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What to expect and how to get your life on track after traumatic brain injury

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The family and friends of the victim feel the psychic repercussions of the head injury acutely as well. Caring for an injured family member can be very demanding and result in economic loss and emotional burdens. 

    It can change the very nature of family life; the resultant emotional difficulties can affect the cohesiveness of the family unit. 

     Typically, the emotional damage is intense, affecting family and friends for years afterward and sometimes leading to the breakup of previously stable family units.

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       Ready for action?  This page will serve as your starting point on the road to recovery from Traumatic Brain Injury. It will tell you how to get there and what to expect along the way. It will show you how to identify your needs and, have them met. It will help you measure your progress as well as setbacks.  It will encourage you to stay the course in the face of disappointments.  It will help you to know when to cut your losses and chart another course.  Through out it all we will be here with telephone 206-621-8558, and email: brain@headinjury.com, backup.

          How to get there.  Traumatic Brain Injury, TBI, undermines a lifetime of learning and personal development. Often the effects of head injuries are not immediately apparent.  Many months may go by before such changes become apparent.  For many who sustain head injuries the effects last for a few days or weeks. For many others the problems last a lifetime. 

          If you have sustained a brain injury, or know someone who has sustained a brain injury, or simply want to become more organized, deliberate, and goal oriented this site is for you.  Whether your injury was recent or many years ago the information on this site will help enhance your quality of life. Our methods will help you become more focused and effective in pursuite of your goals. 

          Even more important, the tools you will gain will enable you to create and sustain feelings of self-confidence, clarity, and vitality.  If you have been diagnosed with brain injury of one type or another the first thing, you want to do is to become knowledgeable about your specific condition.  You will find links to information on many types if brain injury on the Support Group link on our Library page.  You might also want to take a look at the TBI Checklist page http://www.headinjury.com/checktbi.htm , to get a sense of your symptoms or impairments.  Remember that this is a fluid measure, that is it is intended to be used repeatedly, over time to gain a 3-D picture of the true nature of your impairments. 

          WARNING.The presence of such symptoms can indicate serious health problems.  Anyone experiencing such symptoms should be checked out by qualified medical professionals.

          The next thing that you will want to do is to get a sense of how such impairments impact your performance, your productivity and your relationships with others, see our Essentials Skills Inventory , http://www.headinjury.com/selftest.htm . Once you've completed this inventory you will be ready to make changes to improve your daily functioning, and enhance your professional performance and success. 

          The tools and resources on this site will enable you to make quantum leaps forward in your personal development. Your adoption and implementation of our methods will help you revitalize relationships, see our As Others See You page, as well as our As You See It page. In Addition, our tools will help you transform burn-out, and make health enhancing lifestyle changes, see our Wellness Inventory.  They will help you design a clear, specific vision of what you really want in relationships, career, money, health and personal happiness.  See our Goals Analysis page, http://www.headinjury.com/goalquest.htm , and our When I Grow Up page, http://www.headinjury.com/growup.htm . Most importantly, they will empower you to develop practices and habits that will enhance your quality of life and expand your capacity to enjoy life.

         No one can predict with any certainty how long TBI impairments will last.  They might last for a few weeks or they might linger for many years. No matter how long they last, they are characterized by problems such as memory loss, impaired concentration, attention disorders, mood swings, mental sluggishness, impulsivity, heightened arousal, personality problems, fatigue, and diminished IQ, etc.  They are symptomatic a neuropsychological disorder caused by brain injury due to head injury.  It is known as Post Concussion Syndrome, PCS.  Even mild TBI, also known as concussion, can cause sweeping changes in the way the brain receives, processes, stores and retrieves information. But whether they last for a few months or linger for many years, the tools on this site can help you minimize their impact on your life.  For example:

          1. TBI can interfere with the ability to manage multiple, simultaneous stimuli. In other words, ordinary sights, sounds, smells, light etc in the environment, known as, "sensory stimulation" bombard and easily overwhelm the injured brain. The brain tries to process all of this through sorting and filtering mechanisms that have been disrupted by TBI.  This susceptibility to "environmental noise" can diminish an already sluggish capacity for thinking, focus and attention. Persons without brain injuries are generally able to filter out distractions and concentrate on the one thing they are focussing on. People with brain injuries may have a substantially reduced capacity to filter stimuli, for them doing so requires extraordinary effort and vigilance. 

         2.  The extra effort, vigilance, and concentration needed to compensate for such deficits result in an enormous fatiguing effect.  Such an effort produces a continuous drain on energy levels and results in chronic fatigue. Intellectual functions such as short-term memory tend to deteriorate as fatigue increases.  Such deficits give rise to a vicious cycle that leads to feelings of inadequacy, discouragement, irritability and depression. 

         3.  Such changes can turn a person into a non person, effectively incapable of performing, routine daily activities.  The challenge then becomes to put in place compensatory strategies to help your adjustment to a new set of strengths and weaknesses, and a framework for a redefinition of self and purpose.  The question then becomes “What remains of me?” and “What remains for me?”  The trick is to become more self-aware, more Zen. The goal is to live in the moment, to be still in the midst of chaos. Our methods teach you, to restore your mental filters. They teach you to clear your mind and your environment of clutter and distractions.  See the Loss Self page, http://www.headinjury.com/losself.htm, and the also see:
Found Self , http://www.headinjury.com/foundself.htm, page. 

         4.  The destructive effects of PCS are such that the person becomes a mere shadow of his or her former self. Barring physical changes, they look the same, but distinctive details, and personality traits have been altered or lost. In the blink of an eye, a lifetime of learning and personal growth are laid to waste. 

    Changes in memory and organizational skills after a brain injury make it difficult to function in complex environments. Frequent changes in schedules and activities create a disorienting effect. 

    Damage to the frontal lobes interferes with the ability to control impulses, causing outbursts and inappropriate actions. It also interferes with the ability to appreciate consequences of behaviors. Additionally, it interferes with the ability to empathize with others. For more details refer to our Brain Map - http://www.headinjury.com/brainmap.htm 

    PCS interferes with how or whether a person goes about doing something (e.g., Will s/he do it and, if so how?) This aspect of PCS deals with executive functioning. Another aspect of PCS has to do with what s/he knows or how much (e.g., How much does s/he know? What can s/he do?

     So long as the executive functions are intact, a person can sustain considerable cognitive loss and still continue to be independent, constructively self-serving, and productive.  When executive functions are impaired. the individual may no longer be capable of satisfactory self-care, of performing remunerative or useful work on his own, or of maintaining normal social relationships regardless of how well preserved are his cognitive capacities -- or how high his scores on tests of skills, knowledge, and abilities.  Moreover, cognitive deficits usually involve specific functions or functional areas; impairment in executive functions tend to show up globally,, affecting all aspects of behavior." 

      In essence the old self is dead, done in by the destructive effects of  PCS.  All that remains are the tattered fragments of the old self. The challenge then becomes to create a new self from the the remnants of the former self.  Adjusting to the loss self is a difficult and painful process. It is one that might benefit from consultation with a professional with special training in grief and loss. 

          Once that hurdle is crossed, we explore the possibilities for developing a goal-directed purpose in life.  See the When I Grow up page, http://www.headinjury.com/growup.htm , and the
Essential Skills page, http://www.headinjury.com/selftest.htm . This focus may be quite different from pre-injury goals, see the Goal Analysis , http://www.headinjury.com/goalset.htm , page. With a re-adjusted sense of self and clear rehabilitation goals the depressive effects of such losses can be minimized.  Depression is a common reaction to the losses caused by TBI, and should be addressed with a doctor with special training and experience in TBI, see the Doctor Finder , http://www.headinjury.com/doctorfind.htm , page. 

The Process.  You will learn: 1. to recognize, identify and clarify your needs and goals.  2. To  maintain your own sense of personal power and confidence.  3.  to be sensitive to toward others without ignoring your needs and desires. 

          The following section provides a framework for the implementation of the compensatory strategies  presented on this web site.  It is a model of self-change that unlike the traditional "action" model does not blame unsuccessful attempts at change on lack of willpower or motivation.  Instead, it outlines seven stages and contends that by identifying and understanding where we are in the process, you can gain control over the cycle of change and move through it more quickly, efficiently and with less pain. 

         The seven stages are 1. pre-contemplation, 2. preparation, 3. contemplation, 4. anticipation, 5. action, 6. maintenance, and 7. termination. They are based on a book by Prochaska, Norcross, and DiClemente, entitled Changing for Good.
          1. Pre-contemplators don't think there is a problem.  They resist change in themselves yet want those around them to change.  They feel demoralized, and that the situation is hopeless, and avoid news of their problem.  See the Denial , http://www.headinjury.com/denial.htm , page, and the 
Anger page, http://www.headinjury.com/anger.htm .

          2. Preparation involves gathering information about yourself, the nature and scope of the problem, possible obstacles to the desired changes and strategies for overcoming obstacles and implementing changes. 
       See the TBI Types , http://www.headinjury.com/tbitypes.htm ,page, 
Problem Definition, http://www.headinjury.com/problemdef.htm  page, the Problem Solving page, http://www.headinjury.com/problem.html , and the links in the previous section.

          3.  Contemplators, also known as procrastinators, know their destination and how to get there, but aren't ready to go yet.  They substitute thinking for action.

          4.  Anticipators plan to change in the near future but haven't necessarily resolved some ambivalence   Their awareness of news on the subject is high, they make public their intended change, and plan carefully to learn the processes to carry them through to maintenance and termination. 

          5.  In the action stage people are busy and changes are visible --see our Daily Activity Inventory -- but action is not the same as change, then see our Action Plan page.

          6.  In maintenance, changers consolidate gains and work to prevent lapses. In cases of TBI, it is a long, ongoing,  lifelong process. 

          7.  Termination comes when the obstacle is no longer a temptation or threat, although some problems can't be terminated. 

          It is possible to progress linearly from one stage to the next, but that's rare -- very few people have no setbacks, most people go through the various stages three or four times before they complete the cycle.  Conventional wisdom has it that stages can't be skipped, people who try to accomplish changes they aren't ready for set themselves up for failure. 

What to expect.

      As a rule, doctors do not educate their patients.

       One thing  that doctors routinely fail to tell PCS patients  and their families is that recovery is a slow, lifelong process of struggle and adjustment. Although recovery is agonizingly slow, it has its rewards.  My mild TBI was in 1982, and yet, I continue struggle with the many cognitive impairments that resulted from it.  Believe you me, no one wants this thing to be over more than me, but in reality, for many individuals, there is no end to it.  Rather, you learn to live with it and accommodate it in your life. See  Patient's Perspective

Typical case history.  A family had been advised by their daughter's neurosurgeon to expect a "full recovery" within 2 years. Three years later, the family was disappointed with her progress and felt that it might be due her personal failings. Despite her hard work and remarkable accomplishments, they seemed to have the impression that there must be some secret cure, or something that they could do to restore their daughter to her former self.

        They were puzzled by her new behaviors that more closely resembled those of a toddler rather than the mature responsible college age young lady they had raised.

        Their question to was: "will she continue to grow up and mature?" The short simple answer is yes, it is very likely that she will continue to grow up and mature, but she will never be the same.  Her old life is over. She will have to create a new life for her self, and she will have to reinvent herself out of the ashes of her destruction.

    It is likely that she will remain dependent on you for many years to come.  She probably longs to be free of parental controls.  Every healthy, young  person longs for the day when they can be free of such constraints. Unfortunately, her TBI impairments have gotten in the way of her ability to fulfill that very basis instinct.

    Their questions concerning her "maturity and 'apparent' irresponsibility"  did not provide sufficient details for me to gain a clear understanding of what they meant. What appears to be immaturity and irresponsibility might be the effects of her TBI. This is not to say that she will not continue to progress, but it means that any progress will be much slower than you would expect from a fully intact, bright, capable young adult.  Consider the following:

When you are diagnosed with PCS it means that you have been saddled with an unreliable memory, http://www.headinjury.com/surveymem.htm , chronic fatigue, and unpredictable mood swings.  Some persons become emotionally volatile due to their injuries. Such problems might be due to frontal lobe injuries and become “rigid” in their thinking. (this means unable to be flexible in their ideas or behaviors) and unable to wait. 

    Individuals with frontal lobe injuries may be confused by metaphors. While others with injuries to different regions of the brain may rely on the use of symbols or analogies to make points more concrete for them. Some persons experience severe visual problems and can not tolerate certain clothing patterns, or fluorescent lighting that trigger seizure-like activity. TBI can cause you to become hypersensitive to light, sound, and stimulus of all types.  It can interfere with your biological cycles, such a sleep, appetite, respiration, digestion, etc. See our TBI Checklist. http://www.headinjury.com/checktbi.htm

A diagnosis of TBI means that:
problem solving , http://www.headinjury.com/problem.html , and decision making , http://www.headinjury.com/problemdef.htm , become more difficult.  It means that doing things and understanding things takes more time and effort than before TBI.  It means that reaction time will be slower, you will become more excitable, and your sense of knowing will be different, alien even.  It means that organizing and expressing your thoughts will be more difficult, see our Essential Skills page,  http://www.headinjury.com/selftest.htm .

    It means that understanding and interpreting subtle clues, body language, and facial expressions will be more difficult. It means that self regulation and self appreciation will be diminished.  It means that judgment and discrimination will be impaired.

At the end of the day
    A diagnosis of TBI means that maintaining an appearance of reasonable normalcy requires extra effort and vigilance which creates a chronic fatiguing effect which means that you will need frequent rest breaks and more quiet time.  To ignore this requirement means that you will be continually bouncing off walls, offending, and alienating everyone in the immediate vicinity.  See 
our Wellness Journal , http://www.headinjury.com/wellness.html

    Headaches and other physical symptoms could be signs of the need for more rest. They could also indicate the presence of a TBI related vision disorder. To distinguish between headaches and head pains, see our FAQ page for help with such distinctions.  Additionally, check out the resources on our headache page, http://www.headinjury.com/linksha.htm.  Also visit the sites on our vision disorders page, http://www.headinjury.com/vision.htm  as vision changes are common after TBI.  Also consider dehydration and fatigue, and seizure disorders as possible causes of headaches.  Be sure to report these and any other symptoms of illness or diminished functioning to a qualified medical professiona. 

    Living with TBI  means that a lifetime of learning and personal growth goes out the window.  It means that you must learn everything all over again. You should know that your learning style might have changed too.  It also means that you have to grow up all over again.  The second time around isn't any easier, but you can get through it in a lot less time.  The best part about it is that you have a lot more say in it.  See our When I Grow Up page, http://www.headinjury.com/growup.htm .

       TBI means that you are no longer the person that you used to be.  This means that the old self is lost, a victim of the destruction of  TBI, see the Lost Self page, http://www.headinjury.com/losself.htm

     Surviving TBI means that, like the mythological Phoenix,  you must reinvent your self from the ashes of your own destruction, see our Found Self page, http://www.headinjury.com/foundself.htm.  It means that you must embrace and love this new self, warts and all.  It means that you must continually reform and refine the new self as you progress through life's many phases, and challenges, see Essential Skills, http://www.headinjury.com/selftest.htm

    Restoring quality of life after TBI means that you must learn to work smart,  http://www.headinjury.com/actionplan.htm conserve energy, become highly focused and deliberate in all things.  Doing so means that you must learn to live in the moment, as distinguished from living for the moment.  One is very self conscious and thoughtful, the other is self centered and reckless.

    Living well in spite of TBI requires that you become intimate with it as it affects you and your family. And, then you must create a plan , see our Goal Setting page, http://www.headinjury.com/goalset.htm , that addresses your needs and those of your family. It means that you must face and deal with the deeply painful emotions on all sides, see our Anger Inventory, http://www.headinjury.com/anger.htm .  Don't overlook feelings of guilt, resentment and denial, http://www.headinjury.com/denial.htm , that afflict family and loved ones.  See links to Well Spouse Association, and the Family Caregiver Alliance on our Support Group page, http://www.headinjury.com/linktbisup.htm.

    Living well despite TBI requires you to reaffirm your values and priorities  It means that you must become more skillful, see Assertiveness Quiz, http://www.headinjury.com/assertquiz.htm , and tactful., see As Others See You,  http://www.headinjury.com/asothersee.htm   It also means that you must become your own advocate see Advocacy Skills, http://www.headinjury.com/advocacy.htm ,  It also means that you must make a special effort to become sensitive to the needs of your family and loved ones, see our Pop Quiz , http://www.headinjury.com/popquiz.htm .

    A diagnosis of TBI means that learning new information becomes very difficult.  It also means that relearning old information is easier than learning new information. Bottom line, learning becomes more difficult after TBI. It also means that you become more distractible, and your ability to attend and concentrate have been diminished.  TBI also means that you will have greater difficulty filtering stimulus in your environment.

    This along with all of the above school becomes more of a torture chamber for students with TBI than it is for those without such injuries.  Changes in memory and organizational skills after a brain injury make it difficult to function in complex environments. Frequent changes in teachers, classes, schedules and activities create new challenges for the student.  Special accommodations such as readers, tutors, note takers, extra time on test, and open book tests ease the transition. Think of a tape recorder as an assistive device - record lectures, some schools provide this service. 

     Fortunately, the law understands such special needs and requires schools to provide reasonable and necessary accommodations for students with special needs, see our Little Red Schoolhouse page, http://www.headinjury.com/school.htm .

    Such a multitude of impairments might cause a person to be perceived as "immature and irresponsible," but it might be an unfair characterization.  TBI impairs the ability to to respond to the demands of daily living, yet in spite of such an enormous burden living well with TBI required you to demonstrate leadership in ways that would tax those without TBI.

    Understanding the effects of TBI in your life requires that you make honest appraisals of who you are and what you hope to achieve within the context of your situation. It also means that you must possess enormous patience and forgiveness.

Living well in spite of TBI means that you must learn be smart and to work smart.  My best advice would be to encourage you daughter to continue along the lines she is going,  taking courses and rebuilding her skills.  This whole process must be very grim for her.  At the time of her accident she was poised on the brink of independence when it was snatched away from her.  She had completed a very grueling rite of passage, when she graduated from high school.  She was looking forward to a normal, college career, another important rite of passage.  Then along comes a head injury which strips her of the ability to compete with her friends, and diminishes her capacity to enjoy life. End of case history.

You should know that:

    1.  MRI, PT-scans, CT-scans and the like are historically insensitive to the microscopic lesions that result from Traumatic Brain Injury, TBI..  These lesions (wounds) cause a condition known as Post Concussion Syndrome, PCS.

    The definitive test of PCS is a battery of test known as a neuropsychological assessment.  Typically, a "neuropsych" will contain, among other things, a standard IQ test as well as measurements of high level mental functioning such as  memory, concentration, attention, mood, execution, and initiation.  Assessments of test scores are compared to those of individuals with similar backgrounds (demographics) who do not have a history of head injury. Test performance is judged against past accomplishments as well as other influences in your personal history.

    2.  Many doctors do not believe that long term impairments result from mild TBI.

   Neuropsychological rehabilitation programs are designed to treat such conditions. Often, psychological counseling is needed to deal with the many, chronic impairments that follow head injury.

    3.  Many doctors believe that a loss of consciousness is essential to a diagnosis of TBI.
    4.  In my experience, "pseudo seizures" can be controlled by careful lifestyle management.
         This, of course, has to be accompanied by balanced life-styles of good nutrition, sleeping habits, exercise routines.  It is advisable staying away from drugs and alcohol which accentuate depression and increase dis-inhibition.

    5.  Memory mood and  fatigue are the top 3 complaints of TBI patients. 
    6.  Persons with a history of sexual abuse, child abuse, depression, as well as individuals with a history of unresolved emotional disorders, face special difficulties following head trauma. 

    Important Note:  While the appearance of Post Concussion Syndrome impairments can be worrisome, rest assured that they will get better over time.  You should notice progressive improvements especially if you actively work at getting better. While the rate of progress might be much slower than usual, its better than the alternative. For many individuals the rate of progress can be excruciatingly slow.  Often years of hard work are required to achieve a level reached in weeks pre-injury.   The information and resources in this section will help you increase your self awareness, and help you monitor your progress as well as set backs.  Remember, sometimes you have to go backward to go forward. 

    The success of rehabilitation usually depends on three main factors: (1) The age of the patient.  Younger patients typically make better recoveries than older patients. (2) The amount of brain tissue damage and where in the brain the damage occured. Some functions are less specific than others and the brain can compensate by making new connections. Other functions, like speech and language, seem to more "hard-wired," and if the basic neural "circuitboard" is damaged, less recovery is expected. (3) Persistence. The three rules of successful rehabilitation are practice! practice! and practice! Even in the face of seemingly overwhelming odds, near-miraculous "recovery" is possible when patients, their families, and knowledgeable clinicians all work together diligently and persistently over time.

    However, the down-side of such expectations is that it can put undue pressure on the patient to keep "getting better" when he/she is already doing everything neurologically possible. The key is to use a combination of clinical wisdom, common sense, and compassion to make all the gains he/she can, and then both accepting the limits that remain and - just as important - finding new ways to express his/her remaining talents.

      End notes.   Sadly, there is no known cure for Post Concussion Syndrome, PCS.  In most cases PCS symptoms disappear within a few months of the injury, however, for substantial numbers of people the impairments last a lifetime.  The good news is that in most cases the impairments are manageable. That is to say , that while the impairments cause substantial limitations, it is possible to enjoy a rich, satisfying lifestyle, in spite of PCS.  In PCS as in every other area of life, there is no such thing as a free lunch.  PCS will get better if you understand its effects on your life, and make appropriate lifestyle adjustments.  Remember the more that you work that brain the smarter and faster you will will be for it. 

      Each year an estimated 5 million persons in the US sustain head injuries. Of that number, 2 million Americans sustain head injuries that result in permanent impairments.  Many such injuries do not even require a stay in the hospital, yet they result in impairments so profound that lives are forever changed.  One of the enduring puzzles of head injury is the cyclical nature of PCS impairments.  The cycles of PSC means that some days you will seem totally inept and other days you will appear fully restored, and  perfectly normal.  The appearance of such cycles causes some observers to question the true nature of such "impairments."

    Non-credit, remedial course work in basic skills will help refresh your memory and  help restore you intellectual skills. Telecourses can help you rebuild skills at your own pace in the privacy of your home. Frequently, such course are available from your public library, and they can be ordered over the phone and delivered to your home, free of charge. 

     Working the brain in this way after a brain injury can involve a certain amount of discomfort, anxiety and dread.  Additionally, you might find that learning, thinking, or doing things takes more effort, and more energy now than it did before your brain injury.  You might find that you feel overwhelming fatigue following any type of mental or physical exertion. 

    This type of experience can be very discouraging, however, don't let it get you down, the rewards of such activities are worth any negative emotions that you initially might feel.  Because you might be more susceptible to fatigue and depression, remember to pace yourself.   Realize that healing the injured brain can be a slow process 

     However, a thoughtful plan of mental, and physical exercises will help you get better faster.  Consult your doctor prior to beginning any plan of activity.

      On http://www.headinjury.com  you will find links to the web site of the National Institutes of Health  Traumatic Brain Injury  Rehabilitation Consensus Statement, October 1998.  Download it (approx. 42 pp) from the internet, http://odp.od.nih.gov/consensus/cons/109/109_intro.htm  or request your free copy by toll-free telephone out of print

    You can view the statement that I presented to that NIH Conference  by clicking on the following link on the Patient's Perspective page on the Head Injury Hotline web site,  http://www.headinjury.com/linktbinih.htm .

 As I remarked in  my comments to NIH, "... the combination of the wide ranging impairments of mild brain injury can destroy lives just as effectively as severe brain injury. "



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