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Christmas 2001 my wife Dayle and I were plunged into a parent’s worst nightmare – a car accident resulting in our teenage child’s traumatic brain injury. After a month long coma Bart gradually emerged with crippling cognitive, emotional and physical deficits. Eight months of grueling therapies and the school district agrees with the hospital – Bart is not ready to return to class, and would be best served by placement in an institution. We railed against warehousing our 17 year old son in a convalescent home, and fought to win Bart a chance to struggle, heal and progress.
We were determined to keep the bar up, set difficult but attainable goals; then raised the bar again and again. Who knows for sure how far anybody can go? It takes a little faith. These officials were not mean spirited so much as driven by economics and statistical models of probable outcomes without taking into account the character of the boy or his family. We began exploring unconventional therapies.
Faced with the chaos of ‘alternative therapies,’ and painfully aware that a false step might risk further injury to Bart, we were staggered. How could we determine which approaches were safe and held real promise? Separating the wheat from the chaff seemed near impossible. Should we accept the doctors’ verdict and wait, hope and pray for the best?
Dayle and I slowly cobbled together an unofficial ‘medical board’ of trusted physicians. ‘Members’ didn’t know each other or that they served on a ‘board.’ With each promising remedy, we’d ask the docs whether it might do any harm. Some exciting approaches failed this test. Those that got a clean bill of health, moved to the next stage for further investigation. We tried several – some were useless. Others like Hyperbaric Oxygen, Craniosachral Therapy, Boyle’s Sensory Learning Therapy, Novavision’s Vision Restoration Therapy, and supplementation along the lines of Dr. Permutter’s Brainrecovery.com were remarkably successful, gradually transforming Bart’s life. Successes were anecdotal, but a neuropsych examiner years later reported hardly ever seeing such improvement in one so severely injured. TBI is a life-long condition, so we rely on this method to this day. Bart will soon be starting neurofeedback. No money-back guarantees.
Today, with high school and even a semester of college under his belt, and a couple of years cognitive therapy, Bart is a lively, charming young man, living nearly independently in his own place, with, new friends and moving forward with his life. How different the outcome had we heeded the advice of well-meaning busy bureaucrats. If there is one universal truth about TBI – it is that our loved ones who are injured need strong advocates in order to navigate mind-boggling challenges.
For survivors of severe TBI, unconventional therapies are not merely a reasonable option, they are a necessity. Best practices of conventional medicine only takes one so far, often ending at the nursing home door or, heavily medicated at home, facing long empty hours, and overwhelming families.
Not everyone has access to such a team of medical experts, but your family physician, nurse practitioner, public health officer or neurosurgeon are good places to start. Families, exhausted by the daily scramble to cope, hardly need the additional burden of ferreting out alternative therapies. Exchanging information and results among the wider fellowship of TBI should help. What’s needed is an emerging grass-roots movement, similar to Autism Speaks.
We’re not cheerleaders for particular therapies – more advocates of a persistent search for emerging alternatives. Therapies that worked for Bart may not be suitable for everyone. Nothing is 100% safe and effective, not even aspirin. Bart still struggles with diminished short-term memory, fine motor and impulse control. Psychologically our bags are always packed.
Our mission is to send a message of hope to survivors and families: more complete recoveries may be possible through use of safe, affordable unconventional therapies.
Joel Goldstein, author of No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury, Potomac Books, has written about TBI for Exceptional Parent magazine, Brainline.org and Adoption Today. He can be reached at www.tbibook.com and on Facebook, or at firstname.lastname@example.org
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