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hi all karen bardo and i are "playing catch-up" on the history of the Maine Parkinson Society's development janet ----------------------------------------------------------------------- One Man's Nightmare Helps Parkinson's Sufferers: The Maine Parkinson Society is Dedicated to Providing Information on the Disease Monday, August 3, 1998 - Gregory Leeman's dream vacation had turned into a nightmare. Stuck in the Australian outback during the middle of summer, he was hot, tired, stressed out and had overmedicated himself with the drugs he uses to control his Parkinson's disease. Now, paranoid and hallucinating, Leeman was convinced there was some kind of reptile in his friend's bed. As soon as he regained his senses, Leeman vowed that upon his return home to Portland he would research every possible way to improve his quality of life and prevent something like this from happening again. But doing that turned out to be a lot harder than he expected. Leeman was stunned by the lack of readily available information on the latest treatments for Parkinson's disease. He learned that the state doesn't have any physicians who specialize in Parkinson's or movement disorders, even though there are more than 7,000 Mainers who have been diagnosed with the disease. And there are no neurosurgeons who perform any of the currently accepted surgical options for treating it. So Leeman got together with some friends he met on the Internet and they founded the Maine Parkinson Society, a new organization that is already coming up with ways to improve the lives of Mainers with Parkinson's. "I think there's a huge need in Maine in general for at least the better dissemination of information", says Leeman, 37, who is human resource director at Blue Rock Industries. "I'm going to make sure that we get information to all the people we can, pass along to them what all their options are." One of the group's first projects is to develop a series of regular seminars where Mainers could ask out-of-state experts about their medications or learn about the latest research or treatments for Parkinson's. The group has already connected with Parkinson's specialists from clinics at Harvard and Massachusetts General Hospital who have agreed to help. Parkinson's disease is a chronic, progressive neurological disorder caused by a loss of the brain cells that produce the chemical dopamine. Dopamine helps direct the body's muscle activity, so when it's gone the result is tremors, stiff and rigid muscles, slowness of movement, loss of fine motor function, and impaired balance and coordination. As Parkinson's progresses, a person remains as bright as always but experiences difficulty walking, talking and performing simple daily tasks such as writing or putting on clothes. "Without the dopamine you can tell your brain to do it, but the message doesn't get to the muscles", Leeman said. "So what happens is no matter how hard you concentrate or try, it's very difficult." Although the average onset of the disease occurs around age 60, there are more and more young people getting the diagnosis. Doctors aren't sure why. "There's a whole lack of knowledge out there about Parkinson's", said Harold Jones of Augusta, whose 45-year-old daughter (Karen Bardo) was diagnosed with the disease about two years ago. "It's kind of like the quiet disease, basically because people think it's older people" who get it. There are more people living in Maine who have Parkinson's than people who have multiple sclerosis, muscular dystrophy and Lou Gehrig's disease, Jones notes. And as the baby boomers age, the numbers will only grow. Yet there are few educational resources available on the local level and even less fund raising. There are some support groups available for people to talk about their problems, "but it's not enough", Leeman said. Only a fraction of Mainers who have a Parkinson's diagnosis attend local support groups - fewer than 200 people, he said. "It's very difficult for people to organize these groups because of their problems", Leeman said. "There's a need locally to get these people out of their houses and give them some activity, something beyond the walls they look at each day. (Parkinson's) tends to drive people to reclusiveness sometimes." That's what was happening to Leeman before he found a surgical procedure that gave him some relief from his symptoms and "basically was a turning point for me in my life." Leeman's body began showing signs of Parkinson's disease when he was just 27 years old. It began with shoulder problems. Then his writing became nearly illegible. His movements were slow, or sometimes he'd simply "freeze." He'd smile, but no one could tell. "If I went to put my arm through a sleeve," he recalls, "sometimes it took me a minute and a half to get it started." The worst symptoms were on his right side. Doctors initially suspected a brain tumor, multiple sclerosis or Lou Gehrig's disease. Eventually, they figured out that it was Parkinson's and put Leeman on medication. After the first few years, the medication didn't work quite as smoothly and Leeman's condition began to deteriorate. The medication also came with sometimes-embarrassing side effects - sudden, jerky movements that could make him kick people or spill drinks on them. Like many other Mainers, Leeman eventually was forced to go to Boston to see a specialist. "But it just got to the point where he could only do so much," he said. "We both got discouraged. He would have to change appointments occasionally, and it was a hassle to have to worry about when you would have to go down there." As his condition grew worse, he realized he might have to give up driving altogether. And he started to become more reclusive because he was so self-conscious about his problems. After his disastrous trip to Australia, Leeman began researching his options - all on his own, because he couldn't find a good, local resource to provide information. He decided to try a pallidotomy, a surgical procedure that involves drilling a hole in the skull and using a probe to deaden the portions of the brain that are causing problems. The patient remains awake, guiding the surgeon to the correct parts of the brain by talking about the symptoms he's experiencing while the probe is inside his skull. "It took about a couple of hours and the results were instantaneous," Leeman said. Leeman's symptoms are still bad enough that he can't work a full day - and he may eventually have to have more surgery. But he is much better off than he was before the surgery. Leeman and the other members of the Maine Parkinson Society don't want other people with Parkinson's to go through the trouble he had just to find the treatment that's right for them. The group has started a newsletter and web site that features pictures and personal stories of Mainers with Parkinson's. It also plans to develop a lending library and resource center that will have a list of surgical options and regional treatment centers, with advice on how to go about finding the one that's right for a particular patient. "We're going to provide some literature on how to apply for Social Security disability, how they can get local respite care and how they can get personal care attendants," Leeman said. At $6.25 an hour, it's hard to find good, reliable in-home care, so Leeman hopes the Maine Parkinson Society might be able to subsidize attendants for some people in the future, or at least provide them with some proper training. The group has five people on its board of directors - Leeman is president - and hopes to hire an executive director some day. It has applied for non-profit status and will soon begin holding grassroots fund raisers. Social events will follow. "We're going to try to help these people have somewhat of a social life again," Leeman said. Caption: PHOTO: color: Staff photo by Jack Milton: [Gregory Leeman of Portland, who has Parkinson's disease, formed Maine Parkinson Society after he had trouble finding information on his condition.] By Meredith Goad, Staff Writer Copyright 1998 Blethen Maine Newspapers, Inc. Press Herald Online: http://www.portland.com/ ----------------------------------------------------------------------- Greg Leeman's Hole-in-the-Head Gang Story: http://www.geocities.com/janet313/pienet/leeman/ The Maine Parkinson Society: http://www.geocities.com/maineparkinsonsociety/ janet paterson, an akinetic rigid subtype parkie 53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd TEL: 613 256 8340 SMAIL: PO Box 171 Almonte Ontario K0A 1A0 Canada EMAIL: [log in to unmask] URL: http://www.geocities.com/janet313/