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SCI/D Conferences in Las Vegas
Director of Social Services Jerome Kleckley (left) enjoys a light moment with Damon Rozier, who gave a presentation on the role of sports in psychosocial rehabilitation following spinal cord injury at the Tri-Association Conferences of SCI/D health care professionals in Las Vegas last month.
Misc.
PRESIDENT’S MESSAGE: Research and You
DIRECTOR’S NOTES: An Excellent Program
LETTER FROM THE EDITOR: Knowledge Transfer
RESEARCH FRONT: October 2006
Hughes Syndrome or MS?—Controversy Over UK ‘Misdiagnoses’
High Caloric Diet May Prevent ALS Progression
Study Discovers Risk Factors Associated with Neural Tube Defects in China
Olfactory Cell Transplantation Shows Potential in SCI Recovery
POLITICAL NEWS: [...]
Ensuring the best available medical care for our members was one of the primary purposes for the formation of our organization 60 years ago, and it continues to be one of our highest priorities. Activities to support this effort include: valuable research accounting for close to $60 million; creation and sponsorship of three organizations of professionals who devote most of their time to spinal cord care (the American Paraplegia Society, the American Association of Spinal Cord Injury Psychologists and Social Workers, and the American Association of Spinal Cord Injury Nurses); continuous advocacy for adequate funding for medical care through appropriate government bodies [...]
I write this column upon returning from Las Vegas, where nearly 1,000 physicians, nurses, psychologists, social workers, physical therapists, and occupational therapists treating persons with spinal cord injury or disease (SCI/D) attended an educational conference sponsored and coordinated by United Spinal Association. Although our organization has spent more than $27 million sponsoring this major educational effort over the last 20+ years, this was the first time I attended in an official capacity.
I commend the leadership of the American Paraplegia Society, the American Association of Spinal Cord Injury Nurses, and the American Association of Spinal Cord Injury Psychologists and Social Workers (Indira Lanig, [...]
I was very fortunate to be able to attend the Tri-Association Conferences in Las Vegas last month, which you can read about on page 10. Though I’ve been reading about them in our newsmagazine for years, this was my first close-up view of these United Spinalsupported meetings for doctors, nurses, and psychologists and social workers who care for people with spinal cord disorders (SCD). I wish you all could have been there.
Hughes Syndrome or MS?—Controversy Over UK ‘Misdiagnoses’
An article published in the August 22nd edition of the UK-based Times reports that hundreds of people with Hughes syndrome may have been misdiagnosed with multiple sclerosis (MS), however, health care professionals caution against drawing false hope from these findings.
The article states that, “Patients in whom MS was diagnosed-the disease affects about 85,000 people in Britain-have experienced seemingly miraculous recoveries on learning the true cause of their illness [Hughes syndrome], in some cases after decades of ignorance. Paralysed patients have regained the ability to walk and others have overcome debilitation, headaches, confusion and short-term memory loss [...]
UN Panel Approves Treaty to Protect the World’s Estimated 650 Million People With Disabilities
On August 26, a United Nations General Assembly panel passed the UN Convention on the Rights of Persons with Disabilities-a treaty to expand the rights and freedoms of persons with disabilities throughout the world. The full 192-nation General Assembly is expected to approve the treaty during its next session, which opens in September. The treaty is expected to take effect in 2008 or 2009.
The treaty will require nations that sign it to adopt laws prohibiting discrimination on the basis of disability. Currently only 45 nations have laws that protect [...]
Giving Care
I’m grateful that you are now including articles on the family caregiver (Giving Care, by Linda R. Cronin, August 2006). Once the invisible partner, family caregivers are now being seen as the backbone of the Caregiving industry. We here in Arizona are working furiously on changing the face of the industry.
Through standardizing the training for the entry-level home and community based worker, we’ve facilitated a partnership with providers and community colleges to do training, a portable credential for those who complete the training, and we’ve urged the state agencies to develop a position that will coordinate all funding sources for [...]
Jonathan Wolpaw, MD, surveyed the state of brain-computer interfaces
in his keynote address to the American Paraplegia Society.
Spinal cord health care professionals make this year’s conference in Las Vegas one to remember, setting the bar high for next year’s meetings in Orlando.
By Rob Ingraham and Chris Pierson
“I never thought I would wax sentimental about the Riviera,” said American Paraplegia Society (APS) President Indira Lanig, MD, at the beginning of the first session of APS’s 52nd conference at the Riviera Hotel in Las Vegas last month, “but this week, I do find myself waxing sentimental. Coming here [...]
United Spinal has spent nearly $60 million on research into virtually all aspects of spinal cord medicine.
By Terry Moakley
In 1948, the Board of Directors of our founding group, Eastern Paralyzed Veterans Association, voted to give the fledgling National Paraplegia Foundation (NPF) a loan of $5,000 toward research for a cure for spinal cord injury. Eventually, this loan was forgiven and the NPF became the National Spinal Cord Injury Association. That occasion, however, represents our first active involvement in Spinal Cord Injury (SCI) research.
Some 25 years later, this organization made the decision to conduct our own fund raising program. As our [...]
Some states have been slow to ensure that voters with disabilities have equal access to the process.
By John P. Herrion
A ballot-marking device for people with disabilities is demonstrated at United Spinal headquarters. All voting machines are required to be accessible after January 1, 2007.
In 2002, President Bush signed the Help America Vote Act (HAVA) into law. HAVA provides federal funding for states to improve election administration and replace outdated voting systems. Its provisions require education for voters concerning voting procedures, rights and technology, and training for poll workers and volunteers to effectively administer the voting process. Other obligations under [...]
By Tamar Asedo Sherman
October is National Disability Employment Awareness Month, a time to increase the public’s awareness of the contributions and skills of American workers with disabilities. This is not something new that came into being with passage of the Americans with Disabilities Act (ADA) in 1990, but began in 1945 as one week and was expanded to a month-long focus in 1988. Despite the ADA’s guarantee of freedom from discrimination in employment, only 32 percent of Americans with disabilities aged 18 to 64 are working, compared to 81 percent of those without disabilities, according to the National Organization on [...]
By Elizabeth M. Treston
A scene from Krankenhaus Blues at the Visible Theatre in New York City.
New York City restaurants and bars are teeming with actors and writers. They all have dreams of making it to Broadway. They call it their “craft.” I find actors to be traveling on a different plane. They are always observing, finding in the mundane a comical scene or dramatic license few of us can envision. They are able to virtually touch emotion. They place their fingertips right on the edge of your heart and make it race or slow down with their ability to bring you [...]
By Ziggi Landsman
More and more powered wheelchair and scooter users are pushing their chairs out to the limit and most often they are coming up short. By necessity, power wheelers require increased range (distance) from their wheelchair systems these days. But being able to go long distances if you don’t have the juice to get back sure as heck will make you more dependent than independent.
Diminished battery life and decreased range are an unpleasant power-wheeling fact of life. Over time and as the batteries and other system components get worn, your range may diminish. Or, your wheelchair may never have had the [...]
By Ed Lash
Whether we personally have multiple sclerosis (MS), have a friend or relative with MS, or are a medical professional involved with MS, we have all developed a philosophy about the disease. We’ve developed that philosophy through personal experience, from our reading, from talking to and observing others, finding out what the experts say, getting advice from doctors or other professionals, and relying on our own instincts. All these experiences and more help us to develop a personal attitude about MS which can carry us through the rough spots.
In addition, our lives before MS have contributed greatly to that philosophy by [...]
By Kathleen M. Muldoon
Yvette Silver yvettesilver.com
Every year when October and Halloween roll around, I get to thinking about masks and costumes in general. I’ve always loved dressing up in these, pretending I’m someone or something else. I wouldn’t want to always wear them, because I like myself just the way I am. So I masquerade only once in a while, just for the fun of it.
Early on, though, our ancestors who lived in caves wore masks for far more serious reasons, such as warfare and tribal initiations. Some primitive humans even wore fuller costumes, including masks painted like an animal and [...]
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