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Sit & Wait: Couple Dealing After Parkinson's Research Money Cut... BY CHRISTI MATHIS FOR THE SOUTHERN [Wed Dec 03 2003] PINCKNEYVILLE -- Marion and Bonnie Rushing love the view from the windows of their rural Pinckneyville home. But Marion Rushing, Southern Illinois University Carbondale Hall of Famer and former professional football player, had planned a more active retirement than watching the world from his window. Unfortunately, he was diagnosed with Parkinson's disease at the age of 46, and 21 years later, he's not physically able to do the hunting, fishing and outdoor activities he loves. Rushing is actually a success story as he battles the debilitating neuromuscular disease. But he and his family are concerned about state funding cutbacks for Parkinson's research and services that have enabled him to have a better quality of life than was ever expected after this many years with the disease. A year ago, Rushing underwent deep brain stimulant surgery performed by Dr. Joel Perlmutter at Barnes Hospital in St. Louis. He was awake throughout the surgery that placed stimulators in his chest and wired them to areas of his brain where they administer constant stimulus. "It's been very helpful," Bonnie said. The surgery is a fairly new treatment. She said her husband was able to cut his medication by two-thirds, to just about six different medications daily. Medication tends to lose its effectiveness over time in treating the disease, so additional medications are needed. The side effects -- including involuntary movements, overheating, sleeplessness and hallucinations -- can be horrendous, the couple said. "The research, the newer medications and the surgery have helped him stay active," Bonnie said with a smile clearly reflecting nearly 40 years of love and marriage. "Now it just seems like they're just on the verge of possibly finding a cure or something else big and they're cutting the funding. Just when they're starting to make progress they'll go backwards if they don't continue on with the research and everything like they have been. When he was first diagnosed, doctors said, 'Mr. Rushing, you'll have 20 good years.' It was 20 years last year and by then the symptoms were so bad. Now he had the surgery and he's doing so much better. He's still not out doing what he'd like to do -- fishing and all that, he's an outdoor person -- but he's so much better." As part of Gov. Rod Blagojevich's numerous budget-cutting measures recently, $1.65 million in state funding for three Alzheimer's disease centers and $375,000 for the Southern Illinois University School of Medicine's Parkinson's Disease Center were axed. In essence, the Alzheimer funding was cut in half and the Parkinson funding eliminated. The legislature completed a veto override this last month that actually restored all of the funding for Alzheimer's, but the Parkinson funding is gone. Phil Davis, associate provost for external and health affairs at the SIU School of Medicine in Springfield, said the Parkinson's Center was created two years ago as an outreach from the Alzheimer's program created close to 20 years ago. Davis said state funding cutbacks are even more significant than they appear because typically, "the state investment has been multiplied by a factor of 9, mostly in federal money, received for the programs." Dr. Rodger Elble, chairman and professor of neurology and director of the SIU Alzheimer Center, said the state funding has enabled them to hire Dr. Stanley Burns as a researcher and director and also to hire a nurse practitioner. This reduced greatly the months-long waiting list for Parkinson's patients to see specialists at the facility and also provided the expertise and research. A National Institutes of Health grant was received to participate in research on preventing or at least retarding the progress of Parkinson's in its very early stages. "That's what's mainly in jeopardy is the research program," Elble said. "One way or the other, we will keep seeing patients." But, along with research, other new programs will suffer, he said. Plans called for creation of a telemedicine program that would allow patients in Southern Illinois to access top-notch care providers in metropolitan areas for health care. That plan is "definitely in question" without the funding, Elble said. The Alzheimer's Center also works through numerous local health care agencies statewide to provide assistance in treatment, case management, education and family assistance and hopes had been to do the same regarding Parkinson's disease. The clinical project has worked well in allowing Alzheimer's patients and their families to get care and support in their own communities and the goal for Parkinson's was much the same, Davis said. "We are going to explore every avenue we can to see how we can continue to have a viable Parkinson's program," he said. "We had a lot of hopes, but it's going to suffer greatly," Elble said. The Rushings are far from alone in their battle with Parkinson's. Statewide, an estimated 210,000 people have Alzheimer's while current estimates are that there are at least 21,000 cases of Parkinson's, Elble said. He noted when the Alzheimer Center began officials estimated only about 100,000 cases but quickly discovered they were way low in their estimates. Likewise, he notes, "It's estimated half of all Parkinson patients are undiagnosed." Moreover, Elble said, recent research is finding more and more connections between the two diseases. Alzheimer's disease begins with memory loss and then escalates into loss of intellectual and cognitive function. Motor skills are usually preserved with only the most advanced and rare cases suffering loss of these skills. Parkinson's disease typically begins with tremor in the hand or foot on one side of the body and then spreads, progressing to affect balance and the entire body. Speech is affected and trouble swallowing follows. Initially, it was believed that no cognitive loss was involved but, especially in older patients, at least 30 percent do suffer some dementia, Elble said. Alzheimer's can only be completely confirmed via autopsy after a patient's death and Elble said research has found that up to 20 percent of those diagnosed in life with Alzheimer's are actually found to have Lewy Body Disease, a form of Parkinson's. Thus, some of the research and treatment involved in these diseases is interconnected, officials said. But, since state funding is particularly earmarked now for Alzheimer's, there won't be any Illinois money specifically for Parkinson's research and programs. That thought makes Bonnie Rushing shudder as she holds her 4-month-old granddaughter, Kenzie Jean Rushing, and proudly displays photos of their other granddaughter, 2-year-old Kaelan Hall. "They have come a long way with research in the last few years," she said. "If it weren't for the deep brain surgery he'd be totally immobile by now." Marion Rushing is quick to say that although he can't spend time hunting and fishing with sons Troy and Chad or visiting with daughter Pamela Hall as he'd like, things are still much improved due to research advances. Still, they pray daily for a cure. After all, the Pinckneyville native and star prep player earned an amazing 13 letters in basketball, football and track at SIU. The long-time record-holder in the javelin throw is not a sedentary man by nature. In 1959 he signed a $7,000 contract to play for the Chicago Cardinals. The team later moved to St. Louis. Rushing was drafted and spent 1960-61 in the army before resuming his pro football career. He relocated to the expansion Atlanta Falcon team and spent 21/2 years there before wrapping up his career with the Houston Oilers in 1968. Back in those days, the pay was low and Rushing returned to Pinckneyville in the off-season to work in the coal mines to support his family. He mined full-time after retiring from football. But, he retired from the mines before he planned because "he was afraid he might cause an accident because of the slow movement," Bonnie said. Bonnie spends a lot of time massaging her husband's tight limbs, trying to relieve the painful cramps, usually to no avail. For Bonnie, it's a labor of love for the man she announced she'd marry years before she ever met him. She laughs as she recalls that her sister was an SIU student and when visiting her, young Bonnie saw Marion's picture in a football program and announced, "That's the cutest guy I've ever seen. I'm going to marry that man." Bonnie clipped that handsome picture and carried it for three years in her billfold before they were introduced by a mutual friend -- actually a boyfriend of Bonnie's -- her husband laughs in his soft whispering voice. "She had no sense," he teases. "Yes, I did! I was the smartest one around," Bonnie replies with a smug smile. And while they aren't able to go out to eat or do much traveling, the Rushings are grateful Marion can still walk and enjoy his family and his view. They say they just hope there's a way to continue funding for the Parkinson's research that has gotten them so far and so close to an even better future. Davis said the legislators and governor could restore funding for next fiscal year if the public makes it a priority that they do so. In addition, private donations are welcomed for the programs at the Foundation and Development Office of the SIU School of Medicine, (217) 545-2955. [log in to unmask] 618-357-8391 SOURCE: The Southern Illinoisan http://www.southernillinoisan.com/rednews/2003/12/04/build/local/LOC002.html * * * ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn