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..

November 27, 2006, 1:38 pm

The Making of the Invisible Man

Recently I spent a night at an upscale airport area hotel. As the normally bustling hotel was empty of travelers due to the Thanksgiving holiday, I had an opportunity to observe the details of hotel life which are usually obscured by the frenetic environment.

While I was having an early breakfast, a man with a movement disorder came into the restaurant. He was immediately set upon by several staff who hustled him off to a remote table. When he elected to dine from the breakfast buffet, these same staff shadowed him at a distance, but never interacting. Another individual brought his food choices to his table from the buffet where the “shadowing” individuals placed his food in a location on the other side of the table, barely within his reach making his attempt to eat an impossible task.

When he would periodically engage in an involuntary movement of his torso, head and arms, they would back away to a ten foot perimeter until his movements would subside and then reform their ranks to surround his table.

He was dressed in business garb and obviously was no stranger to travel. Yet the personnel in the hotel’s restaurant felt obligated to screen him from the public and, in essence, make him invisible. As a professional who works with individuals with disabilities to enhance inclusion, it was striking that this individual was made subject to isolation on the basis of his movement disorder. I was disappointed to see that making a person invisible remains society’s response to an individual with a disability.

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, 10:11 am

ABI Network Conference in Toronto

I attended the ABI Network Conference in Toronto over the Thanksgiving holiday. The conference theme was: Brain Injury and Beyond: Looking Back, Thinking Forward. The conference was extremely well-organized and filled with valuable presentations throughout the two days. The conference organizers scheduled keynote speakers each day to highlight the theme and stress specific aspects of brain injury for survivors, family and professionals.

The conference began on Thursday morning with Donna Ouchterlony, MD addressing the history and future of neurorehabilitation in Toronto and Jane Gillett, MD speaking about the state of the art now and in the near future. Ms. Karlene Nation, a Toronto television celebrity, spoke about her recovery from a near fatal pituitary tumor. Ms. Nation brought humor and insight into the issues of her recovery and brought a powerful focus on the need for information about injury and recovery.

On Friday, Marcel Dijkers, Ph.D., from Mount Sinai School of Medicine in New York, spoke on the importance of using subjective and objective measures to effectively examine the rehabilitation and outcome processes. Later that day, Charles Tater, MD, Ph.D., a noted Ontario neurosurgeon spoke about the prevention of brain injuries among athletes. Mr. Nick Kypreos, a former National Hockey League player and now Hockey Analyst for a Toronto network, spoke about his personal experiences with a sports related brain injury.

The ABI Network conferences manages to bring together speakers from all aspects of brain injury rehabilitation from acute medical rehabilitation to community. This year’s venue included topics which included: addiction, visual problems, complex care, mental health problems and the special needs of children with ABI.

I felt honored to be able to contribute my presentation on Rehab Outside of the Box: Lifespan Considerations for Individuals with Brain Injury to the conference. The ABI Network sponsors a conference every other year in Toronto. This year’s offering was an exceptional opportunity to learn from a wonderful conference faculty.

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November 16, 2006, 8:12 am

Inspiring Story of Father & Son

Sports Illustrated ran an article sometime ago about “Father of the Century” Dick Hoyt. Hoyt’s son, Rick, experienced an anoxic brain injury at birth. They encountered just about every nightmare many families go through in the post-injury process, but things took a turn for Dick once he realized Rick’s passion for sports.

Dick began entering races and competitions just so he could include his son:

Eighty-five times he’s pushed his disabled son, Rick, 26.2 miles in Marathons. Eight times he’s not only pushed him 26.2 miles in a Wheelchair but also towed him 2.4 miles in a dinghy while swimming and Pedaled him 112 miles in a seat on the handlebars–all in the same day.

Dick’s also pulled him cross-country skiing, taken him on his back Mountain climbing and once hauled him across the U.S. On a bike.

Click here to read more about the Hoyts and view a video of their accomplishments.
(Thanks to Neal Flannery of Mentor ABI for the link!)

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November 15, 2006, 10:48 am

IA BIA Newsletter Sets Great Example

The Brain Injury Association of Iowa never fails to impress me with its proactive approach to education and information. I just received a copy of their electronic newsletter “Waypoint” via email, and it’s packed full of information and energy.

In the issue, they discuss programs and services available to Iowans with brain injuries, they provide statistics on the numbers of people served, and they discuss pertinent issues regarding the Department of Health and IA Medicaid (Title 19). To top it off, they offer reminders about the BIA’s community services.

If every state chapter of the BIA were as organized and active as Iowa’s, we would see a radical increase in the quality of life for all brain-injured Americans.

Click here to read Waypoint.

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November 8, 2006, 6:55 am

Tuesdays with Marilyn

Yesterday morning, I had the honor of having breakfast with Marilyn Price Spivack, founder of the Brain Injury Association of America. We sat at a table overlooking Boston Harbor, and we talked about a range of brain injury related topics spanning from the war in Iraq to the various obstacles, trials and triumphs brain injury survivors have experienced in the past several decades. It was truly inspiring to hear her perspective on so many issues.

One of Marilyn’s regrets involves the fact that the term “brain injury” has become a commonly accepted term in the public instead of “head injury.” From a clinical standpoint, the term “brain injury” makes sense because it is specific. But from a survivor’s standpoint, the term carries a tremendous stigma. Marilyn admits that “brain injury” is now inextricable from our vernacular, but she nevertheless bemoans the stigma that plagues the diagnosis.

It is now our job to remove the stigma ourselves. As individuals somehow concerned with TBI issues, we need to encourage, facilitate, and promote an understanding that brain injury is treatable, and that survivors continue to make gains throughout the course of their lives. One way we can do this is to invite professionals from the Brain Injury Association into our workplaces educate us about brain–or head–injuries.

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