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FROM: The Atlanta Journal and Constitution December 25, 2001 Tuesday, Home Edition SECTION: Features; Pg. 1C HEADLINE: Healthy Living: Parkinson's steps outof shadows BYLINE: CHARLOTTE MOORE " The roster of people we know with Parkinson's disease has gone from zilch to (1) Michael J. Fox, (2) Janet Reno and (3) Muhammad Ali. And the list goes on. We don't really know them --- like what their least-favorite flavor of ice cream is or whether they sleep on their sides or backs. But we do know them. They came into our lives a long time ago. Over the years, we watched them, laughed with them, cheered them on, supported them. When they fell ill, we wept for them. And because we knew them, we began to pay attention to the disease. Once upon a time, a man stumbling down a street was perceived to be sloppy drunk. Now a first impression is likely to be that he's suffering from Parkinson's disease. Before, the phrase neurological diseases was associated with Alzheimer's, cerebral palsy and Lou Gehrig's disease. Now, Parkinson's disease is customarily listed as a prime example of a neurodegenerative disorder. It was nearly two centuries ago that English physician James Parkinson attempted to label a neurological disorder that most notably caused its victims to tremble involuntarily. Parkinson dubbed it "shaking palsy." It would take scientists and physicians decades to come to terms with the debilitating disorder, an ailment they discovered was brought on by the degeneration of dopamine-producing brain cells. One million Americans are believed to have Parkinson's today. The exact cause of the disease is still unknown. Its effect on the nervous system most often results in uncontrollable shaking as well as muscle stiffness, loss of balance, slurred, monotonous speech and, in some cases, constipation, depression and difficulty swallowing and writing. Most Americans know more today about Parkinson's disease than they did 10 years ago. We're more willing to sympathize with people who have the disease. We're more likely to send a check or volunteer time to a local Parkinson's disease association. Arguably, it is the affliction of the highly visible, celebrated few we feel we know well that has boosted the nation's efforts to find a cure for the victims we will never know. Regular folks hit, too Ken Fight. Marvin Berger. Margaret Miller. Steve Naylor. Dr. Don DeBra. Chances are, you've never heard of these metro Atlantans. But if you support Fox, Ali or any other celebrity in public campaigns against Parkinson's disease, then indirectly you support these five strangers. They, too, have Parkinson's. Fight, former district manager for J.C. Penney, was diagnosed with Parkinson's symptoms nearly seven years ago. "There's no definitive diagnosis except brain autopsy," Fight said, "and I'd prefer not trying that just yet." Berger prides himself on once upon a time regulating the entire city of Chicago as a supervising sergeant on the police force. "Now I can't even shave," he said. DeBra, diagnosed with the disease in 1997, used to work as an endocrinologist specializing in glandular diseases. He knew something was wrong when he began experiencing leg tremors. "I'd be examining a patient on the examining table, then turn around and fall down," DeBra said. "There was trouble with my speech, I had trouble sleeping, I just overall didn't feel well." Fight, Berger and DeBra are members of the American Parkinson Disease Association's Atlanta chapter, which is headed by Berger's wife, Barbara. The group is nearly 500 strong and includes victims and their caregivers. About 30 of them gathered last week at Westminster Presbyterian Church for a Christmas potluck and support group meeting. They are a congenial bunch with an obvious connection. Some talked about the film "Ali" --- opening today in theaters nationwide --- and spoke graciously of the film's subject, a man-Goliath who once boasted superhuman qualities of floating like a butterfly and stinging like a bee --- an assertion few people challenged. Muhammad Ali as ally But that was then. Now the physically impaired Ali is a mite less intimidating. He shakes. His mobility is strained. His speech is labored. In Ali's case, the disease decimated what remained of one kind of prizefighter but initiated another. To the ordinary Parkinson's sufferers, like those who gathered at Westminster Presbyterian Church, go the spoils. "Celebrities have the eyes and ears of Congress. When they testify, they can move members of Congress in ways that others cannot," said Dr. Mahlon DeLong, a Parkinson's specialist and chairman of the neurology department at Emory University School of Medicine, an institution renowned for its study of neurological disorders. The National Institutes of Health referred Ali to DeLong nearly six years ago. "Muhammad is committed to many causes that are meritorious and have an impact on people and their lives," DeLong said. "He embraced Parkinson's disease rather late as a cause. I've been with him and his wife, Lonnie, at congressional and societal meetings. Celebrities are a powerful motivator and make a powerful impact --- not only on us, but on the whole funding mechanism and with public awareness. I don't think we'd be as far along as we are with our research were it not for them. The importance of this cannot be [overstated]." Other advocates of Parkinson's disease funding and research agree that celebrity sponsorship is priceless. "It has a tremendous result," said Joel Gerstel, the New York-based APDA executive director. "When we first organized in 1961, nobody knew what Parkinson's was. "Today, as a result of Muhammad Ali, Michael J. Fox, Janet Reno and, just recently, [journalist] Michael Kinsley, the media draws attention to the disease. That increases the support and the funneling of money to fund research to find a cure." The APDA sponsors 65 chapters, including the one in Atlanta, and more than 800 support groups nationwide. Robin Elliott, executive director of the New York-based Parkinson's Disease Foundation, said the foundation reported a 100 percent increase in the number of gifts received --- from 21,000 in mid-1999 to 42,000 in mid-2000 --- one year after Fox went public with his Parkinson's diagnosis. "The celebrity connection is the greatest single factor in that increase, I'm convinced," Elliott said. "You can't buy that kind of asset. They have performed miracles for our cause. "We're deeply sorry and sad that it's taken this, but consider what the celebrities are able to do. The fact is, without a celebrity presence, your disease is possibly looking at less money, less visibility and fewer scientific leads." New spotlight on hope The Michael J. Fox Foundation raised $10 million this year to fund research into finding a cure for Parkinson's, said the foundation's executive director, Deborah Brooks. "The opportunity to increase visibility is what helps in terms of increasing funding and awareness for a disease," Brooks said. "When committed, intelligent and energetic people focus their attention --- regardless of celebrity status --- is when the highest impact seems possible." Margaret Miller and Steve Naylor are not celebrities. In addition to Parkinson's disease, Miller is suffering from osteoporosis and osteoarthritis and recently was diagnosed with breast cancer. Naylor was forced to retire from his job as a post office maintenance technician after his Parkinson's diagnosis 10 years ago. The disease has robbed them of their sense of smell, and Naylor is part of the small percentage of victims who suffer chronic aches and pains. Both spend much of their time doing all they can to help raise awareness and funding to find a cure for the disease. "I wouldn't want anybody to have this disease," Naylor said. "But I think Michael J. Fox is amazing and Ali shows a lot of courage. I know how much effort it takes to just keep moving." Miller suspects that when she was diagnosed in 1993, it was difficult to think of ever finding a cure for Parkinson's disease. But that was then. "Now there's definite hope," she said. "Because of the combined efforts of celebrities as well as dedicated individuals like these courageous people right here in this group, we are so close to finding a cure --- I just know it." GRAPHIC: Photo: Lynn Fight helps her husband, Ken, with his meal at a Parkinson's support group party at Westminster Presbyterian Church. / PHIL SKINNER / Staff Graphic: PARKINSON'S DISEASE: AT A GLANCE > Parkinson's is a progressive disorder of the central nervous system affecting more than 1 million Americans. > Parkinson's typically strikes men and women older than 50 but also is diagnosed in younger people. As life expectancy increases worldwide, experts project an increasing number of people will be victims of Parkinson's disease. > Parkinson's typically is treated with the drug levodopa. Once it reaches the brain, levodopa is converted to dopamine, which replaces the substance not present in sufficient amounts in Parkinson's patients. Levodopa does not prevent changes of the brain typical of Parkinson's disease and may produce side effects. New drugs recently approved offer a wider choice of medications; more are being studied." "For more information > The Atlanta chapter of the American Parkinson Disease Association operates in conjunction with the Emory University School of Medicine. The National Institutes of Health recently awarded the Emory University Center for Research on Complementary and Alternative Medicine a five-year grant and three individual research grants totaling $5.7 million. Researchers are studying the use of magnetic stimulation to relieve Parkinson's disease-related depression, the use of Valerian root to treat sleep disturbances and the effect of Chinese exercises such as tai chi and qi gong on motor disabilities associated with Parkinson's disease. For more information about the Atlanta chapter or to make a donation, contact Barbara Berger at 770-979-3495. On the Web > The American Parkinson Disease Association --- www.apdaparkinson.com > The National Parkinson Foundation --- www.parkinson.org > Parkinson's Disease Foundation --- www.pdf.org Source: American Parkinson Disease" ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn