March 30, 2006, 10:08 am

Brain Injury Recovery Kit Reaching More Lives

At a conference last year, I had the pleasure of meeting Lisa Keller, an industrious TBI survivor who teamed up with Daytimer to produce a remarkable resource for brain injury survivors and their loved ones: the Brain Injury Recovery Kit (BIRK). Recently, she contacted me to let me know about the exciting strides the kit is making.

The BIRK is often referred to as “rehab in a box,” and offers a wealth of information, tools, tips, and strategies for brain injury survivors at all levels and stages of injury. By engaging the BIRK system, family members and survivors can start making progress on multiple levels. Already, the state of New Mexico is offering the BIRK to its TBI population, and talks are underway in Oregon to extend the BIRK to its residents.

From a case manager’s perspective, I couldn’t be more thrilled about the growing popularity of the BIRK–I recommend it to dozens of people a week. There are millions of survivors out there who can’t access services due to financial and geographic constraints. Thanks to the BIRK, these individuals now have a concrete resource that they can order and immediately begin making gains towards greater independence.

For more information about the BIRK, visit www.daytimer.com/birk

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March 29, 2006, 7:15 am

Travelling Through Tennessee

Work finds me in Nashville, TN, this week. Yesterday I had the honor of lunching with Marjorie Bristol, a healthcare attorney who works for a non-profit organization. She represents some hundred and twenty TBI survivors seeking treatment–a drop in the bucket given the thousands of Tennesseans who need brain injury services.

She told me that the governor has recently cut 290,000 people from Medicaid, so the prospects are truly grim for those seeking healthcare. Currently, the only state-sanctioned TBI program offered in TN is a database of all its survivors. That’s it. If you have a brain injury in Tennessee, then you get your name on list. There’s no waiver, no guarantee of follow-up, and not even the prospect of finding treatment anywhere in state lines. Consequently, many of the state’s mental health hospitals are teaming with inappropriately placed TBI survivors.

Bristol’s caseload is far past burdensome, but she continues to make slow strides by occasionally helping a TBI survivor find care outside of the state. Tennessee obviously needs more advocates like Bristol, so if you’re able to contribute time or money towards brain injury care in Tennessee, contact the brain injury association as well as the state head injury administrator.

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March 23, 2006, 10:13 am

Life Span Issues in Brain Injury

As more individuals survive severe brain injury and live for decades beyond their injury, we are seeing the effects of brain injury accross the lifespan. For many of us who started out in brain injury rehabilitation in the 1970’s, we are aging with the people we serve.

At the recent Iowa Brain Inujry Association Conference in Des Moines, I had the opportunity to speak with Randy Evans, Ph.D. who has a substantial history in research and innovative work in brain injury. Dr. Evans shared with me some data from the Veteran’s Administration Study involving 1776 W.W.II vets who experienced a brain injury in 1944-45. 548 of the individuals in the study had a traumatic brain injury as noted in their medical records. These individuals are now sixty years post-injury and likely to be in their eighties.

Dr. Evans presented this study with Brenda Plassman, Ph.D. at the recent 2nd Federal Traumatic Brain Injury Interagency Conferece and offered some memorable findings:

–The long term study is significant in terms of a substantially elevated risk of Alzheimer’s Dementia.
–The risk of depression increased for the veteran’s group with a lifetime prevalence rate of 18.5% among TBI survivors vs 13.4% in those without TBI. Also, the likelihood of depression was linked to severity of injury.
–While the prevalence of stroke (CVA) was not more common in those with wartime TBI, severe brain injury was associated with a higher stroke risk.
–PTSD was observed at a higher rate in individuals with TBI.In short, TBI created several significant risks for neurologic and behavioral health problems over the course of time.

We know what causes long term cognitive impairments: initial damage, further degeneration, decades of stress on remaining brain tissue, and the effects of aging on an injured brain. A brain injury does not automatically mean that the person will experience Alzheimer’s Disease, depression, PTSD or stroke, but it does indicate that these conditions have a greater likelihood of occurring. We also know that physical decline, the emergence of health problems, problems with community access and housing and social network problems are likely to affect the lives of individuals with TBI as they grow older.

Thousands of our veterans are aging with a brain injury. Vietnam era veterans living with a brain injury are now in their sixties, and a new group of injured individuals from the Iraq war are emerging. We also have a civilian population, who without the war-related injuries, are experiencing similar problems to the veteran groups as they age. Moreover, there are children who are injured and will live through their childhood and adult lives with the effects of a brain injury. The information regarding the lifetime issues experienced by individuals with TBI is here now. We need to pay attention to these individuals and develop the resources and services which they will need long after rehabilitation has ended.

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March 21, 2006, 9:01 am

Iowa BIA Conference Wrap-Up

Once again, Iowa’s Brain Injury Association Conference proved to be an invigorating and educational conference that offered insight into the many issues surrounding brain injury care. Here are some of the highlights from the past week:

–Marty McMorrow with Mentor kicked off the conference with a back-to-basics call for treatment that comes from the heart.

–Dr. Rose Collins offered a riveting look into the lives of soldiers returning from Iraq with TBI. Her talk brought home the gritty reality of blast injuries, and how they will affect our country in the years to come.

–Sharon Grandinette, M.S. Ed., shared information about helping children and adolescents with TBI. You can view her website at www.helpingkidsbrains.com

–Longtime attendies Peggy Reisher & Judy Harvey with Madonna Rehab in Lincoln, NE, provided me with running commentary throughout the conference and offered a fresh perspective on how they deal with TBI-related issues in the workplace. In summation: it helps to have a good sense of humor.

And finally, here’s a small offering of me and my jello-mold brain:

(hats off to Peggy for taking the pic).

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March 20, 2006, 10:16 am

Brain Injury in the Military: A Long Road Home

Rose Collins, Ph.D. of the Veteran’s Administration Polytrauma Rehabilitation Team at the Minneapolis VA Medical Center spoke at the Iowa Brain Injury Conference on March 17, 2006 in Des Moines. Her compelling presentation addressed the needs of individuals with traumatic brain injury and other injuries who are entering into polytrauma rehabilitation on their long journey from the front lines in Iraq and Afghanistan to their homes and families.

The incidence rate for traumatic brain injury in our soldiers serving in Iraq and Afghanistan well exceeds twice the rate of occurrence for Americans in civilian life. These young soldiers can survive due to highly trained military medics, forward positioned surgical teams, combat support hospitals and military medical centers, (Landstuhl in Germany) before their return to a military treatment facility in the U.S.,(Walter Reed) and then on to one of the TBI Polytrauma Centers. Dr. Collins reported that 40% of the Blast Injury survivors at Walter Reed sustained a TBI vs the historical TBI rate of 20% in combat survivors.

Dr. Collins’ patients are young men and women with severe brain injuries, amputations, burns, visual and hearing impairments, combat stress and other psychological issues. In her presentation she described the rehabilitation process for one such soldier and closed her talk with a video made by the soldier in which he spoke about himself, his injuries, recovery and future.

I was struck by the volumes of suffering experienced by our soldiers returning to the U.S. with severe injuries. The soldier in the video shown at Dr. Collins’ presentation apologized for his disabling conditions, his drooling, his blindness, hearing and mobility problems. I thought I should be apologizing to him.

I have worked in brain injury rehabilitation for over thirty years and have seen and worked with many individuals who have survived a severe brain injury. Dr. Collins’ presentation highlighted for me, and for most of the audience, those issues in brain injury rehabilitation that we don’t get to see in our civilian practices. The impact of severity, multi-system trauma, family and adjustment to disability are furthered by the issues of returning home from their military jobs and roles to a long process of rehabilitation and to an unknown future.

Our injured soldiers straddle two cultures: the military and the civilian communities to which they will return as disabled individuals. No matter what our political views are, these young people require our expertise, resources and support. We owe that to them, now and forever.

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March 14, 2006, 9:18 am

Iowa, Here We Come!

One of the best, most informative state-run brain injury conferences will be underway this week in Des Moines, from March 15-17th at the Hotel Fort Des Moines. It’s the Annual Iowa Brain Injury Association Conference, and it’s helmed by some of the most proactive TBI advocates in America.

This year’s presenters include ABI specialist Sharon Grandinette, Mentor’s Marty McMorrow, Randall Evans of the ABI Group, Rose Collins from the Department of Veteran’s Affairs, and our very own CEO, Dr. Rolf Gainer, who will be presenting “Suicide Attempts Following TBI” on Friday, March 17.

As an advocate for TBI survivors, I get a lot from attending the presentations as well as the exhibitor booths–it’s a great opportunity to find out what’s on the cutting edge of treatment and technology. If you’re in the area, we invite you to stop by our booth and ask as many questions as you’d like.

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March 9, 2006, 8:35 am

TBI Documentary A Must -See For All

While I was at the NASW conference in Albquerque recently, a social worker told me about a filmmaker named Laura Napier who had just completed a documentary about TBI survivors in New Mexico. I found myself immediately intrigued, so I tracked her down via email and ended up getting a chance to watch the documentary on DVD.

Every 21 Seconds, or Why I Scream at the Refrigerator is a soulful account of traumatic brain injury, told from the perspective of survivors. Napier lets the camera gently linger on survivors as they open up about their lives post-injury, and the result is a profoundly moving and inspiring portrait of brain injury in America today. Unlike other “survivor” films, Napier’s storytelling emerges from the inside of the injuries, providing us with unprecedented insight into the real issues that TBI survivors deal with every day.

Napier herself is a TBI survivor from a motor vehicle accident, which charges the film with an emotional force that could only come from genuine heartbreak, struggle, and tremendous strength. Ultimately, Every 21 Seconds is about courage and transformation. No blockbuster could ever come close to delivering such a true and unflinching account of TBI.

The details regarding distribution for Every 21 Seconds is being finalized, but if you’d like to find out how to get ahold of a copy, you can contact Laura Napier at: lavidacarnival [at] earthlink [dot] net.

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March 3, 2006, 8:46 am

15 Years Worth of Advice for Family Members

Tom McMahon is dad to a child with a traumatic brain injury. Usually his posts are an impersonal treat that reveals his colorful mind and interests, but recently he decided to write a bit of advice for people living with a disabled family member:

Here’s number one:

Some Run Away

I thought I’d start out with the most unpleasant reality first. That in times of real trouble, some people you thought were your true-blue friends or close family members you thought were of solid character can turn out to have the proverbial feet of clay. For whatever reason, they’re never around anymore. Why? I don’t know. But you have to get to the point where you worry about this about as much as you worry that your pet ferret can’t do fractions, which is to say not at all. Yeah, it hurts. But your not the first to stumble upon this disappointing fact by any means

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Click here to read “What I have learned in 15 years“

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March 2, 2006, 3:37 pm

Miner McCloy Still in the Dark

Fox news has recently reported that Randall McCloy–otherwise known as the sole surving miner from the West Virginia mining disaster–is still unaware that he is the only remaining survivor. To those of us familiar with anoxic injuries, it’s not a surprise that McCloy is suffering cognitive impairments.

McCloy’s accident happened in January and I thought the world had all but forgotten about him, as is often the case with TBI survivors. If you don’t believe me, try to find out what’s happening with Bob Woodruff, Doug Vogt, or Ariel Sharon. The media is only mirroring what happens to most survivors–attention is intense immediately after the injury, but support and interest wane to a depressing low in the months and weeks afterwards. In what should be a rallying effort by family members and friends, the rehabilitation period for many TBI survivors is a lonely and emotionally painful journey towards reclaiming a life of independence.

If you’re interested in TBI advocacy, start with the Brain Injury Association of America.

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