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This is a multi-part message in MIME format. --------------F3E8339EB87471C8576ED8EA Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit Good morning Barbara, You've touched on a couple of key issues. The first one is of equal importance as the second one. The quality of health-care we have been provided with is woefully inadequate. There's such a lack of uniformity in treatment and a general sense of apathy amongst the public. It would seem as though we're started to make headway on these issues. Yesterday Curt over the weekend I talked with several members of the Portland Newspapers. I think we are going to see some coverage from this. I will include will include in this post a letter by fax to the Newspapers editor Curt Hazelit. It may be something people can draw from to develop letters to provide the voice we lack. It is time to continue to forge forward with the enthusiasm you always display. Because it is contagious and it keeps many like myself going everyday until we find a cure. The following is the correspondence I spoke of earlier: Maine Parkinson's Society P.O. Box 11424 Portland, Maine 04104 207-771-0385 Fax: 207-771-0289 May 5, 1998 Curt Hazelit Portland Newspapers Dear Curt, Thank you for taking the time to listen to me today. I'm sure you get plenty of requests like mine. I hope you find the following to be news worthy enough to find its way into your paper. I will try to provide a couple different angles to cover. The first one is the start-up of a nonprofit organization specifically to benefit Parkinson's Disease sufferers in Maine. I will cover that with this correspondence. The other 2 can be included in any interview provided. The second angle would be my life since Parkinson's threw monkey wrench into it about ten years ago. The third could focus on the young Parkinsonians located in the state of Maine. Parkinson's Disease is a movement disorder caused by the degeneration of brain cells that produce dopamine, the neurochemical controlling motor function. By the time 80 percent of those cells stop functioning, symptoms of stiffness, tremor and slowness of movement begin to emerge. The conventional treatment for Parkinson's is a 30 year old drug commonly known as L-dopa which attempts to replace the missing dopamine with an artificial substitute. It usually restores function to a certain extent and it may at first seem like a sufficient and beneficial drug. But it works inefficiently, it produces side effects, and eventually it does not work well at all. As the dopamine cell degeneration progress, it stymies automatic movements needed to walk, talk, swallow, even move at all. The idea behind the nonprofit was one borne of frustration. Frustrations from seeing local Parkinson's patients not get proper and adequate information, treatment and support. All the national organizations for Parkinson's Disease earmark most of their funds for research and lobbying efforts. There has been some money to organize local support groups. These groups are setup to provide emotional support and educational support through meetings once a month. It barely scratches the surface as there are only a little over 100 members statewide. There are an estimated 7000 people with Parkinson's in Maine alone. There are 1500 people with Multiple Sclerosis in Maine. Currently there are not any movement disorder specialists in Maine. There are also not any Parkinson's specialists in Maine. There are not any neurosurgeons that perform any of the currently accepted surgical options for Parkinson's disease. I would be willing to bet that there are not many neurologist in Maine who know which neurosurgeons in New England are available for these procedures. The variety of drugs used for treatment in Parkinson's disease add to the confusion. It is difficult, even when you keep daily charts, as most of us do, to find a smooth drug regimen. It truly adds up to a roller coaster ride that leave patients in an emotionally drained state. There is also the problem of insufficient funds provided for care givers through Social Security disability coverage. Currently care givers, probably the most important provider in a person with Parkinson's disease's life, get a wage of $6.25 per hour. This is woefully inadequate. Untrained, inadequate and non-loyal are words I have heard mentioned describing the people that this wage attracts. Heavy turnover ratios also remove the necessary continuity to eliminate any added disruption in already disruptive life. Uncontrollable movements, speech problems and facial mask tend to make people with Parkinson's feel self-conscious and often leads to reclusiveness. This adds to our lack of visibility, mobility and voice necessary to get attention in a political system dominated by lobbying groups that excel at these very attributes. For as a wise man once said "the squeaky wheel gets the grease." We hope by providing some help in answering these local problems we will improve the quality of life of people with Parkinson's in Maine. Through improved education, providing a supplement to care givers and adding social activity we intend to achieve solutions to these problems that face local Parkinsonians. Our first Maine Parkinson's Society Board of Directors meeting is tomorrow night, May 6. Hopefully this will provide enough initial information to peak your interest and invite us to help you provide a story of us. Thanks for your time, Maine Parkinson's Society Greg Leeman President --------------F3E8339EB87471C8576ED8EA Content-Type: text/x-vcard; charset=us-ascii; name="vcard.vcf" Content-Transfer-Encoding: 7bit Content-Description: Card for Gregory E. Leeman Content-Disposition: attachment; filename="vcard.vcf" begin:vcard fn:Gregory E. Leeman n:;Gregory E. Leeman email;internet:[log in to unmask] x-mozilla-cpt:;0 x-mozilla-html:FALSE end:vcard --------------F3E8339EB87471C8576ED8EA--