Neurobehavioral Challenges After Brain Injury

(Note:  In this guest blog from Chris Persel, Regional Director of Clinical Services and Director of Behavior Programming for CNS, he explains behavioral changes following brain injury and the value of behavior analysis).

The effects of neurological damage from events like trauma and stroke can be devastating to the individual and those close to them. Brain injury can result in lifelong physical, cognitive, and behavioral changes. The impact of behavior changes can profoundly alter how the injured person functions day to day, even impeding rehabilitative goals and impacting the ability to live independently. Changes in personality and behavior following traumatic brain injury (TBI) often represent the most significant barrier to a successful outcome including reintegration into the community whether for basic daily tasks, work or recreational/social activities.

Common behavior issues following brain injury include behavioral excesses (occurring too much) such as irritability (e.g., poor tolerance, short temper) and aggression (e.g., hitting, grabbing, kicking), property destruction (e.g., striking furniture, throwing items) and inappropriate vocalizations (e.g., cursing, yelling, threats). Also presenting a concern are behavior deficits (do not occur enough) such as compliance with tasks (e.g., cooperation with requests), social skills (e.g., overfamiliar discussions, uncharacteristically rude remarks), initiation (e.g., knowing when to begin tasks) and the academic and return to work skills (e.g., being on time, following directions) to be successful. Some of the most difficult behaviors can be dangerous to the patient and others around them. Treating these dangerous and challenging behaviors, which may include physical aggression toward others, self-injurious behavior, sexual disinhibition, and escape or elopement, requires a treatment commitment across the continuum of care.

In the early, acute stages of recovery from brain injury, many of the behavioral complications demonstrated are considered to be a normal phase of recovery. When these behaviors continue beyond those early phases, however, and form on-going negative patterns of interaction with others, very specialized treatment is required.  These behaviors can be disturbing to families and staff, disruptive to therapy, and jeopardize patient safety. The future quality of life for the patient and their family depends on effective interventions, provided with a great deal of consistency and structure. Behavior analysts (professionals in Applied Behavior Analysis) add value to interdisciplinary rehabilitation teams by helping to develop both skill acquisition and behavior reduction programs throughout the patient’s recovery (i.e., acute, post-acute, long term care). Behavior analysts spend a great deal of time directly observing interactions, determining what may be motivating the difficult behaviors, and what responses may need to be strengthened and reinforced. The behavior analyst must then provide training to all those who may interact with the patient, including most importantly, the family. This skilled, specialized intervention establishes more effective and acceptable response patterns that allow the patient to have their needs met and be better understood without displaying problem behavior. The structured behavior plan can also help the patient develop positive, prosocial responses, and more efficient functional skills.

The effects of brain injury are highly individual, which then challenges the behavior analysts, family and others on the treatment team to continually evaluate the responses, goals, and outcomes throughout recovery (e.g., monitoring response to new medications).

Considering the risk to patients and families, the rising healthcare cost and the possibility of reduced services being available, a focus on efficient and effective interventions such as behavior analysis seems essential to a well-integrated, interdisciplinary rehabilitation treatment team. The quality of life for those affected by brain injury depends on having the opportunity to receive not just the standard rehabilitation one might get following knee surgery but rather specialized, experienced and effective treatment specifically designed to address the unique difficulties they face including difficult behavior.

Does MTBI Contribute to Neurodegenerative Disease?

The estimates for exactly how often MTBI or concussion happens vary widely.  However, concussion is quite common, and the total number of concussions in a year vastly outnumbers all new diagnoses of cancer combined in the U.S.  Many concussions go unrecognized and unreported, making it far more difficult to understand the frequency of concussions.

Generally, it is thought that the brain recovers well after a single concussion.  However, concussions vary by the amount and nature of the forces applied to the brain.  Further, some concussions are referred to today as “complicated concussions” because evidence of damage to the brain is apparent in CT or MRI scans, though the person suffering the concussion seems to recover reasonably well.

It is estimated that between 5% and 20% of individuals who sustain a concussion will have one or more symptoms that last a year or longer.  It is not entirely clear why symptoms persist for some individuals and not for others.

We now know that endocrine dysfunction can be caused by a concussion in some individuals.  We also know that sleep disorders can occur after concussion in some individuals or may be present before the injury.  Both of these factors, along with other general medical conditions, can complicate a person’s recovery.

Several neurodegenerative diseases have been found to occur in greater incidence in association with a single concussion.  These include conditions like Alzheimer’s disease, amyotrophic lateral sclerosis, multiple sclerosis, a variety of endocrine disorders, epilepsy, brain tumor, schizophrenia, depression, psychosis, and dementia.  However, the causal link to concussion as either an initiator of disease or accelerator of the disease has yet to be precisely determined.

Aging and a person’s genetic make-up likely complicate the picture further and can contribute to both onset and acceleration of disease.  We cannot predict accurately who will develop a neurodegenerative disease, though an important indicator can be found in a person’s family history.  That said, we still have no way to guarantee who will and who will not develop such conditions.

The only clear point is that avoiding concussion is well-advised.  Once one or more concussions occur, the individual should consider significant lifestyle modifications, many of which are common sense and advised for many other health conditions.  The person should be alert to developing conditions by working closely with their physician.

These include avoiding the use of caffeine, alcohol, over the counter sleep aids, and recreational drugs.  Diet should be well-balanced, avoiding high carbohydrate intake, and maintaining an appropriate body mass index (weight).  Ideally, the diet should be rich in antioxidants and low fat (~17%).  Daily exercise should be included in one’s routine, just as one includes other daily hygiene care.  Exercise should be under the supervision and advice of a physician and should be 30-60 minutes of cardiovascular exercise at least six days per week.  Sleep should be 7-9 hours daily, and a rigorous sleep routine of regular sleep and wake times should be protected.  A physician should screen annually for endocrine and sleep disorders, in particular, sleep apnea.  And sleep apnea should be managed with breathing support.

Strokes in the Young Adult Population are on the Rise

(Note:  This is a guest blog from Brent E. Masel, M.D, the Executive Vice-President for Medical Affairs for CNS and a Clinical Professor of Neurology at the University of Texas Medical Branch in Galveston. In this article, Dr. Masel addresses the increasing rate of strokes in young people).

 As is well known, stroke is one of the leading causes of disability and death in the United States. We all assume this is a problem of the elderly. For the most part, it is; nevertheless, it is increasingly becoming a significant problem in the younger population.

Interestingly, the incidence of strokes in the US amongst patients older than 65 years has decreased over the past few decades. Population studies, however, have shown an increase in strokes in young adults. Nationally, approximately 11% of strokes occur in young adults.

We are now seeing an increased prevalence of traditional cardiovascular risk factors in adults aged 18 to 64. The prevalence of three or more conventional risk factors such as hypertension, elevated cholesterol, tobacco use, and obesity has nearly doubled in young adults when compared to older populations. Additional “lifestyle diseases” that increase the risk for stroke include substance abuse such as cocaine and possibly cannabis. Cervical artery dissection (tearing of the carotid artery in the neck), usually caused by trauma to the neck is an essential cause of stroke in the young adult population.

Migraine may be a cause of stroke in a large percentage of patients, especially those with well-defined premonitory symptoms. The risk of stroke in women with migraines is especially increased in those who are heavy smokers. Oral contraceptive use has long been known to be a possible cause of stroke in young females, again, with an increased risk with heavy smoking.

It should also be noted that despite a comprehensive evaluation, in a considerable portion of young stroke patients, no clear cause is found.

A stroke in a young adult carries a significant risk for post-stroke complications. A Dutch study showed that the risk of mortality is four times higher in young patients who have strokes compared to those who don’t. Post-stroke depression is common at all ages and is undoubtedly very important in the young. It also may be related to increased mortality in the young adult population. Other factors that may contribute to a poor outcome include post-stroke pain, cognitive deficits, fatigue, and sexual dysfunction.

Children are not immune to strokes. An extensive survey in the United States found an incidence of stroke of .58 per 100,000 children aged 1 to 14 years. The most common causes were blood vessel disease and sickle-cell disease. Approximately 17% of children with sickle cell disease will have a clinically silent stroke as detected by MRI. 10%-15% of children with sickle cell disease will have a stroke by age 20. Sickle cell disease, therefore, is an important potentially preventable cause of stroke in children and young adults.

Interestingly, a chickenpox infection in the preceding year was noted in 31% of children aged 6 months to 10 years who had a stroke compared to a 9% rate in the general population. The risk of chickenpox associated stroke is estimated to be one in 15,000 children.

So what can the reader take away from this blog?

Strokes in the young adult population are on the rise even though it is decreasing and the older adult population. To a great extent, many of the risks of having such an unfortunate event can be modified by lifestyle changes. We encourage the readers of this blog to take inventory of their lifestyle choices and take control of their health.

Sleep Evaluation and Treatment Support Patient Outcome

(Note:  In this guest blog from Grace Griesbach, Ph.D., and CNS’ National Director of Clinical Research, she explains that proper sleep is a vital component in the rehabilitation of brain injury).

Historically, quotes referring to sleep have been associated with well-being. This is not without substance. The importance of sleep is appreciated when one considers that it is observed across the vast majority of animal species. In humans and other higher mammals, lack of sleep has been demonstrated to impact physical, cognitive and emotional functions negatively. Physical consequences of sleep deprivation include compromised immune responses, as well as hormonal and metabolic alterations that in turn will impact overall health. Sleep also promotes emotional and psychological well-being. As for cognitive functions, sleep has been shown to facilitate learning and memory.

Moreover, animal studies have shown that neural plasticity changes allow for better memory to occur during sleep. Sleep driven neural plasticity is also evident during brain development and during times when healing is necessary. Given the multiple functions of sleep, it is evident that sleep-related problems should not be ignored.

Unfortunately, the prevalence of sleep disorders following brain injury is notably higher compared to the general population. Many of those that have endured a traumatic brain injury or stroke have difficulty initiating or maintaining sleep. Daytime sleepiness (hypersomnia) and fatigue are frequently reported complaints that are associated with insomnia. Apnea, a common breathing-related sleep disorder, is frequently observed during the chronic brain injury period. Apnea is defined as breathing cessation for fixed periods during sleep and contributes to arousals throughout the night; promoting fragmented sleep.

Sleep follows a particular overnight pattern consisting of repeated sleep cycles. Each cycle is comprised of one rapid eye movement (REM) stage and three non-REM stages. These stages are defined by different brain activity patterns that have been associated with particular physiological and neural plasticity processes.

Studies focused on proper sleep closely examine brain wave activity and body physiology throughout the various sleep stages. Some stages are particularly important for memory, emotional well-being, and cognitive function, and may be compromised by interrupted sleep. The golden standard of evaluating sleep is with an overnight polysomnography study performed by a certified sleep technologist. The technologist places electrodes on the scalp of the patient to record brain activity. Breathing, heart rate, oxygen levels, and limb movement are also recorded during sleep. Results from these recordings are sent to a board-certified sleep medicine physician, who creates a report on the diagnosis and a treatment plan.

Centre for Neuro Skills (CNS) offers a comprehensive multidisciplinary approach to rehabilitation. This entails addressing key factors that impact recovery such as sleep. CNS has opened sleep laboratories within the residential buildings of our programs in Dallas, Texas and Bakersfield, California. All CNS facilities can arrange for a sleep evaluation at one of the labs, based on a patient’s needs and treatment plan. Sleep evaluations of CNS patients allow for the detection of sleep-related issues that are likely to hinder recovery. CNS sleep facilities also provide research opportunities to deepen understanding of sleep-related issues after brain injury. Findings from these studies will help improve treatment and develop new therapeutic strategies.

Next Steps in Worker’s Compensation for Treating Brain Injury

(Note:  This is part two of a two-part series on issues affecting worker’s compensation, brain injury rehabilitation, and appropriate patient care).

The focus in health care today is often on the high cost of care and ensuring access to care through legislative reform.  Change in recent years has focused largely on preventative care and care for common medical conditions.  However, health care after catastrophic injury, such as brain injury, is vastly more complicated.

Few individuals receive the full measure of treatment after brain injury that we now know will bring them to their ultimate recovery and functional status possible – due to uninformed financial restrictions to accessing care.  We have learned that early treatment is better than late treatment, in part, because we can prevent the development of unnecessary complications.  Expert treatment avoids inappropriate medications and surgeries while promoting and optimizing the neurological recovery of function.

“Patient-centered care” must be combined with the notion that “the dollars follow the patient” to enable this maximized recovery and return to the most meaningful and productive, as well as, the least expensive and least restrictive life after brain injury.  Catastrophic brain injury presents unique challenges in comparison to other health conditions. A brain injury can affect multiple organ systems quite randomly, and it is often said that no two patients are the same.  The tremendous variability requires medical treatment that is both comprehensive and expensive.  Furthermore, the cost of treatment has not and will not be reduced to a pill or a surgery.  So, treatment of brain injury requires a regiment of physicians, allied health professionals, case managers, attorneys, and family members, in addition to combination therapies that may also include surgeries and medications. Simply put, there is no medical condition today that is as complicated as brain injury.

Further, care pathways and endpoints of treatment are evident in most medical conditions. Appendicitis, as an example, is a medical condition that can almost always be treated the same way – but this is less the case for brain injury. Each patient recovers differently depending upon a host of variables that include the injury itself, the person’s educational, vocational and social history, the person’s pre-injury medical status, the person’s genetic factors, other system involvement, the timing of emergency treatment, the etiology of the injury, the expertise of the treatment given, the duration of treatment provided. Factors that affect access to treatment are also variables and may include access to insurance, socioeconomic status, patient and family education, and awareness of advocacy by treaters of appropriate treatment options.

What are the cost savings of a full-time comprehensive postacute rehabilitation program?

When treatment duration is determined by patient progress alone, rather than interference by financial restrictions, the data shows us that many patients seem to reach maximized recovery after injury when exposed to intensive and expert medical rehabilitation.  These patients’ outcomes are stable or improving at extended follow-up 5 to 7 years post-injury. Additionally, the financial benefit to an insurance company or society is tremendous – at an average of $1.5 million per person lifetime. Incredibly, some patients’ recoveries have resulted in more than $7 million in lifetime savings. When the expense of these treatments is contrasted to the financial savings alone, the return on investment is truly immense.

Is access to health insurance vital for TBI recovery?

Health insurance is not yet routinely providing all the treatment one would reasonably prescribe in the first year after injury. This is not to say recovery doesn’t extend beyond this point in time; rather it says that this is the most rapid and easily modifiable recovery period. The solution is found in collaborating with the teams of professionals who work to determine how benefits are applied and medical researchers who are on the hunt for the most productive and efficient treatment.  It is doubtful that recovery from brain injury will ever be reduced to a pill or a surgery.  Recovery will remain dependent upon intensive, expensive and well-executed therapies combined with thoughtful use of appropriate medications and surgeries.

Next Steps in Worker’s Compensation for Treating Brain Injury

(Note:  This is part one of a two-part series on issues affecting worker’s compensation, brain injury rehabilitation, and appropriate patient care).

The ultimate goal for the person with a traumatic brain injury (TBI) who participates in a comprehensive postacute rehabilitation program is to return to a productive life after discharge. Many times that involves returning to work. If the person sustained a brain injury in the workplace, he/she enters into the worker’s compensation continuum of care treatment system and is entitled to certain benefits that aim to reduce medical and living costs.

However, the public health care options available do not offer much in the way of treatment for TBI or stroke patients, as those options provide people with a considerably smaller chance at returning to higher productivity.

A collaborative report from the California Traumatic Brain Injury Advisory Board states, “For those significantly or profoundly impacted by this injury, reintegration into the community is overwhelming due, in part, to limited services and insurance coverage for critical medical and social rehabilitation. Moreover, persons with TBI often need help with community reintegration multiple times and at different junctures, because of the complexity of their injury and changes in their medical condition, living arrangement, or caregiving situation. (2010)” 1

Centre for Neuro Skills (CNS) has a legacy of success in the worker’s compensation industry and has helped thousands of people to return to productive lives. Since our inception in 1980, we’ve focused on community integration through an individualized, goal-oriented approach to therapy.

Postacute TBI rehabilitation that incorporates various therapeutic disciplines, including occupational therapy and vocational rehabilitation, can simulate real-world work environments, assisting people in re-learning skills for independent living. Through neurobehavioral therapy and behavior analysis in postacute care, clinicians can individualize the treatment needs of each person – increasing their participation in rehabilitation and community activities. This enables them to practice skills needed for independent living and provides them with a greater chance of a productive life post rehabilitation.

Can the benefits of postacute rehabilitation continue long-term?

A 2016 research study, led by Grace Griesbach, Ph.D., National Director of Clinical Research for CNS, investigated whether benefits of postacute rehabilitation for TBI are sustained after discharge from a full time comprehensive postacute rehabilitation program.

In the project, moderately to severely injured people with TBI who participated in a full-time comprehensive postacute rehabilitation program were interviewed one year after discharge. “In the analysis of employed and unemployed subjects, it was revealed that 43.75% had an occupation of equal position to that before an injury. Those that were working also showed positive levels for social participation, cognitive function, and social satisfaction,” the paper states. Additional analysis revealed that as many as 66% returned to some form of paid employment.

These findings support the durable outcome and beneficial effects of postacute TBI rehabilitation long-term, it noted, “concluding that individuals with a good rehabilitation outcome are more likely to regain their former occupation and quality of life.” 2

Do these findings also conclude that access to health insurance is vital for TBI recovery? I’ll address that topic in part two of this blog, Next Steps in Worker’s Compensation for Treating Brain Injury, which explores cost savings, reporting, data collection, and public health care options that are currently available.

Sources:

  1. California Traumatic Brain Injury Advisory Board, Advancing California’s Traumatic Brain Injury Service System, Department of Mental Health, May 2010. Accessed at: https://www.dor.ca.gov/TBI/TBI-Docs/Advancing-Californias-TBI-Service-System-Next-Steps-acc.pdf
  2. Charan Singh, Sarah Finley, Sharon Umphress, Craig Persel, Grace S. Griesbach, Outcome After Post-Acute Rehabilitation in Traumatic Brain Injury Patients, Vol. 97, Issue 10, e100, Archives of Physical Medicine and Rehabilitation, October 2016. Accessed at: https://www.archives-pmr.org/article/S0003-9993(16)30744-4/pdf

The Importance of Length of Stay in Brain Injury Rehabilitation

The usual course of medical interventions involves determining a diagnosis and an appropriate, relevant treatment.  Once a determination is made, treatment options can be considered.  Treatment options are developed over time and often, though not always, have a rigorous science behind them that serves to guide the implementation of that treatment.  For example, an infection might be treated with one of several different antibiotics.  The antibiotic selected must be the most potent drug for the bacterial infection – and it must be administered in a particular dose, a specific number of times per day, for a specific number of days.  Additionally, a drug may come with advisories to avoid certain circumstances or other medications – for instance, a drug can cause increased sensitivity to the sun, and grapefruit juice can interfere with certain types of medication. Finally, few medicines are universally effective for all patients, and most can result in undesirable side effects.

There are very few drugs that have been explicitly developed for traumatic brain injury.  In fact, rehabilitation is the most effective treatment known for reducing disability following traumatic brain injury.  Little has been done to understand the dosing parameters similar to the manner in which medications are prescribed to represent the best use of rehabilitation.

In a research project completed at CNS, we were able to review the response to rehabilitation in nearly 400 people with traumatic brain injury.  We found that response to treatment was different depending upon the severity of injury and time since the injury.  People with mild to moderate levels of disability (who were more than one year since injury) showed improvements due to rehabilitation when treatment extended to 90 days or more.  However, people with severe disability (who were more than one year since injury) required at least 180 days to show improvements.

People with either moderate or severe disability (who were less than one year since injury) showed improvement after 90 days of treatment – while those with severe disability showed even further improvement after 180 days of treatment.

These findings are important as they describe how people with different levels of disability also respond to a standard treatment intervention differently – both related to the severity of their disability and the elapsed time since their injury.  Expectations for how long a person should be treated, what rehabilitation efforts should be, as well as cost, must be similarly adjusted.  A “one size fits all” approach cannot be expected to result in a person achieving their highest level of recovery after a brain injury.

These findings argue for individualized dosing of rehabilitation following traumatic brain injury and, consequently, have implications for how payers and providers view application of rehabilitation following traumatic brain injury.

Parenting After Brain Injury

While there are no prerequisites for the job, parenthood is a lifelong responsibility. It is also one of the most fulfilling and important roles a person can have in life. Brain injury, unfortunately, impacts individuals without regard to their roles and responsibilities.

Persons with brain injury are challenged in their ability to care for themselves, much less others, making parenting more difficult. Yet, in order to achieve long-term success post-injury, family reintegration, including parenting, is imperative. And the best way to achieve this is through skill redevelopment during postacute rehabilitation.

The Basics Still Apply, Before and After Brain Injury

Parenting requires the ability to not only care for oneself, but to do so often in deference to caring for children. Parents are frequently required to subjugate their needs and wishes to the importance of providing for the well-being, nurturing, education, safety, development, and future of their children.

This requires a mindful approach, planning with a spouse or partner, or managing alone with family and friends to provide for housing, food, clothing, and education all the while seeking to instill family and societal values. Most parents want their children to be safe and to have a future that is the same as or better than their own.

Raising children presents a range of personal challenges to most parents. It may require developing a willingness for selflessness while acquiring skills as a teacher, mentor, role model, and disciplinarian, at least. Many couples acknowledge that arriving at a parenting style can be arduous and the source of conflict in their relationship as they negotiate stylistic differences and determine and articulate behavioral, educational, value, and moral expectations for their children.

Relearning Parenting Skills is Vital to Family Integration

After brain injury, however, individuals tend to become more focused on themselves, and fail to provide the same kind of parenting approach/skills as they exerted prior to injury. They are likely to be much less involved in child rearing, in general, failing to participate in determining, communicating, and facilitating goals for their children. These responsibilities either are not met well, or fall entirely to a non-injured spouse, partner, or family member.

Active discussions must be undertaken with an individual and/or couple to raise awareness of the importance of assessment and intervention for parenting skills, and to actively intervene to redevelop such skills and focus within the family. Family members must be relied upon to build an understanding of parenting skills and styles prior to injury as well as parenting-related family dynamics so as to serve as goals for treatment.

These efforts must focus not only on reacquisition of parenting styles and skills, but also on parental engagement with children in accordance with the manner in which they engaged prior to injury. Finally, teaching must include knowledge of common reactions children may have to the temporary or permanent loss of a parent to injury. Counseling can be extremely effective in raising awareness of these issues and changing behaviors within a family system. Counseling can incorporate other family members such as spouses/partners, children themselves, or key extended family members with meaningful insights such as close aunts/uncles or grandparents. Re-engagement within a family system to the various roles one played prior to injury is critical to the long-term success of family reintegration.

Brain Injury Medicine

Individuals who sustain brain injury face a unique challenge with their health professionals. Brain injury is now widely viewed as a disease in the medical field, however patients are not yet granted the benefits and opportunities in treatment as are necessary for disease management. Increasing awareness of brain injury as a disease, and exploring the challenges of brain injury treatment will help us reevaluate our current system.

Brain Injury as a Disease

A brain injury is remarkably complex. Emerging evidence suggests that, like cancer, brain injury may actually be comprised of a number of distinct diseases that vary by the etiology of the injury, the nature of the injury, co-morbid health conditions prior to and since the injury, and factors such as gender, race, age, for example.

When the brain is injured, consequential effects often occur within immune, endocrine, and autonomic nervous systems’ functions. Persons with brain injury can become very sick, very quickly, seemingly only heralded by relatively minor early symptoms. Though we do not fully understand why this heightened period of illness occurs, it is likely a result, in some capacity, of the changes to the body’s systems’ functions.

Challenges of Brain Injury Treatment

Medical professionals working within the confines of our current system are often unable to dedicate sufficient time to a patient with brain injury in order to address the full scope of his or her injury, which includes cognitive, behavioral, communicative, and/or physical disabilities. Furthermore, these medical professionals are rarely able to stay current enough on the case to identify advisable and inadvisable medical practice patterns, thereby increasing the odds of treatment-induced complications.

Patients and their families cannot assume that medical providers are alike in their knowledge and experience. For example, the notion that patients can be best followed by practitioners in their home community is seriously flawed. Locality does not replace the prerequisite for a practitioner with expertise on brain injury. In fact, many of these less experienced practitioners are unaware of the comparative medical fragility associated with brain injury. Many poor medical decisions could have been avoided had the proper brain injury specialist been consulted.

Additional challenges can be found in the person’s inability to fully and competently participate in his or her medical care and decision-making. Cognitive, behavioral, communicative and physical disabilities following brain injury can make it difficult, if not impossible, for a person to recognize changes in his or her health, convey those changes, recognize improvements, or a lack thereof, in health following a medical treatment or intervention, accurately convey medical history or the history of present health problem(s), obtain appointments for procedures or laboratory studies, obtain prescribed medications or otherwise properly adhere to a prescribed treatment regimen. One might conclude that the attendance of an advocate or family member to medical appointments will mitigate such difficulties, and while helpful, such participation often fails to provide improved results.

Reevaluating our Current System

In my career, I have seen many downstream medical decisions result in serious and, sometimes, deadly consequences. These have always been avoidable and unnecessary, and borne out of a lack of knowledge.

A general physician cannot reasonably manage a patient with a complicated cancer, and brain injury is no different in this regard. We need to develop mechanisms that enable a patient with a brain injury all the same benefits as those allowed patients with complicated diseases such as cancer or cardiovascular disease. Simply put, there is no substitute for an individual case being followed closely by an experienced brain injury specialist.

The Family Dynamic after Acquired Brain Injury

Brain injury can change nearly everything, not only in the injured person’s life, but also within the lives of his or her family members.

Early after a brain injury, family systems become embroiled in the injury as they address arising issues. Sleep gives way to ICU vigils. Quiet moments give way to prayer. Casual discussions give way to serious conversation. These days are ruled by fear, with small glimmers of hope to serve as momentary relief.

Recovery, to a greater or lesser degree, eventually occurs. Time passes, hospital stays end, and the injured often return home.

Unfortunately, families are all too often solely responsible for redefining a new normal, as our society does not yet effectively provide sustained support. Understanding how to cope with the many changes after brain injury, and a willingness to implement coping mechanisms will make all the difference.

These eight tips are a great place to start:

  1. Counseling

Counseling can ease burdens and facilitate grieving, adjusting, and managing, all without giving up hope. However, not all families can afford such care, and for that reason, there are the other seven tips.

  1. Attitude

Realistic optimism, positivity, and hope offer an opportunity for a brighter and happier new normal. Humor can help keep spirits high. And in spiritually oriented families, solace and confidence come from actively practicing their faith.

  1. Communication

Everyone handles grief and the subsequent changes within their lives differently. However, it is important to remember that each family member, no matter their role in the injured person’s life, is going through these changes together. Communication is a portal to common ground and unity.

Scheduling a regular time to discuss the injured person, and any related issues, can help family members to open up, creating a more approachable and manageable situation.

  1. Individual Focus

Imagine a wagon wheel with a hub and spokes. Families often operate by moving one member or another in and out of the center of the wheel, as his or her issues and needs call for priority. After a brain injury, it can become habitual to keep the injured person in the center of the wheel. It’s important for families to find a way to move others in and out of the circle again.

  1. Self-Care

Taking care of oneself can seem inappropriate, especially for parents. However, if one uses oneself up in the care of others, there will come a time when the person has nothing left to offer others. Take time for yourself, and maintain some semblance of your hobbies and interests.

  1. Socialization

Because of the many demands of brain injury, it can be difficult to find the energy or money to socialize outside of the home. And it can feel wrong to seek pleasure while a family member with brain injury cannot do the same. Yet, socializing can help heal by providing a healthy sense of perspective.

Tell your friends what works, when you need to discuss the injury, and when you need to discuss anything but the injury. Friends and family may need your patience and forgiveness, as they may offer advice that is not useful or feels judgmental. No one knows how to act in these situations, and they are no exception.

7. When to Feel

There is time for grieving, sadness, and loss. So too, there must be time for hope, joy, and laughter. It is okay to take out the “pity pot” filled with your sorrow, despair, and loss. But then, with deliberation, put the “pity pot” back in the closet for another day. You will use it again and again, just always remember to put it away. In this way, you can avoid becoming mired in grief.

  1. Balancing Acceptance

Some parents fear doing anything that might look or feel like they’ve accepted their child’s level of disability. It’s good to desire further growth and improvement post-injury, but there is a limit, and it is not healthy to be consumed by the drive to wring more recovery out of an injury. It is crucial to balance both acceptance of your new normal and hope for continued improvement.

One day I noticed the fine print on a cereal box, “Contents may settle during shipping.” The advisory served to avert any concern I might develop when opening the cereal to find it only three fourths full. I liken this advisory to balancing acceptance. So too will your “contents” settle as you move through your family’s changed world. One can and should actively explore changes wrought by brain injury in the family because realization of these changes will happen eventually, with or without your consent.

Those who find a way to bring balance back into their world are more apt to successfully take on the ripple effects of brain injury on their family dynamic. And, to be sure, the injured person will also flourish to the best of his or her ability in this normalizing and positive environment.

So, please make the decision to thrive. Be a light for you and your family. Find opportunities each day to laugh, dance, socialize, and communicate deeply. In this way, you can adjust to and manage in your new world.