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Hello all, The following, though a little long, was sent to local papers here in the very far north of California. I hope some of them will print it. Some of my "numbers" may be off, but they should be as close as are necessary for this piece. Please let me know what you think of my writing. Also, if you want to send it to anyone else please do so. If it should get published somewhere I would love to receive a copy or clipping if possible. 01 July, 1998 RELENTLESS PROGRESS toward helplessness and a cure You have just been told that you have a progressive disorder and will in time be helpless. There are medications and/or surgery which may help you to continue to function at "near" normal levels and may or may not slow the progression. However, there is no cure and no way to stop the progression. You will continue down the road to total helplessness, eventually. You ask when? Maybe tomorrow, maybe next week, maybe 10 years from now, maybe 20 years from now, maybe 40 years from now, and maybe never in your lifetime as something may kill you before the progression gets that far. And now for the rest of the story. In April 1995, at 46 years of age, I went to see a neurologist who informed me that I have Parkinson's Disease. It is not contagious, not hereditary, not curable. It will progress, relentlessly. I was immediately put on a battery of medications to slow the progression, relieve the symptoms, and help me function on "near" normal levels. After 3 years of adjusting medications and diet and life, I am functioning at "near" normal levels, learning more than I ever imagined about brain chemistry, and waiting for the end. I am learning daily that things which I took for granted I would be able to do for many years are beyond me now and some things may never be within my grasp. If I could hide this disorder I would be living alone with it. But I cannot hide it therefore my family and friends are also living with Parkinson's Disease. We are all learning more than we ever intended about brain chemistry, neuro-muscular disorders, caregiving, and living with a disability. And I am not alone. There are over a million people in the United States diagnosed with Parkinson's Disease. We are not all over 60. In fact, more than half of us are under 60. We must give up jobs, special interests, sports, and many facets of our lives that we had intended to enlarge. For the million + people with Parkinson's Disease there are at least a million + caregivers. These people are spouses, children, parents, friends who spend countless hours taking care of us instead of working or playing or whatever else they could be doing. Many of us are very independent and want to continue to be so. We put on a "brave show" which makes some people think that Parkinson's Disease is not really disabling but merely an "inconvenience". How wrong this impression is. Once a friend of my son's saw my tremor and started to shake his hand saying it was the same thing. I told him to hold out his hand and shake it. He did. I then told him to stop and he did. I held out my hand and it shook. I looked at him and said, "I cannot stop it." Not the same. Not only has Parkinson's Disease progressed for millions of people for over a hundred years but so has the progress toward a cure. Although there is no cure now, many people are close. So close in fact, that some people believe if concentrated Parkinson's Disease research were funded a cure could be found in the next few years. To this end the Udall Bill, in honor of Senator Morris Udall, was passed with very few nay votes in both Houses of Congress and signed by President Clinton. This bill would provide money for concentrated Parkinson's Disease research and bring us very close if not completely to the goal of a cure in the next 3 years. However, the bill has been sabotaged. Although passed and signed, it is not funded. The funds have not been appropriated and some in Congress are saying that the National Institute for Health should not be told exactly what to study, but be allowed to choose their own projects. How do they choose projects? All applications are screened to make sure that they rely on sound scientific principles as well as being run by reputable scientists and doctors. After this screening which does not rule out very many projects, the ones funded are the ones with the loudest lobbies. That's right, if a disease or condition has an outspoken action committee they will get funded while more urgent or needed research goes unfunded. What do you do about this? How do you help all of us with Parkinson's Disease? You could call, write, e-mail, fax, or go see your congress person and tell him/her you want the Udall Bill fully funded, NOW. You could call, write, e-mail, fax or go see President Clinton and say you want the Udall Bill fully funded NOW. You could contact the National Institute for Health and say you want the FULL Udall bill funding spent only on concentrated Parkinson's Disease Research, NOW. Marling McReynolds [log in to unmask] P.O.Box 129, Redway, CA 95560 PD diagnosed in 1995 at 46 years of age, disabled at 48