TBI – Survivors, Caregivers, Family, and Friends

Archive for May 15, 2014

SPEAK OUT! Guest Blogger Joel Goldstein

SPEAK OUT! Guest Blogger Joel Goldstein

What Veterans Need………….and Deserve

 

Boy Blogger thChristmas 2001 my wife and I were plunged into a parent’s worst nightmare – a car accident resulting in our teenager’s traumatic brain injury.  After a month long coma, he gradually emerged with severe and disabling cognitive, emotional and physical deficits.

Eight months of grueling hospital therapies and the school district agrees with the hospital – Bart is not ready to return to class and would be better served by placement in an institution. We railed against warehousing our 17-year-old son in a convalescent home and fought time and again to win Bart a chance to struggle, heal and progress.

We were determined to keep the bar up, set with difficult, but attainable, goals, and then raise 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 nonconventional therapies, cobbling together an unofficial “medical board” of trusted physicians. “Members” didn’t know each other or that they served on a “board.” If we found a promising therapy, we’d ask each of them whether it might do any harm. Some exciting approaches failed this Hippocratic test. Eventually we tried several therapies. Though harmless, some proved useless too. Others, including hyperbaric oxygen (HBOT), craniosachral therapy (CST), neurofeedback and high doses of Omega-3 fish oils, were remarkably successful, gradually transforming Bart’s life prospects. Successes were anecdotal, but a neuropsych exam several years after the accident reported that the examiner had hardly ever seen such improvement in someone so severely injured.

Today, with high school and even a semester of college under his belt, and a couple of years of cognitive therapy, Bart is a lively, charming young man, living nearly independently in his own apartment. How different the outcome had we heeded the advice of well-meaning busy bureaucrats. Brain injury is far and away the leading cause of death and disability in young people. It leaves roughly 2% of the population permanently disabled, yet remains a stubbornly invisible epidemic. With the controversy surrounding concussions in sports and TBI, the signature injury of this generation of wounded warriors, that may be finally changing.

TBI will remain a tragic legacy of wars in Iraq and Afghanistan for a lifetime. According to the Woodruff Family Foundation Remind.org, there are 320,000 TBI survivors among combat veterans. Today the elements of the VA and DOD are experimenting with HBOT for severely wounded warriors. Sheer weight of numbers presents a unique opportunity to improve outcomes for survivors, military and civilian.

Like other nonconventional therapies that helped Bart, HBOT is relatively safe, inexpensive, easy to deploy and scalable. For the cost of a couple of F-16 fighters, one could outfit and staff 300 TBI treatment centers in existing VA and DOD facilities around the country. Technicians and therapists can be trained to deliver HBOT in months, not years; medics, corpsman, LPNs, and EMTs are all suitable candidates. As an alternative to setting up centers in VA facilities, one might issue vouchers directly to veterans’ families. Private clinics should spring up to meet the demand.

After wounded veterans have been treated, centers could migrate to the civilian sector, helping the wider fellowship of TBI survivors, most of whom have no access to these treatments. Thousands might leave nursing homes, cut back on their meds and live more fulfilling lives. Nothing we could do for so little could ease the suffering of so many.

Scientific proof is still the gold standard in medicine, but in its absence what risk is there in trying alternative therapies with well-established safety records? (Divers have safely used HBOT to prevent the “bends” for 200 years.) Of course, nothing is 100% safe and effective, not even aspirin or acetaminophen. In much of Europe, HBOT is already standard treatment for TBI. The obstacles to adoption here seem to be more bureaucratic – doctors, hospitals, the FDA and insurers have yet to sort out reimbursement protocols.

For survivors of severe TBI, unconventional therapies are not merely a reasonable option, they are a necessity. Best practices of conventional medicine only take us so far, often ending at the nursing home door or heavily medicated at home, facing long empty hours and overwhelming family resources. Survivors are already more susceptible to a number of conditions, including Alzheimer’s, Parkinson’s, suicide and subsequent TBIs. To do nothing – to ignore safe alternative therapies – is to make a decision fraught with risk. Faced with this existential dilemma, we chose to try for a better outcome. Military families of wounded heroes, who have already sacrificed so much, deserve no less.Joel Goldstein & Bart

 

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, Brainline.org, Adoption Today, and Military Special Needs Network. To learn more or to contact Joel: www.tbibook.com.513KpXRBWqL._SY344_BO1,204,203,200_

 

Thank you, Joel.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

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