Brain Recovery Support System

Success Stories – What Worked?

Over the past year I have read a number of books and blogs written by survivors and their caregivers.  I enjoy hearing about the tenacity, courage, and ingenuity of these folks, and am cheered by the amazing progress the survivors have made over the years.  What frustrates me, as a professional interested in aiding this population, is the scarcity of details about the tools that worked in the long process of recovery.  Since recovery often takes years, what are caregivers doing after the insurance runs out? What help have they found, what materials have they discovered, what trends have they noticed? I think that professionals may not have all the answers, and that we need to benefit from the experiences of the people in the eye of the storm.  

My Stroke of Insight was one of the first “survivor” books  that I encountered. Even though the survivor is talking about recovering from stroke, the material was relevant to me since a stroke following a brain injury may complicate recovery; also, the effects of stroke and TBI are often similar.  Certainly the author Jill Bolte Taylor (whom I have since seen on YouTube at a TED conference) is a remarkable woman, brilliant, charming, and dedicated to brain research.  But it was her mother’s efforts in retraining a very damaged brain that really revved my engine. I wanted to know more!  I assumed that I would be able to find out the details easily enough and that there would be plenty of information out there, so I should just keep looking for similar materials.  Unfortunately, I am still looking.  I have read technical accounts of research and numerous self-help books and books by professionals  (for example: Brain Injury Survival Kit by Sullivan, Brain Injury Survivor’s Guide by Jameson, Mindstorms: The Complete Guide for Families Living with TBI,  The Mild Traumatic Brain Injury Workbook by Mason) and my frustration continues to grow. I have investigated software company offerings, read other blogs, and talked to professionals working with this population, and I am not finding the answers I am seeking. What long-term efforts are paying off?  What techniques and tools are caregivers finding helpful when the professionals are long gone?

I have decided that maybe I am not asking Google the right questions, so I am putting this question out there:  Do any of you know of  detailed accounts (I am talking about the level of detail that would help other caregivers and professionals improve their efforts) of long-term cognitive retraining by caregivers?  Of course, every survivor is different and so  every survivor’s path to recovery will be different, but I believe that there is valuable, hard-earned knowledge in the minds of these caregivers, and I am determined to find out what it is and share it with other families and other professionals.  Heck, if I have to do it, I will interview these heroes myself and write an e-book, but there is no need to re-invent the wheel, so if such resources are already out there, please help me find them!

The Remarkable Brain – Oliver Sacks Rocks Yet Again

The Mind’s Eye gives a glimpse into the wonders of neuroplasticity  – the ability of the brain to adapt in the face of injury or disease.  Oliver Sacks reminds us of the power of creativity, determination, and courage with eminently readable stories:  a paralyzed woman does the NY Times crossword in her head; an aphasic woman who learned to communicate with gusto in her own way; people who could write although they had lost their ability to read; the author’s own struggles with face blindness (inability to recognize faces, even his own).

These tales of resilience are as encouraging as they are amazing.  When one deals with brain injury, it is essential to remember that the brain can adapt and people can recover or learn ways to cope in the face of cognitive difficulties. This gives caregivers and survivors the courage to go on and find their own unique pathways to improved function and better lives.

“All TBI Cases Are Different”

You will hear professionals make this statement on a regular basis, and you may wonder why these differences exist.  Reasons include the severity and location of the injury, the existence of other conditions due to the accident, the resources available for recovery, the amount of stress in the life of the survivor (both before and after the injury), the condition of both brain and body before the accident, and the habits and attitudes of the survivor.

The condition of the brain and the rest of an injured person’s body will vary dramatically, even without taking into account the various types of injuries and the severity of injuries. Age, education, occupation, and lifestyle are important factors in the recovery process.

Age at the time of the injury is crucial because of developmental differences in the brain over the lifespan. Many TBI survivors are adolescents or young adults.  The human brain is not fully mature until around age 26; in fact the  immaturity of the brain may have contributed to the injury in the first place (judgment, planning, and decision making, all late to mature in humans, are what keep us from making disastrous decisions). Middle aged survivor’s brains are also different from those of  older adults. However, recent research tells us that the decline of brain functioning expected in old age is often less important than we used to believe, and that other  developments in an aging brain may make up for declines in processing speed and minor memory glitches (check out Barbara Strauch’s amazing book, The Secrets of the Grown-Up Brain). When retraining injured brains, it is  helpful to keep developmental differences in mind.

Differences in education, occupation, and lifestyle  can create impressive differences among adult brains at any age.       Education seems to help the brain create “reserves” which can lessen the impact of Alzheimers and TBI.  Occupations that are challenging, complex, and varied can have a similar effect.  Lifestyle, including, exercise, diet, and leisure activities (reading, learning to play a musical instrument, taking up new learning experiences,  and knitting complicated patterns, for example) can also make a difference.

Attitudes are very important in recovery from a brain injury.  Depression and anxiety are frequently problems after a brain injury, which isn’t at all surprising, given the sorts of changes in lifestyle, abilities, and independence faced by a survivor.  One of the most useful tools in working with survivors is Martin Seligman’s Positive Psychology, an approach that is straightforward, sensible, and effective.