Bridge Back from Brain Injury Despair

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Posted on 23rd May 2008 by Gordon Johnson in Uncategorized

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In 1997, Becca Martin and I created https://waiting.com. It is certainly the most important thing I have done in my career. One of the most important contributions of that page was that its Bridge from Despair was the first internet collection of stories from those who had suffered the tragedy of brain injury on the internet. The internet was young then, and people were just beginning to discover the value of the connection it creates.

Yesterday I got this story, and I thought this blog would be a good place to tell this story, a story we will probably add to https://waiting.com/waitingbridge.html

Dear Mr. Johnson,

10 months ago I had a serious car accident and was in coma for 1 week. I had 3 brain-bleedings and 2 brain contusions. While I was in the coma my parents were with me and spoke to me. My father is German and we live in Germany, my mother is English. And I think she spoke a lot in English with me, because since the coma I often think in English. I am very, very grateful to them that they were by my side. This is the most important thing in the world. The love of your parents. You feel it and you know that they are with you, although you are in the coma. To give this deep love is the most comforting and the most beautiful thig you can do to the person you love. And to know that there are people who don`t look at you like doctors look at their disabled patients is comforting. I want to thank you very much for your work. You really help the people. If you come back, sort of return to the world, it isn`t easy at all to talk to people about this time. Mostly they don`t understand, how could they?

I had just one possibility to get to know another person with a near death experience. And this was so different from mine. I don`t remember anything concerning the accident. And I even lost months of memory before the accident, but I can recall my near death experience. I saw multiple universes in higher dimensions. I`m sorry, I don`t know why I am telling you this. Maybe because I don`t know anyone I could talk to about this. Since I am reading books about the quantum-physical possibility of multiverses I feel a bit reliefed, because I know now, that there`s a scientific explanation for what I saw. But I know that every physicist I`d talk to about this topic would bring me to the booby hatch.
I know, that I was very lucky, that I can think again.

The neurologist couldn`t explain my improvement. Although I have problems remembering things, I want to finish the exams on the university in Munich. It might sound queer, but after I have been hating the woman who ran into me far too fast (and sometimes I still hate her and try not to do it) I thought that following Kant`s categorial imperative and wishing a peaceful earth for everyone, I hope that I can release the hate. And I am grateful that I was able to go through this near death experience.

You give the people hope, information and the feeling that one can talk about the accident. Thank you!

Lisa
alchwarizmi@web.de
Thank you Lisa for allowing me to post your story on this blog.

UW Helicopter Crash Kills Three Near LaCrosse, Wisconsin

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Posted on 12th May 2008 by Gordon Johnson in Uncategorized

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When we first created https://waiting.com in 1997, we were working with a trauma nurse from Froedtert Hospital in Milwaukee, Wisconsin in organizing and fact checking the page. At the time, I had asked her what the biggest break through which had occurred over the years in saving lives for severe brain injury. I had expected her to say the CT Scan which allows doctors to see the killer of increased intracranial pressure before it kills, or some other imaging or pressure related device. She surprised me with her answer: Flight for Life helicopters.

It was her belief that it was the Flight for Life Helicopters that rushed severely brain injured persons to the regional trauma center where she worked, that enabled all of the rest of modern medical science to intervene before death, or before more brain damage occurred. As being old enough to have watched every episode of MASH, it was easy for me to grasp the importance of what she was saying.

Ironically, I didn’t appreciate until I started doing death and brain injury cases from the aviation liability end, just how much those doctors and nurses who staffed those Flight for Life helicopters, risked their life to save the brain injured. Saturday night, three more died in this valiant cause in a helicopter crash near LaCrosse, Wisconsin. Dead are Dr. Darren Bean, nurse Mark Coyne, both of University of Wisconsin Hospitals and the helicopter pilot, Steve Lipperer. For more details, click here.

Today, all of those in the brain injury community should have a day of remembrance for the brave medical personnel and pilots who risk their life to save so many from death and further disability. Each time you see a Flight for Life, say a salute or a prayer for those who serve on board. Perhaps we can all plant a tree or a flower in honor.

Brain Injury Association Urges Support for Wounded Warriors Act

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Posted on 8th May 2008 by Gordon Johnson in Uncategorized

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From the Brain Injury Association of Wisconsin:

Dear Friends:

Take Action!
Urge Your Senator to Cosponsor The Caring for Wounded Warriors Act of 2008
BIAA (Brain Injury Association of America) has endorsed The Caring for Wounded Warriors Act of 2008 (S. 2921), legislation introduced on Monday, April 28 by Senator Hillary Rodham Clinton which would increase support for family caregivers of servicemembers with TBI. Several recommendations made by BIAA during the legislative drafting process were incorporated into the bill.

BIAA encourages you to urge your Senator to sign on as a cosponsor of this important legislation.

The bill would require two pilot programs to be implemented through the Department of Veterans Affairs, improving the resources available to those caring for returning service members with TBI.

The first pilot program, which would provide for training, certification, and compensation for family caregiver personal attendants for veterans and members of the Armed Forces with TBI, is very similar to a provision in last year’s Heroes At Home Act of 2007, which BIAA also strongly endorsed.

The second pilot program would leverage existing partnerships between Veterans Affairs facilities and the nation’s premier universities, training graduate students to provide respite care for families caring for wounded warriors suffering from TBI.
To urge your Senator to become a cosponsor of S. 2921, click on the ‘Take Action’ link in the upper right corner of this email.

The Brain Injury Association of Wisconsin and the Brain Injury Association of America support this legislation.

If you have trouble with the “Take Action” button at the top, please let BIAW know. To “Take Action” visit www.biausa.org. Click on Policy & Legislation, then Legislative Action Center, and then Take Action.

Sincerely yours,

Pat David
Brain Injury Association of WI
For those not in Wisconsin, your Senators and Congressmen can be found at http://www.senate.gov/ and http://www.house.gov/

Brain Injury Association to Hold Caregivers’ Conference

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Posted on 7th May 2008 by Gordon Johnson in Uncategorized

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Caregivers’ Conference

The National Brain Injury Caregivers’ conference will be held in Dallas, TX on June 6-8, 2008 at the Westin Dallas Fort Worth Airport Hotel. The conference provides, caregivers of a person with a brain injury, support and guidance.

The conference will feature numerous medical professionals, over 25 experts and Lee Woodruff, special guest and best selling author. Lee Woodruff is the wife of Bob Woodruff, who suffered a brain injury in the Iraq War. His story is well chronicled, see for example: http://abcnews.go.com/WNT/Story?id=2904214

The conference is presented by The Brain Injury Association of America (BIAA). BIAA was founded in 1980, as an organization that supports individuals that are affected or individuals that have someone close that has been affected by a traumatic brain injury, by providing information and education.

Other speakers:
Joseph C. Richert
Chair, Brain Injury Association of America
President & CEO, Special Tree Rehabilitation System

Gregory J. O’Shanick, MD
President/Medical Director, Center for Neurorehabilitation and
National Medical Director, Brain Injury Association of America

Thomas Kay, PhD
Director Neuropsychology, Carmel and Associatates

Sarah Wade
Spouse of Injured Veteran

John Corrigan, PhD
Director, Ohio Valley Center for Brain Injury Prevention and Rehabilitation

Michael Howard, PhD
Clinical and Rehabilitation Psychologist, Lecturer
Biomed General Corporation

Janet Tyler, PhD
Director, Kansas TBI Project

Julie Peterson-Shea
Parent of child with brain injury

Lisa Silver
Transition Assistance Advisor, West Virginia National Guard

Peggy Keener
Parent of Person with Brain Injury

Faye Eichholzer
Spouse of Person with Brain Injury

Cheryl Amoruso
Sibling of Person with Brain Injury

Richard P. Bonfiglio, MD
Medical Director, HealthSouth Harmarville

Mike Davis, CBIS-CE
Neurological Case Management Associates

James Mikula, PhD
Neuropsychologist, Private Practice

Carolyn Rocchio
Caregiver of Person with brain injury

Laura Schiebelhut
Director of Public Policy, Brain Injury Association of America

Tim Feeney PhD
Executive Director, School and Community Support Services

Planning for the Transition from School Services to Adulthood
Linda Wilkerson, MSEd
President, Minds Matter LLC

Janet Tyler, PhD
Director, Kansas TBI Project

Visual Changes after Brain Injury
William Padula, OD
Director, Padula Institute of Vision Rehabilitation

Vocational Options After Brain Injury
Brandy Reid
Team Leader/Vocational Evaluator, Pate Rehab Dallas, TX

Kellie Manderfeld
Clinical Manager, Pate Rehab Dallas TX

Bill Ditto
Director, New Jersey Division of Disability Services


Tina Trudel, PhD
President/COO, Lakeview Healthcare Systems, Inc.

Susan H. Connors
President & CEO, Brain Injury Association of America

For further information:
http://biausa.org/livingwithbi.htm

TBI Act Signed into Law

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Posted on 4th May 2008 by Gordon Johnson in Uncategorized

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From the Brain Injury Association:


Brain Injury Association of America
Policy Corner E-Newsletter – May 2, 2008
A weekly update on federal policy activity related to traumatic brain injury
__________________________________________________________________

Dear Advocates:

This week marked a major legislative victory for the brain injury community, as President Bush officially signed into law legislation reauthorizing the TBI Act (S. 793) on Monday, April 28! Congratulations to all BIAA state affiliates, advocates, and national stakeholders who helped make TBI Act reauthorization a reality. To view a copy of BIAA’s official press release applauding this major accomplishment, please visit our website at http://www.biausa.org/policyissues.htm.

In other exciting news, BIAA proudly endorsed The Caring for Wounded Warriors Act of 2008 (S. 2921), legislation introduced on Monday, April 28 by Senator Hillary Rodham Clinton which would increase support for family caregivers of servicemembers with TBI. Several recommendations made by BIAA during the legislative drafting process were incorporated into the bill. A copy of BIAA’s Letter of Endorsement for S. 2921 will be available shortly on our website at http://www.biausa.org/policyissues.htm.

Also this week, a report was released by the Department of Veterans Affairs Inspector General which found that the VA is not providing the necessary standard of support and long-term follow-up assistance needed by veterans with TBI and their families.

In addition, after the House of Representatives passed by a veto-proof margin last week important legislation which would place a moratorium until March 2009 on several harmful Medicaid regulations (H.R. 5613), the fate of the bill was left up to the Senate. Earlier this week, Senate Majority Leader Harry Reid (D-NV) attempted to bring the bill up on the Unanimous Consent Calendar, but this attempt was blocked by Senator Coburn (R-OK). Now there is an effort to get the bill included in the FY 2008 Supplemental Appropriations bill. BIAA continues to strongly endorse H.R. 5613 and supports efforts to include the bill in the FY 2008 Supplemental Appropriations bill.

As a final note, BIAA is waiting to see if Congress will be able to establish a budget this year before sending out its Legislative Action Alert on FY 2009 TBI Appropriations. There is speculation that Congress may indeed be able to achieve a budget agreement in the upcoming next few weeks, and BIAA’s Appropriations Action Alert will be sent out shortly thereafter.

*Distributed by Laura Schiebelhut, BIAA Public Affairs Manager, on behalf of the Brain Injury Association of America; 703-761-0750 ext. 637; lschiebelhut@biausa.org

The Policy Corner is made possible by the Adam Williams Initiative, Centre for Neuro Skills, and Lakeview Healthcare Systems, Inc. The Brain Injury Association of America gratefully acknowledges their support for legislative action.
__________________________________________________________________

President Bush Signs TBI Act Reauthorization Bill Into Law

This week marked a major legislative victory for the brain injury community, as President Bush officially signed into law legislation reauthorizing the TBI Act (S. 793) on Monday, April 28! Congratulations to all BIAA state affiliates, advocates, and national stakeholders who helped make TBI Act reauthorization a reality.

BIAA issued a press release applauding this major accomplishment, noting that achieving successful reauthorization of the TBI Act has been BIAA’s biggest federal legislative priority this year.
BIAA President and CEO Susan Connors said, “TBI is recognized as a signature injury of the conflicts in Iraq and Afghanistan. The programs authorized by the TBI Act play a critical role in improving the nation’s ability to meet the needs of individuals with brain injury, military and civilian alike.”

This major policy accomplishment simply would not have been possible without the tremendous efforts of BIAA state affiliates, advocates, and collaboration among national stakeholders, as well as the leadership of numerous Members of Congress and the dedicated efforts of their staff members.

In particular, BIAA expresses profound appreciation for the leadership efforts of Senator Edward Kennedy, Senator Orrin Hatch, Representative Bill Pascrell, Representative Todd Platts, Representative John Dingell, and Representative Frank Pallone, all of whom played critical roles in ensuring the progress of this bill.

To view a copy of BIAA’s press release, please visit our website at http://www.biausa.org/policyissues.htm.

BIAA Strongly Endorses The Caring for Wounded Warriors Act of 2008

In other exciting news, BIAA proudly endorsed The Caring for Wounded Warriors Act of 2008 (S. 2921), legislation introduced on Monday, April 28 by Senator Hillary Rodham Clinton which would increase support for family caregivers of servicemembers with TBI. Several recommendations made by BIAA during the legislative drafting process were incorporated into the bill.

The bill would require two pilot programs to be implemented through the Department of Veterans Affairs, improving the resources available to those caring for returning servicemembers with TBI.

The first pilot program, which would provide for training, certification and compensation for family caregiver personal attendants for veterans and members of the Armed Forces with TBI, is very similar to a provision in last year’s Heroes At Home Act of 2007 (S. 1065/H.R. 3051), which BIAA also strongly endorsed.

The second pilot program would leverage existing partnerships between Veterans Affairs facilities and the nation’s premier universities, training graduate students to provide respite care for families caring for wounded warriors suffering from TBI.

Note: The legislation specifies that the curricula for the TBI Family Caregiver Personal Care Attendant Training and Certification Program “shall incorporate applicable standards and protocols utilized by certification programs of national brain injury care specialist organizations.” The legislation further specifies that the VA should also use such applicable standards and protocols in providing training for graduate student respite care providers.

A copy of BIAA’s Letter of Endorsement for S. 2921 will be available shortly on our website at http://www.biausa.org/policyissues.htm.

VA Inspector General Releases Report Criticizing TBI Care for Veterans

Also this week, a report was released by the Department of Veterans Affairs Inspector General which found that the VA is not providing the necessary standard of support and long-term follow-up assistance needed by veterans with TBI and their families.

The report, which was conducted at Senate Veterans Affairs Committee Chairman Daniel Akaka’s (D-HI) request, found specifically; “While case management has improved, long-term case management is not uniformly provided for these patients, and significant needs remain unmet.”

A copy of the report can be found at http://www.va.gov/oig/54/reports/VAOIG-08-01023-119.pdf.

TBI Support Group – Mint Julip

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Posted on 2nd May 2008 by Gordon Johnson in Uncategorized

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From one of our favorite former clients:

I had a good time at our TBI support group meeting today. It was a small group with only about 6 of us. Drake has changed their rules and does not allow us to serve or bring refreshments. We are only allowed to have them if we order them from Drake directly, which our TBI group can’t do since it does not have any funds.

So, I told our local TBI contact person that I would like to share with the group, the therapeutic value of growing mint. I brought several plastic baggies with mint plants along with the directions on How to Grow Mint in a Container Garden. I also shared with them the therapeutic value of making something with the mint….like Non-Alcoholic Mint Juleps. Pulling out all of the necessary items and the directions, I asked the group to help me figure out what we needed to do.

We worked on a variety of skills at the beginning of our meeting. Cognitive skills like gathering together necessary materials, figuring out what materials we should distribute to everyone first, reading and following directions, sequencing. Physical skills and coordination involved in scooping ice out of a container with a ladle and placing it into a cup, using tongs to grab the mint sprigs and place in their cups. One member new to the group said the mint sprig should be placed in the top of the straw…so we had the added challenge of using very fine motor skills! Social skills like enjoying each other’s company, “clinking” our plastic cups together and sharing our hopes for this year. Another member came in late, so we re-tested our memory as we worked together to make a Mint Julep for her.

Today’s group was a rewarding experience for me. I was able to do a skill I used to do prior to my TBI on a smaller scale. It was fun and I felt great! And now I have to take a nap and recover.

Cindy
And the recipe:

TBI (ALCOHOL-FREE) MINT JULEP
Ingredients
  • 1 cup water
  • 1 cup white sugar
  • _ cup (or more) fresh mint leaves, chopped
  • Crushed ice
  • Prepared lemonade
  • Fresh mint sprigs, for garnish
Directions

To Make Mint Syrup:
  • 1. Combine water, sugar and chopped mint in a pan. Bring to a boil and stir until sugar has dissolved.
  • 2. Turn off burner and set pan aside for about an hour to cool down.
  • 3. Strain out mint leaves by placing strainer over the container you are using for your mint syrup. (If the holes in your strainer are large enough to allow some of the leaves to go through, place a paper towel or coffee filter inside your strainer.)
  • 4. Refrigerate mint syrup.

To Make Drink:
  • 1. Fill cup with ice. (Crushed ice works best)
  • 2. Fill cup about _ full with prepared lemonade.
  • 3. Pour a small amount of the mint syrup into your cup of lemonade. Taste and adjust according to your preference, adding more lemonade or more mint syrup if desired.
  • 4. Garnish with a sprig of mint and a straw. Sip slowly and enjoy. (Especially good on a hot summer’s day.)
  • 5. Optional: Make some sun tea and use in place of lemonade.
–Cindy Schneider

Thanks Cindy.