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Hello, I would like to post my presentation to the listmembers to let me know if I am misstating anything. Thanks and good luck to all tomorrow! Greg "I have a dream, oops that was a Parkinsonian Nightmare!" Leeman Maine Parkinson's Disease Awareness Fund P.O. Box 11424 Portland, Maine 04104 USA Phone 207-771-0289 Fax 207-771-0289 Email [log in to unmask] April 10, 1998 Good afternoon, (WELCOME) We would like to thank everyone for the show of support today. Your presence means a great deal to all of people who fight a daily battle with Parkinson's Disease. Your participation helps to reinvigorate our spirit at a time of great potential for developing better treatments and a possible cure. We would also like to thank all those that offer valuable time in the advocacy of ending this devastating disease. (THE DISEASE) Parkinson's disease results from the death of pigmented nerve cells in parts of the brain that produce the neurochemical dopamine. These are areas where thought and movement are created an initiated. While the brain stem and spinal cord are the executioners of movement. When the cell degeneration reaches 80 percent tremors, muscle stiffness, loss of fine motor function and a whole host of troubling symptoms result. Although medication alleviates by masking some of the symptoms for a limited time, eventually an increased dosage level causes side effects. These side effects, mainly involuntary movements, called dyskinesias often times are more debilitating and bothersome than the disease symptoms. Although Parkinson's disease and Alzheimer's disease share some defective brain characteristics, they are biological opposites. Alzheimer's destroys the mind, with body movement and motor function intact. Parkinson's disease destroys a persons motor function, while leaving the brains ability to reason intact as a prisoner inside the debilitated body. The cause of Parkinson's disease includes many theories such as an abnormal gene, toxin or poison exposure or defect within the cells themselves. These theories are the subject of intense thought, debate, study and experimentation. A debate that, as little is ten years ago, was conceptually impossible and scientifically unprovable. Unraveling the mechanism to cell death of Parkinson's disease, will increase our understanding of the more complicated, withering mechanisms of Alzheimer's disease and the aging process itself. (THE PROMISING SIGNS) There are several signs pointing to better days ahead for Parkinson's sufferers. Whether it be through genetic research, neural tissue transplants, or neurotrophic proteins we are indeed on the cusp of the dramatic breakthrough we so long for. In recent years people with Parkinson's have benefited from the development of new drugs and promising surgical procedures. I myself have benefited greatly from unilateral pallidotomy. Through the Parkinson's list serve, a worldwide communication vehicle on the Internet, where patients are able to share their experiences, descriptions of marked improvement through these enhancements has us all thinking positively. However, promising signals should only be the beginning of a much greater emphasis of the undeniable fact that money invested in research pays huge dividends. (THE COST) The National Institutes of Health estimates that between 500,000 and 1,500,000 Americans are afflicted with Parkinson's disease, with 50,000 more diagnosed each year. Approximately 40 percent are under the age of 60, removing them prematurely from their jobs and reducing this country's productivity. With the prospect of Parkinson's victims living for many years, sometimes decades, in an incapacitated state requiring almost an equal number to be diverted from our workforce to be caregivers. The results are an astronomical cost of over $10 billion a year in health related expenses. Adding indirect disability related costs and lost productivity that figure grows to $25 billion dollars. To put that in prospective we will provide you with a little math lesson. If a person set aside $100,000 dollars for every day the week, it would take 27 years to reach $1 billion dollars. The touch of irony is that I developed symptoms in my 27th year. (COMPASSION) Hubert Humphrey once said, "the moral test of government is how the government treats those who are the dawn of life, the children; those who are in the twilight of life, the elderly: and those who are the shadows of life- -the sick, the needy, and the handicapped." It is time for Congress to stand up and honor this moral test and appropriate funds earmarked for Parkinson's disease, mainly the Morris K. Udall act. (LOCAL ISSUES) Many problems are felt locally in Maine that need solutions. Personal Care Attendants, a.k.a. PCA's, are paid only $6.25/per hour to provide care for people with Parkinson's. This is woefully inadequate. Not only does it compromise the quality of care it eventually erodes any continuity in an already disrupted life. There is inadequate information on what is available to Parkinson's patients in the form of drugs, surgical procedures, and the latest treatments. Communications of information are complicated by the reclusive nature of people with Parkinson's. This is a consequence of movement that is so uncontrollable it often leads to embarrassment. Movement, incurred as a side effect of L-dopa, usually in the form dyskinesias that make even the most gregarious people self-conscious. In public as the disease symptoms progress a vicious cycle forms. Many people with Parkinson's have debated possible remedies or at least partial solutions to these and many other problems facing the Maine Parkinson's community. We feel part of the answer should come from a local advocacy group. So today we are announcing the formation of the Maine Parkinson's Awareness Fund. Our goal is to reach out locally to the benevolent and empathetic amongst us who want to help those who have a need. We ask that before you leave today that you please make a donation to the Maine Parkinson's Awareness Fund in any amount you can afford. Your generosity and compassion will help produce a more livable existence for all those inflicted and imprisoned by this restrictive movement disorder. At this time, on behalf of all people with Parkinson's everywhere, we would like to make a request of all elected officials. Please let your conscience be your guide, as you set your priorities in regards to appropriations of funds to the National Institutes of Health, and more specifically to the Morris K. Udall act. Please be fair and account for how it affects America's quality of life. Thanks again for attending the first annual World Parkinson's Day. Let's hope there will not be a need for many more. May God Bless, Good Afternoon! -----Original Message----- From: Ivan M Suzman <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Friday, April 10, 1998 8:42 AM Subject: Re: List of activities update 5 (World's Parkinson's Day) >^^^^^^WARM GREETINGS FROM^^^^^^^^^^ >Ivan Suzman 48/11 [log in to unmask] >Portland, Maine land of lighthouses deg. F >*********************************************************** > >On Thu, 9 Apr 1998 20:52:39 -0700 kees paap <[log in to unmask]> >writes: >>Dear Listfriends, >>> >>Good news from Canada and from India. >>Denmark, Australia en Indonesia don't organize anything. >> >>Please don't E-mail me anymore but I suggest Ivan, because I will >>leave >>tonight to San Antonio, where I will attend the wedding of my >>brother-in-law (forgotten). > >Dear Kees and listmembers, > > > Thanks for offering me the job of posting the World Parkinson's Day >updates. > > I am too busy right now just trying to live one day at a time, and >trying to get ready for Maine's first World Parkinson's Day gathering, to >take on this job. Thanks for thinking of me.We need to find someone >else!! > >Would one of the other talented people on the Parkinson's List Please >STEP FORWARD, >and continue the job that Kees Paap has so beautifully been doing? > >IVAN >Sorry. >