MISSION STATEMENT:
The goal of this charity is to advocate for the optimization of long-term cognitive recovery outcomes from brain injuries and other medical disorders.
The purpose of this website is to acquaint survivors, family members, friends, rehabilitation professionals and physicians with the principles/strategies of self-therapy and adaptation training so that other survivors can attempt to optimize their cognitive recoveries as I have mine (Dr. Maria Romanas).
THE UNSATISFACTORY RESULT OF NATURAL RECOVERY
The injured brain no longer adapts on its own. Unless a survivor is taught to cope with and adapt to his or her permanent deficits, a good recovery is not possible.
My own natural recovery was not a good outcome. My injury occurred in 1984 during a roll-over car accident at age 18 and is considered severe (skull fracture, 3 days coma, 7 days post-traumatic amnesia).
After 29 years of struggling on my own, it took 8 weeks of intensive adaptation training with Dr. Schutz to turn my insufficiently successful recovery into a sufficiently successful recovery.
I learned to become a student of my own brain and learned its idiosyncrasies by learning to pay close attention to my Brain-Injured Moments (BIMs). These BIM’s do not occur randomly, but in patterns that are task- or situation-specific.
I needed to write each BIM down, study them, and figure out what it was about that task or situation that put me at risk. I then made and wrote down a plan to anticipate a similar risky task or situation and to implement one or more compensation strategies to prevent making the mistake again.
I solved my brain injury, one BIM at a time. Did my brain “heal itself”? No, my cognitive impairments are permanent. The automatic operating system in my brain works fine much of the time for “easy” and routine tasks, but “hard tasks” and certain situations can trip up my brain and produce disabled functioning.
I learned a new way to operate my brain. Instead of depending on my damaged brain’s automatic functioning, I can deliberately put my conscious mind in the driver’s seat to pay close attention, recognize risky situations, and implement the right strategy at just the right time to get the task done properly.
This new “operating system” skyrocketed me off the plateau of recovery I had been stuck on for decades. I am much closer to achieving my pre-injury potential and continue to upgrade my recovery year by year as long as I continue to contend for it.
I graduated as my own self-therapist from intensive adaptation training. Although my cognitive impairments may be permanent, the degree of disability they cause is primarily up to my vigilance and determination to anticipate and prevent problems before they occur.
Simply surviving does not produce a meaningful life. One must move from the passive mindset of surviving to the active mindset of a cognitive recovery warrior to restore a sense of self-efficacy and regain purpose and meaning. Just as a recruit requires training to become a soldier, a survivor also requires training. Unfortunately, such training is hard to come by and difficult to pay for.
WHY DOES BRAIN INJURY RECOVERY STALL?
Cognitive recovery from brain injury stalls primarily due to executive dysfunction, which occurs in all but the mildest injuries.
One of the many consequences of executive dysfunction is loss of adaptation. The connections between brain networks that adapt the normal brain’s functioning to the individual’s life challenges in real time are easily scrambled. The networks in the damaged brain no longer function in a coordinated manner and can no longer automatically adapt automatically and unconsciously to hard tasks or situations.
Anosognosia (lack of insight or self-awareness regarding one’s one deficits) also occurs in moderate-severe brain injuries and a significant proportion of even mild brain injuries. This makes the adaptation problem even more difficult to resolve. One cannot consciously adapt to a problem one does not recognize.
Lack of adaptation results in functional failures that are often surprising to onlookers and easily forgotten and discounted by the survivors themselves. Instead of learning from their mistakes, they are doomed to repeat them.
The result is a chronic syndrome of partial disability that negatively impacts all adult roles and erodes relationships. They are often completely unaware of the truly insidious nature of their dilemma. Because survivors often look and sound normal, their spouses, employers, and friends chalk up their intermittent undependability to a personality change or a character defect.
Even their physicians are clueless. Assessment and detection of attention/memory impairments or executive dysfunction is simply not part of their training. The impairments cannot be detected by physical exam or by casual conversation during an office visit. Even if a physician takes the time to administer a mini-mental status exam (used to assess dementia), a survivor will typically “ace” the exam, falsely reassuring both physician and patient.
THE BLACK HOLE IN THE MEDICAL MODEL FOR OPTIMIZING OUTCOMES
There is a black hole in the medical model with respect to equipping brain injury survivors for optimal long-term cognitive recoveries. The clinical problem of chronic partial disability due to executive dysfunction does not fall in the domain of any medical specialty.
Neurosurgeons can keep moderate to severely injured patients alive and eventually send them to rehabilitation, where the emphasis of the rehabilitation physicians is on physical rehabilitation and getting the patient functional in terms of activities of daily living so they can be discharged.
In a rehabilitation setting, any cognitive rehabilitation is relegated to non-physician professionals (speech-language pathologists and occupational therapists). The natural course of the cognitive recovery often seems like a “miracle.” Everyone assumes that they will continue to cognitively improve upon going home, but little to no improvement is made without ongoing professional guidance following discharge.
Mildly injured patients are usually evaluated and sent home from the emergency room or after an overnight stay for observation, often with no follow-up. Even if neurological follow-up is arranged, a neurologist can make the diagnosis and might make a referral to a neuropsychologist. However, most neuropsychologists merely perform assessments of impairments and are not trained in neurorehabilitation.
Many survivors end up seeing psychiatrists for anxiety and depression, which often do not respond well to standard medications. Some psychiatrists refuse to see any brain-injured patients. It is our experience that effective cognitive rehabilitation/adaptation training often ameliorates anxiety and depression of traumatic onset as a sense of self-efficacy is regained.
However, the majority of brain injury survivors receive little, if any, cognitive rehabilitation beyond an inpatient setting. Even the little they receive does not generalize to the challenges involved in salvaging and rebuilding their lives. Reasonable accommodation is sometimes initially helpful in a work setting, but the real problem of keeping and performing well on the job is the lack of adaptation.
Therefore, the plight of brain injury survivors is not currently understood but the medical system or by individual physicians caring for them. Education regarding cognitive impairments and the specialized knowledge needed for cognitive rehabilitation is simply not part of any medical specialty training program.
I have interacted with dozens of first-year residents who never learned anything about the care of TBI survivors beyond the acute care or neurosurgical setting. None of them had ever even heard the terms “cognitive rehabilitation” or “compensatory strategies” during four years of medical school.
The only professionals who understand cognitive rehabilitation are not physicians (speech-language pathologists, occupational therapists, and some neuropsychologists) so they currently have no “say” and little standing to advocate for advanced cognitive rehabilitation in our current medical system.
PREMISES
Natural recovery is always incomplete, and after a severe injury, the result is nearly always unacceptable. The lifestyle of the majority of adults with severe head injuries is that of a pre-adolescent – no significant productivity, no substantial responsibility, and need for ongoing supervision, etc.
With sufficient intensive and effective cognitive rehabilitation, this outcome can be reversed.
Outcome research indicates that conventional post-acute rehab is not effective at that level. Even when the latest and newest popular restorative approaches produce partial improvements in impairment, they do not reverse disabled functioning.
At a process level, effective rehabilitation utilizes a distinctive curriculum, which is available only on the eastern seaboard and a small group of landmark programs.
Top neurorehabilitation experts are not satisfied with simple improvement. The goal is training the survivor for a functional vocational recovery. It is important for people to get their lives back. This requires training them to develop a compensatory substitute for their permanently inactive executive system.
PURPOSE OF THIS WEBSITE
The information in this website is exclusively educational for the purpose of guidance on the road to recovery. Learning this information is relatively easy but ineffective unless one is willing to swallow their pride and work hard to contend for their recovery moment-by-moment and day by day.
Any progress in recovery is dependent on the survivor’s own humility to recognize one’s mistakes and the determination to learn from them to prevent future mistakes. The nature of the recovery is compensatory. Constant vigilance is required to maintain it. The brain never “heals itself” with respect to reconstituting the executive system or reversing other memory or attention impairments.
This website does not and will not provide any kind of medical, psychological or other professional treatment, evaluation, service or opinion, nor does it or will it charge any fees. It is not meant to provide or substitute for cognitive rehabilitation services but to help to fill in the knowledge gap and provide some guidance after formal rehabilitation has run its course.
Under the Self Therapy tab are the Giveback survivor and family member manuals on learning to recognize and prevent brain-injured moments. Every survivor must try to find a family member or friend to be a recovery partner.
Survivors require the feedback of others because it is difficult for them to see their own deficiencies even when they can recognize deficiencies in others. In order to proceed in recovery survivors need to be humble to accept feedback and to learn from their mistakes.
Survivors are often more open to feedback on their performance from other survivors, so it is recommended to participate in a Giveback recovery group setting. See the tab Self-Therapy for the GiveBack survivor and family member manuals and more information.
However, the absolute best form of adaptation training is the 8-week intensive program Self-Therapy for Adaptive Recovery (STAR). Unfortunately, the program is not currently being offered. Dr. Schutz is no longer physically capable of running this program without assistance. The curriculum for the STAR program is complete. It has not been formally published but can be made available for rehabilitation professionals to use.</font color=”black”>