SCI Network April 2004 Newsletter

Spinal Cord Injury Network

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SCI CONNECTOR April 2004

SCI AND BONE DESITY STUDY SEEKS PARTICIPANTS

Spinal Cord Injury Network is collaborating with the National Rehabilitation Hospital, National Spinal Cord Injury Association, ILRU, and the Miami Project to Cure Paralysis on a five year grant on SCI, physical activity and secondary conditions. We will keep you posted on a regular basis on the goings-on and happenings of this NIDRR funded RRTC.

Following is another Research Project description from the SCI RRTC. The project has to do with the effect of an acute exercise intervention on prevention of bone mineral density loss in persons with spinal cord injury. Osteoporosis is a significant secondary condition that occurs soon after acute SCI and is directly related to the increased fracture risk seen in individuals with SCI. This increased bone loss can eventually lead to osteoporosis. In addition, the bone loss is characterized by heightened serum and urine calcium, which may contribute to other secondary conditions, such as kidney stones and hypercalcemia.

In this research project, an intensive lower limb exercise program has been developed using functional electrical stimulation (FES) in adults with acute motor complete SCI. Twenty-six participants who are within six weeks of acquiring their SCI will be randomly assigned to either a control group or an intervention group at the National Rehabilitation Hospital. The control group will undergo usual inpatient rehabilitation for their SCI. The intervention group will undergo usual impatient SCI rehabilitation, as well as have one hour of functional electrical stimulation (FES) to both legs five days a week for six weeks.

Bone density and muscle thickness will be monitored, and blood and urinary markers of bone loss will be measured at study entry, as well as three and six months post-SCI. With this information, changes over time will be compared between both groups. The RRTC researchers propose that this program will slow the rate of bone loss through FES, thereby diminishing the development of osteoporosis. Please contact Alison at 202-877-1358 or e-mail alison.m.lichy@medstar.net to enroll or to get further information.

FIRST GOLF MARATHON RAISES $20,000 IN PLEDGES

The Spinal Cord Injury (SCI) Network held its First Annual Golf Marathon, Links to the Future, on April 5th, 2004 at Tantallon Golf Course, in Ft. Washington, Maryland. The day was bitterly cold with forty M.P.H. winds. When folks arrived at the course, ice had formed around the edges of the water hazards. Even so, almost half the eighteen golfers completed fifty or more holes. Two golfers actually played one-hundred holes of golf.

Most, like Team Captain Jesse Parker, Jesse is a AK amputee, completed seventy or more holes of golf. Players continue to raise money for each hole they played; that amounts to very nearly $20,000 in pledges. To date, slightly more than half that amount is already in the bank. Monies raised will go to direct services that the (all volunteer staffed) SCI Network provides to people with SCI/D and other mobility impairing conditions.

The marathon is an event in which players, experts to newbies, attempt to play 100 holes in one day, raising money for each hole played. As you might imagine, there are special rules for a golf marathon. For instance, all par three holes may be played with multiple balls simultaneously, and a double bogie is the most strokes that a player must take on any hole. Two players, Janet Seaman and Bob Riddle completed 100 holes of golf.

Additionally, Janet Seaman & Bob Riddle (teamed with Charlene Fraizer), collected nearly $7000.00 in pledges between them. We think this was a great first effort; we are about to begin the preliminary planning for the second annual SCI Net work Golf Marathon, to be held early, but maybe not quite so early, next spring.

Special thanks to Jesse Parker, our Team Captain. Thanks also to our great team: Shimla Anderson, Dave Burds, Blair Childs, Ann Cody, Cindy Daniels, Ivory Johnson, Thom Kirk, Barry McFarlane, Debbie Parnell, Alfonzo Pinkney, and Sue Potts. Lastly, because we probably would not have even gotten started without the wisdom and patience of the National Spinal Cord Injury Association support team: Marcie Roth, Executive Director, and board members Eric Larson of Chicago & John Fioriti of Boston, we need to express our appreciation to them and to NSCIA.

SUPREME COURT RULES ON TENNESEE V. LANE

. By Mike Ervin, NSCIA e-news - www.spinalcord.org

Justice Scalia and Justice Rehnquist. Now there's a couple oxymorons for you. These two have faithfully been on the wrong side of Supreme Court decisions blowing holes in the Americans with Disabilities Act, along with their sidekick, Clarence "Silent but Deadly" Thomas. And it looks like they're at it again. Soon the Court will issue its ruling in the ADA case of Tennessee v. Lane. George Lane is a wheelchair user who showed up at his local courthouse only to find the courtroom in which he was supposed to appear was upstairs.

There was no elevator and when he refused the accommodation of being carried up by deputies, he was arrested for failing to appear. So he sued the state under the ADA. The state has had the nerve to challenge this case all the way to the top on the premise that Congress did not have the power to give people with disabilities the right to sue their states for money damages from discrimination under Title II Of the ADA.

As Michael Moore, Esquire, arguing on behalf of Tennessee before the Court in January, said "There was no evidence before Congress that the states were involved in a widespread pattern of violations of the Fourteenth Amendment rights of disabled persons when the ADA was enacted in 1990."

Moore could make the same argument about Tasmanian Devils. He could attempt to convince the judges that if they've never seen a real live one, they must not exist. Of course the people of Tasmania would know this is ridiculous since they see them every day every where. Paul Clement, Deputy Solicitor General for U.S. Department of Justice, countered Moore by pointing out that in preparing the ADA, Congress reviewed many stories of people with disabilities encountering inaccessible polling places.

This would certainly qualify as state-sponsored discrimination. But Rehnquist said, "How many of these instances did Congress find of people who were actually refused the right to vote?" And Scalia said, "Inaccessible voting place proves nothing at all. It just proves that the state did not go out of its way to make it easy for the handicapped to vote…… They're not saying you can't vote, they're saying we don't have facilities for you to get to the voting place." Translation: If you refuse to crawl or be carried up stairs to vote or go to court, don't come crying to us. And even if you were discriminated against, there must be hundreds or thousands of others being screwed over similarly before it counts.

God Bless Justice John Paul Stevens, who replied, "I don't know why one violation wouldn't be enough." What's needed here is a Supreme Court Disability Sensitivity Simulation Day. Make Rehnquist and Scalia spend the day in wheelchairs. Rivet them in good so they can't get out. And don't let them use the Supreme Court's accessible entrance. Let them be carried up the million front steps by beer-bellied, panting, profusely sweating security guards. If they're anything like me, by the time they get to the third step they'll be crying out for their mommies. And if they make it too the top they'll be so grateful for God's mercy they'll want to kiss the pavement. It will be a transformation of Scroogian proportions.

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