kenya Daniel Ruhiu Chege, OT Kenya Rozliza Mudarshah, PT Malaysia Sze Ling Chai, PT Malaysia Mohammed Saleh, SLP Jordan Dr.Mohammed Si Larbi Physiatrist Algeria Dr. Ahmad Al Ani, Quality Management Saudi Arabia Salvacion Reyes, PT Philippines Yasser N. Nasser, PT Jordan Abdulmunam Al Dossari, Case Manager Saudi Arabia Ruth Makgetla, OT South Africa Dakeel Abdulrahman Al Judaie, PT Saudi Arabia

Noridah Bidin, Nurse Malaysia Ahmed Al Hefdi, PT Saudi Arabia Saleh Abdullah Al Mohaimeed, Case Manager Saudi Arabia Wilma Casil Ingalla, Nurse Philippines Martin Mital, PT Slovak Republic Mariane Magsumbo,l PT Philippines Faisal Sangido, OT Malaysia Dr. Eman Hussain Ismail, Psychologist Saudi Arabia Nuha Mamdou Saleh, PT Saudi Arabia Mohammed Hassan Rehab. Manager Kenya Barbora Kalousova, PT Czech Republic Baseem Abu Snineh, PT Jordan Fadi Abdelaziz, OT Jordan Dakhel Al Anazi, Ward Clerk Saudi Arabia