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February 18, 1999 The Lincoln County News, Serving Maine and Lincoln County for Over A Century No. 10 A new resource for Parkinson's patients: Maine Parkinson Society Sue Cereste Maine now has a new organization that will function as a resource tool and support agency for Parkinson's Disease patients, as well as work to promote awareness of a health disorder that affects about 7000 Mainers and one million men and women nationwide. The Maine Parkinson Society (MEPS) was founded last June by Greg Leeman, 38, of Portland, a person with Parkinson's (PWP) and he was soon joined in the effort by friend and fellow Parkinson's patient, Karen Bardo of Alna. Bardo, who is making it a new life mission to help get this organization going, is the vice president of MEPS, which is currently operating out of donated office space in Bowdoinham. Parkinson's Disease is a chronic, progressive, presently incurable disease caused by the degeneration of the brain cells that produce the neurochemical, dopamine, which controls motor function. The cause is unknown, and patients suffer from a variety of symptoms including tremor, rigidity and stiffness, bradykinesia (slowness of movement) and impaired balance and coordination. Additionally, the drug commonly used to treat the disorder, when used over time has problematic side effects, one of which is dyskinesia, or jerking, involuntary movement. And eventually the drug begins to be less and less effective in controlling symptoms. Bardo, 45, was diagnosed in 1996 and has been on a steep learning curve since then to educate herself about the disease which is now a very intrusive part of her life. Although the average age of diagnosis for PWPs is 58, both Bardo and Leeman, diagnosed at age 30, are part of what some physicians think are growing numbers of younger people afflicted with the disease. As Bardo and Leeman know too well, it is not just a disease of the elderly - about a third of PWPs are diagnosed before age 50, with a possible 10-year lag time after the onset of symptoms. Another active participant in the new organization is Bardo's father, Harold Jones, of Augusta. Jones, a retired banker and politician, is helping the new group garner funding for start-up and operating expenses. MEPS is a registered charitable organization, incorporated in Maine, and was recently granted non-profit status. There are five other states that have Parkinson's societies and several national organizations, one of which has a Maine chapter, but nothing "home-grown" or full-time until now. Bardo and Leeman feel MEPS can provide a valuable centralized resource and referral center for Mainers with Parkinson's. They plan to establish a computer database of PWPs in Maine, prospective donors and friends; create a small reference library for lending; make available printed, informational material about the disease; act as a referral source for patients; and provide general support. The two intend to hold informational seminars for patients, their families, doctors and nurses, the media and the public, and keep up-to-date on current research and improved surgical procedures. Bardo and Leeman are in the process of designing and will maintain their own Web site which they estimate will be on-line in the near future. A informational pamphlet about MEPS, including facts on the disease, is being finalized and plans are in the works for a quarterly newsletter. Both Bardo and Leeman agree that much needs to be done to educate the public about the disease, as well as the medical community. Maine, like other mainly rural states, has few neurologists, particularly in the northern areas, so most patients see their regular doctors who often are not well versed in the symptoms of Parkinson's. There is no specific test for the disease, so diagnosis is based on detailed medical history and patient observation and, lastly, a drug trial. Both feel, along with Jones, that poor communication between doctor and patient is a major obstacle to early diagnosis. "One thing we need to try and do," Leeman said, "is emphasize the need for the physician to take the time to listen and try to understand the patient's perspective. "We hope to make physicians more aware of what to look for so people can be diagnosed earlier. And it's more for the patient's peace of mind and relief of symptoms as early diagnosis doesn't affect the progression of the disease." The MEPS pamphlet will be left at doctors' offices, pharmacies, hospitals, medical testing facilities and neurologists' offices. Included in the pamphlet is basic information about Parkinson's, the MEPS mission statement, a questionnaire, and information about an upcoming tulip bulb fund- raiser, as well as the second annual Maine celebration of World Parkinson's Day, to be held April 10 at Maine Medical Center in Portland. The April 10 celebration will feature a half day of activities and speakers in Portland and will be co-sponsored by MEPS. Sen. Olympia Snowe (R-Maine) has been invited to speak, but it is not yet known if she will attend. The agenda includes an overview of movement disorders by a neurologist and updates on medical and drug treatments as well as new surgical techniques. Break-out sessions on different topics will follow the speakers' presentations. Pre-registration will be necessary; more information about the event will be available in MEPS' March newsletter and by calling the MEPS office number, provided below. The tulip promotion, scheduled for June of this year, will feature sales of a special red and white tulip, similar to that created by a Dutch horticulturist and named after Dr. James Parkinson, the English physician who first described the symptoms of Parkinson's in 1817. MEPS has chosen the red and white tulip as their organization's symbol of hope that a cure will one day be found. The fundraiser is patterned after a similar one in Canada which has been highly successful both monetarily and as an awareness raiser. The MEPS pamphlet also provides information about APDA (American Parkinson Disease Association) support groups in Maine. The monthly meetings sometimes provide a formal program, but are often just a sharing of thoughts and information in an informal atmosphere. Pamphlets, books and video tapes are available. Bardo attends the Midcoast Parkinson's Support Group which meets in Brunswick and is run through Healthline and Midcoast Hospital. For more information on support groups, call 781-3070 or 771- 0385. How you can help Bardo and Leeman are hoping to attract enough funding to hire a part-time director for the group and pay their operating expenses. Their office space and use of office equipment was recently donated to the group by Fred Haer, and is located at Haer's company site. Frederick Haer & Co. makes electrodes, wires with microscopically fine needles, used in certain brain surgeries, including the pallidotomy (undergone by Leeman) for Parkinson's patients. "We are looking for money and advocates to help us plan, organize and develop our programs and funding, and sponsors to help with the costs of the tulip promotion," Bardo said. On a more basic level they are also hoping for people to volunteer their time and skills at the MEPS office. Needed are people to answer the phone and people who are comfortable with computers. Donations of books or other materials about Parkinson's Disease are also needed. Currently, MEPS has a diverse group of nine directors, including Bardo, Leeman, Jones, as well as a neurologist, pharmacist, lawyer, the director of social services at Maine Medical Center, and an assistant professor of nursing from St. Joseph College. If there is any person in the midcoast area who is interested in serving on the MEPS board, please contact Bardo or Leeman. Currently, the office is usually manned on weekends during the day, and sporadically during the week. There is a telephone equipped with an answering machine, so any caller may leave a message and either Bardo or Leeman will return the call. Visitors to the office are encouraged, but call first to make sure someone is there. "We are hoping to improve the lives of other people with Parkinson's by making them aware of what's available to them, such as drugs and surgical procedures. We want to offer some sort of social activities and let them know they are not alone," Leeman said. How to get in touch with MEPS The office is located adjacent to the town landing in Bowdoinham at 9 Maine St. (zip code 04008). In Maine, anyone wishing to get in touch with MEPS may call 1-800-832-4116, or call the local number, 666-8345. The current mailing address for the group is Maine Parkinson Society, P.O. Box 11424, Portland, 04104. The new Web site address is www.movers-shakers.org. An alternate, but currently functioning site is http://home.maine.rr.com/meps/, which will be linked to the new site. Additionally, people may contact Bardo via e-mail at [log in to unmask] or Leeman at [log in to unmask] [log in to unmask] [log in to unmask] maine_parkinson_society.html rev 1999-03-11 http://www.lcnews.maine.com/1999-02-18/maine_parkinson_society.html 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: POBox 171 Almonte Ontario K0A 1A0 Canada EMAIL: [log in to unmask] URL: http://www.geocities.com/janet313/