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You sitting on your hands yet?
The first question another woman with young onset Parkinson's disease asked Gina Reilly on the Internet was whether she had the same embarrassing symptom: When she isn't busy, her hand shakes as uncontrollably as a nervous ingenue's.
"Normally, if I'm sitting at a table, I'd sit on my hands," said Reilly, a businesswoman in Morris Township. "We all do the same thing. People see your hand and think you need a drink, or your next fix," she said, laughing at the social awkwardness it puts them in.
Young onset Parkinson's disease, a non-fatal nerve disorder, struck Reilly six years ago. It came shortly after she twice won the U.S. Adult Gold Ice Dance Championship.
"If you look at my hand now, you can see that I'm due for my medication," she said recently at a rink. Reilly, 48, was sitting at a table, poised and ramrod-straight. But her right hand shakes with a self-conscious tremor. She needs different pills several times a day and was due for her next dose.
Her rebellious right hand, however, is the only outward sign that there is anything wrong with Reilly, a trim, former competitive athlete who had just spent a half-hour gliding around the rink with her skating coach, as gracefully as a skater half her age.
"When you don't have the dopamine, the movement becomes out of your control," she said.
Parkinson's, once called "shaking palsy," is caused when the right side of the brain stops making dopamine, a chemical needed for neural receptors that control movement. That often leads to balance problems, a shuffling gait, shaking, or rigidity.
More than a million Americans have Parkinson's disease, which is inherited in some cases and has been traditionally thought to afflict people 60 years and older. But increasing attention is turning to about 10 percent of Parkinson's patients who, like Reilly, develop what is called young onset disease before age 50.
Parkinson's in Pope John Paul II or former Attorney General Janet Reno may not be a surprise. But actor Michael J. Fox stirred public sympathy when he disclosed he had young onset disease since his early 30s and bowed out of his popular TV sitcom to battle it.
People tend to generalize the symptoms and treatment of Parkinson's disease, said Dr. Margery H. Mark, a neurologist at the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School.
"One thing I can say about Parkinson's patients is they're all different," Mark said. "Some patients come in and say, 'I want to take what Michael J. Fox is taking.' But I tell them his Parkinson's is different from yours or from the guy in the next room. Everyone has to be very individualized."
While 60 years old is the average age of Parkinson's patients, young onset can occur even before age 40. Younger patients tend to have a form that progresses more slowly, while those in their 70s have more problems with balance and gait and even could have cognitive difficulties, Mark said.
Physicians are beginning to regard Parkinson's more as a syndrome - a collection of assorted symptoms, such as fatigue and stiffness - than a disease, she said. Diagnosis of Parkinson's usually requires a neurologist to distinguish it from other disorders that may mimic it, she said.
People may come in complaining of weakness. "But with Parkinson's, they're not weak. Their muscle strength is normal, but they have a sensation of being tired, fatigued. Their limbs are stiff and slow. But they say, 'I'm weak,'-" Mark said.
"So you have to do a full neurological exam to determine whether it's a problem with peripheral nerves, or with muscles, or the tracks from the brain that are affected in strokes."
There is no real test for Parkinson's outside of a clinical exam. Measuring a patient's response to levadopa, the drug for Parkinson's, takes too long to show presence of the disease. Other brain chemical neurotransmitters besides dopamine are also involved in Parkinson's, so diagnosis is not simple, she said.
There are drugs to treat symptoms but none approved yet to cure the disease. Some patients who qualify medically will opt for surgical treatment of their symptoms. This includes electrical stimulation of structures in deep parts of the brain. "This will treat the symptoms and turn back the clock about five years," Mark said.
Though stem-cell research is usually touted as the road to curing Parkinson's, Mark says other potential therapies, such as drugs that interrupt cell degeneration, hold more promise for a cure quicker. Like Alzheimer's disease and diabetes, Parkinson's may be triggered by multiple genetic and environmental factors. Genetic research is the way to go, Mark said.
During the past decade, Dr. Lawrence I. Golbe, also a neurologist at Robert Wood Johnson, found a gene that mutates and causes proteins to "misbehave" and clump up in brain cells that make dopamine. The gene is located on the fourth of 23 chromosome pairs in human cells.
"So there may be ways of putting some kind of lubricant into the gene to keep it from clumping up, to prevent Parkinson's from happening in everybody," whether the disorder is inherited or not, Golbe said.
"In short, it's opened up a huge number of therapeutic opportunities that have to be tested in animals, then hopefully in people," he said.
Current research is trying to find what environmental factors, such as pesticides or heavy metals like mercury, or even lighter ones such as copper, might trigger protein clumping, he said.
"Figuring out how to prevent damage from occurring is more important than finding a cause," said Golbe, who is looking for genes that might modify the harmful effects of mutation.
Meanwhile, exercise is one of the best treatments for Parkinson's, in the young or old, Mark said. "Studies have shown that patients who exercise do better than patients who don't," she said.
"Why it works, we don't know. But it probably has something to do with the cliche 'Use it or lose it.' But you can't go on forever just on that. At some point, you need medication."
Though her competitive skating days are behind her, Reilly still practices regularly with her coach, Andy Stroukoff. During a recent lesson, the couple breezed up and down the ice, skating forward and backward in synchronized tangos, waltzes, quick steps, blues steps, swings, spins, rolls, leg extensions, and bending lay-backs.
"Think of yourself as a wineglass," Stroukoff instructed her. "If you tip it, the fluid will spill. So hold it by the stem."
"Whoa!" Reilly exclaimed, after doing a solo spin. "It's harder for me to skate by myself anymore, because Parkinson's affects balance.
"So, if I was a single skater, I'd be in trouble. I'm very dizzy. That was not a very good spin. It may have looked fantastic to you, but it's much more difficult to balance. So the fact that I'm an ice dancer turned out to be a very good thing."
Ballroom dancing, her other pursuit, is also good for physical and mental acuity.
"You can watch someone [with Parkinson's] shuffle out onto the dance floor, do a beautiful waltz, then shuffle off," she said. "It's an amazing thing. If you become sedentary, it'll become worse faster, and a lot of people sink into depression."
Reilly began developing symptoms in 1998, including dystonia, or sudden muscle spasm. She wrote them off as muscle strain, until she was diagnosed with Parkinson's last year. Her grandfather also had the disease.
"It never entered my mind that anything was wrong," she said. "It's such a subtle thing at first."
The Parkinson's hasn't progressed beyond her tremor, and it hasn't disrupted her work as a computer embroidery artist or her career as a semi-pro singer, which she first pursued as a young woman in New York nightclubs. Her husband, Jim, is an investment banker and an avid hockey player. They have a daughter, Caitlin, 16.
"My hope is maybe I'll just shake all my life," she said. "I'm the eternal optimist. I'll be fine, but if I'm not going to be fine, I'll deal with it. There are so many people worse off."
Reilly will sing and host a musical gala with celebrities, benefiting Parkinson's organizations, at 7 p.m. Friday at the Martinsville Inn. For information, visit musicalmagicgala.org or email greilly@yopa .org.
"When I tell people I have Parkinson's, they say, 'How can you have it? You're so young,'-" she said.
"I don't have many symptoms. I just shake in the right hand, which is very easy to hide, except when I get anxious or nervous. But that's one of the 'benefits' of Parkinson's: I'm allowed to shake."
For more information about Parkinson's, call the American Parkinson Disease Association at (800) 908-2732 or visit apdaparkinson.org or the Young Onset Parkinson's Association at yopa.org.
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(C) 2004 The Record, Bergen County, NJ. via ProQuest Information and Learning Company; All Rights Reserved