Rolf B. Gainer, Ph.D., Diplomate ABDA, is the Chief Executive Office at Brookhaven Hospital and the Vice President of Rehabilitation Institutes of America. Dr. Gainer has been involved in the design and operation of treatment programs since 1977.

 

 

Michael Mason is author of the book Head Cases: Stories of Brain Injury and Its Aftermath, and is a Brain Injury Projects Manager at the Neurologic Rehabilitation Institute.

Penny Rott, MS, is a brain injury case manager for the Neurologic Rehabilitation Institute at Brookhaven Hospital..

October 28, 2008, 8:11 am

Caregivers, Stress and Physical Actrivity

We know that caring for a family member with a disability puts the caregivers at risk for physical as well as mental health problems. The duration of a disease or a disability is a strong predictor of potential mental health problems for the caregivers. Specific aspects of brain injury, such as behavior and cognitive problems affect caregivers more than the physical care.  A study from the Rosalyn Carter Institute in 2006 described caregivers as "the hidden victims" and reported that caregivers experienced "mental distress and poor health 48% more than non-caregivers". Caregivers are an important aspect of sustaining people who are living with a long term disabling condition. They are the resource that is the separation between living at home and needing institutional care. We need to look carefully are the needs of caregivers and address those needs through aggressive community based resources and services. A study summarized in the Med Page Today of October 28, 2008 addresses the problems faced by caregivers.

Click here to read the summary
http://www.medpagetoday.com/Geriatrics/GeneralGeriatrics/11477

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, 7:41 am

Beyond the Invisible: An Online Video

The Brain Injury Association of New York has created an outstanding mini-documentary about servicemembers who have sustained a brain injury.

Titled "Beyond the Invisible: Living With Brain Injury," the video takes you inside the private lives of military members and their family as they discuss the traumas they experienced in Iraq, and the subsequent challenges they face together.

From the moment you hear the voices of these men, you sense how profoundly altered their lives are. It's must see viewing–please forward this to your friends.

Click here to watch Beyond the Invisible

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October 27, 2008, 9:38 am

Foreign Accent Syndrome

Imagine waking up one day, and find that your voice is no longer yours. According to Seattle Times that is exactly what happened to Cindy Lou. According to the article Cindy Lou Romberg suffered from a brain injury in 1981 after which she suffered from chronic headaches and backaches, which she managed by going to a chiropractor. Then one day about a year ago she was feeling particularly bad, and went to a different chiropractor, and within 48 hours she was talking gibberish. The gibberish now comes and goes, however her voice is now an octave lower, and although she was born in the United States and has never visited a foreign country (with the exception of Canada), she has an accent that sounds more German, French, or Russian.

Cindy Lou has been diagnosed as suffering from Foreign Accent Syndrome, of which there have only been 50 or 60 cases verified worldwide. Seattle Times reports:

There’s no ironclad test,” says Jack Ryalls, an expert on neurologically based speech disorders at the University of Central Florida.

Typically, neurological damage — generally in the brain’s left hemisphere — is followed by the inability to use words properly or at all, then a gradual return of speech, albeit altered. Most cases develop within one or two years of the original injury, making Romberg’s case unusual.

While some researchers claim curative success using speech therapy, he says, “A person has to have some degree of conscious control” for it to work, and most victims seem not to. The few who regain their normal voices just do so with time, he says.

Our voices are part of our identities, which is why some victims of FAS are so devastated. Other people just shrug their shoulders, count their blessings and move on. The only evidence of Romberg’s former self is on her cell phone, where a bright, melodic voice asks callers to leave a message.

Click here to read the full article

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October 22, 2008, 3:40 pm

Job and Education an Antidote for Dementia?

The Washington Post recently reported on an Italian study that found “having a higher education and a mentally challenging job may help against the memory loss that precedes Alzheimer’s disease.” Cognitive and memory tests, as well as brain scans were conducted on 242 individuals with Alzheimer’s. 72 had mild cogn9itive impairment and 144 had no memory impairment.

Using a pre-test post–test method, the study found that “among those with the same level of memory impairment, those with more education and more mentally demanding jobs had significantly fewer brain changes and damage than those with less education and less mentally demanding occupations”

Dr Garibotto hypothesizes that there are two potential reasons behind the resiliency of the educated /exercised brain enabling it to “compensate for the damage and allow them to maintain functioning in spite of damage”. One is that the brain “could be made stronger through education and occupational challenges. Or, genetic factors that enabled people to achieve higher education and occupational achievement might determine the amount of brain reserve”.

While right now it could go either way, what’s it hurt to just exercise that brain? There are many things one can do to help sharpen memory and mental agility – one of which is the Brain Age electronic video game, it offers speed drills as well as memory drills, and charts your progress so you can see how much your brain is improving.

Click here to read the full article in the Washington Post

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October 15, 2008, 11:46 am

The Rest of the Country

Last week I had the honor of speaking at Spaulding Rehabilitation
Hospital in Boston, during a small luncheon they have with their
staff. Two of their case managers accompanied me on a panel, and the
clinicians were invited to ask us about our jobs.

One of the doctors asked me what they could offer patients who were
discharging from Spaulding and into communities where there were very
few services. I glanced over at Marilyn Spivack, founder of the Brain
Injury Association of America, who was in the front row, and she
raised her eyebrows knowingly. I told the clinician that Massachusetts
is regarded (along with New Hampshire) as one of the most privileged
states for brain injury services.

"If you guys think you have it rough," I said, "Imagine how the rest
of the country feels."

It was a sobering moment for me, realizing that even in a state that
has the best America can offer, available services are incredibly
difficult to access. It's enough to make you want to take
action–which is exactly what I encouraged each of the clinicians to
do.

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October 8, 2008, 12:42 pm

Brain Injury and Homelessness

In the Globe and Mail (Toronto) of October 8th a story appeared about brain injury being found in 50% of Toronto's homeless population and, of the homeless with a brain injury, 70% experienced their brain injury prior to becoming homeless. The results of the study conducted by Dr. Stephen Hwang and his colleagues was published in a recent edition of the Canadian Medical Association Journal. Our own long term outcome studies at NRI at Brookhaven and NRIO in Toronto indicate the increased likelihood for mental health and substance abuse problems, particularly in the critical period of the return to home and community. We also saw a high correlation of individuals with behavior, mental health and substance abuse problems to relationship failure and ongoing problems with peers, family and friends, often resulting in legal, employment and housing problems. The period of risk is extensive and not one which can be thought of in terms of weeks or months. In some problems, like suicide, the risk period can extend for fifteen years. 

As Dr. Hwang's study points out, people with brain injuries are more vulnerable. Dr. Anita Palepu from the University of British Columbia supported Dr. Hwang's observations with her own concerns for the risks faced by people living with a brain injury and the need for healthcare providers to identify the risk factors created by brain injury and to address these needs through effective treatment options.

Brain injury creates a lifetime of disability and the services need to be designed to effectively reach the person in the areas of their life where they are experiencing problems. I am always deeply troubled by the story of a client who is discharged from a program due to non-compliance when we know that compliance is a problem stemming from their injury.We need to think about realistic solutions "outside of the traditional box" to keep people with brain injury from experiencing problems which can be easily addressed.

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October 7, 2008, 11:18 am

Southwest Disability Conference

Last week I presented at and attended the Southwest Disability Conference which has grown in attendance and conference offerings over the years. The conference has become a nexus for issues related to disabilities and is highly consumer oriented. This year's special themes emphasized: Veteran's Returning with Disabilities; Autism and Asperger's Syndromes; At-Risk Families with Parents who have cognitive disabilities; Transition to Work for Youth with Disabilities and, of course, Brain Injury which was sponsored by the New Mexico Brain Injury Association. I attended a cross section of the available presentations and listened to speakers representing different perspectives. There was a significant Department of Defense and Veterans Affairs presence to address the needs of our soldiers returning with physical, psychological and spiritual injuries. A panel of military chaplains conducted a symposium on spiritual healing. A moving documentary by Alison Johnson: Gulf War Syndrome: Aftermath of Toxic Battlefield detailed the debilitating symptoms experienced by the First Gulf War veterans and the poor response of the Department of Defense and VA to provide assistance to these individuals. The conference itself serves to bring veterans living with disabilities together and the conference topics which dealt with injury and disability from military service became highly focused environments. The veterans in attendance spoke freely about their experiences and their realities. It was a counter-point to the presentation that represented a voice which needed to be heard.

What is so striking about the Southwest Disability Conference is the breadth of the issues and themes presented in the conference. The focus on self-help and consumerism is powerful and could serve as a model for other conferences. We have much to learn from each other and this conference is an excellent environment for learning in a level playing field where consumers and professionals can speak together. I look forward to being part of this conference next year.

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, 8:18 am

Brain Injury on the Homefront

Last week I had the chance to attend (and speak at) the North American
Brain Injury Society's annual conference. One of the things I like
about this conference is that they offer different "tracks" for
participants to follow: Blast Injury Institute, Lifelong Treatment,
and Legal Issues in Brain Injury.

I mainly followed the Blast Injury Institute's focus on brain injury
care and had the honor to listen in on Jim Schraa (Craig Hospital).
Schraa gave some incredibly good practical advice for advocates. Among
other suggestions, he insisted the advocates need to get in front of
legislative aides. Aides are more likely to champion issues behind the
scenes.

I also had a chance to speak with NABIS board member Deb McMorrow
(Mentor), who also served as a Blast Injury Institute panelist. She
told me that there are currently a lot of legislative efforts to
bolster and expand services within the VA, and that there are hopes
that military and civilian organizations will begin to collaborate in
more areas of research and education.

One of the biggest remaining obstacles that face veterans with brain
injury (as well as civilians) is dwindling coverage for cognitive
rehabilitation. Research demonstrates its efficacy and necessity, but
cognitive rehab is being shorn away from a number of insurance
carriers, as well as TRICARE.

If you're at all involved in veterans with brain injury, I encourage
you to heed Jim Schraa's advice and seek out the attention of
legislative aides to help get the message out.

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