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!