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MTBI Rehabilitation: The Patient's Perspective

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MTBI Rehabilitation: The Patient's Perspective
Constance Miller, MA
October 27, 1998 
A Presentation made to the 
Consensus Development Conference on 
Rehabilitation of Persons with Traumatic Brain Injury 
National Institutes of Health 
Bethesda, MD

    My interest in Mild Traumatic Brain Injury, MTBI, grew out of my own MTBI in a 1982 car accident. Prior to that life changing event I enjoyed a full, rich lifestyle that included women's rights and health care advocacy as well as a brief career as a university professor. 

     On that fateful day in 1982, I bumped my head in a car crash and my world turned upside down. When I came to I felt as though I had been disembodied, disconnected from myself and my past. The sensation was one of being outside of my body; viewing myself from afar. It was as though my head was in the clouds and my feet were planted in some strange yet familiar place. 

     There were blank spots in my memory and gaps in my consciousness. Words eluded me and my thoughts were frequently out of control. Sounds were muffled and sometimes irritating, and worst of all, nothing made sense. I thought to myself, this is spooky, suddenly for some unknown reason the world had become a strange and scary place. 

     Instinctually, I felt that something was very wrong although I was hard pressed to get others to confirm my impressions. I desperately needed answers. Much to my horror, the answers that were offered were the wrong answers. It did not take long for me to realize that my very life was at stake. In the blink of an eye I had been transformed from a vital, mid-career professional to one of the undead. 

    Essentially, life as I had known it no longer existed for me. I had become a mere shadow of my former self. Yet something in myself propelled me onward as I launched into the task of creating a new self and a new identity out of the wreckage of my life. Fortunately, my pre-injury accomplishments enabled me to unlock the mystery of MTBI, and create a new life for myself. 

    I was relieved to find that the answers to the mysteries of MTBI were known to medical science. I applied what I learned to restoring myself and to selecting and educating my doctors and lawyers. Then, I put everything into a self-help guide called From The Ashes. Then I founded the Brain Injury Resource Center to advise people on the syndrome, on good care providers, on legal options, and on social and career services available to them. 

     Unfortunately, more three decades later MTBI awareness has not changed very much. It was that very situation, the astounding medical, legal, and social ignorance concerning MTBI that forced me to take up the mantel of head injury survivor, educator and advocate. And, it is in that context that I speak to you today. 

     As a patient educator, and advocate I am delighted to have this opportunity to participate in this consensus conference on behalf of Brain Injury Resource Center. We at Brain Injury Resource Center believe that consensus in this regard could contribute much to quality of care, patient satisfaction, and attainment of rehabilitation goals. My personal wish for this conference is that it lead to standardized measures of concussion, and prognosis for long term recovery from post concussion syndrome. 

     Clearly, TBI rehabilitation has come a long way since my concussion in 1982, however, I am sure that we would all agree that it still has a long way to go. That opinion is widely shared by WWW visitors responding to a TBI rehab poll on the Brain Injury Resource Center web site. Results from that poll have been incorporated in my remarks. In the interest of time today my comments will be limited to issues of MTBI. 

     Annually, mild traumatic brain injury, MTBI, lays waste to the lives of millions of, otherwise, young, healthy, American, families. In plain talk 1.9 million individuals will suffer serious brain injuries that are largely viewed as inconsequential. But, in reality such injuries cause devastating impairments that destroy lives just as effectively as more severe injuries. 

     Recent studies warn of relationships between MTBI and violence in juveniles. Other studies of death row inmates reveal a high incidence of TBI.  Still other studies warn of the relationship between a history of concussion and premature dementia.

     The homeless account for a yet another large number of MTBI survivors that have slipped through the proverbial cracks. An alarming number of career-ending concussions among top players has caused the NFL and NHL to rethink their views of concussion. 

     Most such injuries do not result in the obvious physical and mental impairments that characterize more severe injuries, but they do, never-the-less, result in devastating cognitive and emotional difficulties. Such injuries frequently cause dramatic changes in the individual's life course, family, career, and educational objectives. Resultant issues of identity and displacement may prolong rehabilitation as a lifetime of learning and achievement is wiped out by an injury that might not even require hospitalization. 

     The tragedy of mild TBI is that recent studies have shown that early intervention is effective against many of its most damaging consequences. Unfortunately, many such patients fall through the cracks and never receive treatment. Such neglect promotes a set of behaviors which become resistant to subsequent rehabilitation. 

     This consensus conference has the potential to draw attention to the needs of millions of TBI survivors and their families who are routinely overlooked and under served. Depression and alienation is widespread among this population of walking wounded. Abandoned by medical science they are largely left to their own devices in their daily struggles with an insidiously debilitating neurological disorder. Increasingly, they are speaking out and demanding practical information about their condition. 

     The consensus gathered from our on-line poll is that they feel left out, and locked out of meaningful dialogue with doctors and rehab providers. They feel that they are not being listened to; they feel they are not being heard; and they feel they are not getting the services their injuries deserve. 

     They want a greater voice in their care, and they want useful, factual information about their condition. They want rehab that works in the real world. They want knowledgeable, compassionate doctors and government officials. They want to be seen as unique individuals, whose opinions and needs are respected and valued. 

     More than thirty years ago doctors assured me that I would return to my old self in a matter of months. To date nearly 400 months have passed since that fateful day in 1982, and I have yet to be restored to my pre-injury splendor. At this point I am pretty much convinced that the effects of post concussion syndrome will plague me into my golden years. 

     It has not been for lack of effort that I have not been restored to my former splendor. Quite frankly, I have worked my tail off to restore my previous capabilities. I would like nothing better than to be able to once again perform mental gymnastics like I did before my head injury. I deeply resent the loss of spontaneity and youthful vigor that I enjoyed prior to my head injury. 

     Callers to Brain Injury Resource Center have expressed similar concerns about TBI and aging. Increasingly, they are rejecting the myth of "full recovery" from TBI. Increasingly, they are rejecting misconception that they exaggerate their difficulties. Increasingly, they are searching for help to manage the chronic debilitating impairments of MTBI. Increasingly, they are seeking programs that address their needs for meaningful partnerships between the patient / survivor, family and the professionals serving them. 

     Advocacy groups such as Brain Injury Resource Center are leading the way in public education. Now, it is time for doctors to do their part to develop standards, programs and safety nets to catch those who would, otherwise, fall through the cracks. I believe that the search for answers begins at the scene of the injury with emergency medical personal, and carries over to ER staff and extends to incremental follow up of one year of all MTBI patients. 

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