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Almost twenty three years ago, in 1978, my wife began experiencing strange clumsiness. She fell off from her bicycle for no reason and began dragging one foot while walking. Thinking she might have a foot abnormality she actually had some minor surgery, recommended by a podiatrist--it did nothing to help. Finally a neurologist came up with a diagnosis--Parkinson's Disease ! Being an RN and not unmindful of the long term prognosis she was extremely depressed at the news. But with sinemet--10/100 at first--no major impairment seemed visible and we continued to travel, enjoy most of the things we always had- theater, symphonies, social activities. We even moved to Europe for a year, while I was teaching courses in Germany, England and Spain--and during that year we traveled extensively in that part of the world. Shortly after our return to the States my wife decided to try to form a support group. The first exploratory meeting was announced by a small ad in the local paper. Three or four were expected--thirty five showed up. That support group now has 300 on its mailing list including around 190 Parkinson patients in the area. For several years my wife and I continued to travel-to the Far East, Greece, Turkey,-repeatedly to Hawaii and to London for theater. Meanwhile we ran the support group, did the newsletter, arranged for speakers, and served for three years on the Board of Directors of Michigan Parkinson Foundation which honored her with the Annual Raymond B. Bauer Humanitarian Award in 1996. Then things began to change . Gradually at first but with increasing rate of impairment her ability to move diminished in spite of faithfully trying all of the new medications as they were approved. (She has a wonderful Neurologist who stays current on developments and who is himself involved in Parkinson's research.) Formerly on Sinemet with severe dyskinesia she now is on Requip only and free of involuntary movement--or almost any movement ! Over the past three years my wife has developed dementia, can no longer feed or care for herself, is unable to speak coherently, is largely incontinent, and cannot stand alone. For a long time I could not find an adult foster care facility which I considered suitable and relied on private home health aides who came in each day to bathe and dress her, feed her lunch, and deal with her needs during the day. But for 20 hours per day I was occupied with cooking, laundry, shopping, chores which the cleaning lady didn't do--and otherwise trying to cope with a demanding and ever changing situation. Finally, when my own health began to suffer seriously I was forced to place her in an Alterra Assisted Living Facility which provided her with a private room and homelike atmosphere. I continued to retain my two wonderful aides on a seven day basis there to augment the staff and assure her constant care. After 14 months in that facility however, I recently moved her to a very beautiful Hospice facility--still retaining my two private pay caregivers six hours every day to help care for her there although the wonderful staff at Hospice assures me it's not necessary. Makes me feel better to know familiar faces are with her. My wife is 84. I'm 79 with a history of bypass surgery -and some other cardiac problems- otherwise reasonably healthy. I visit her every day and cope with feelings of guilt at not being able to care for her at home, but she is now getting far better care twenty four hours a day than I could possibly give her. Caregiving at home required a lot of lifting, coaxing, dealing with depression which seemingly is a part of the emotional regression involved and trying to stay supportive and upbeat no matter what ! Two days ago I obtained and read a copy of Morton Kondracke's book, "Saving Millie". He describes amazingly similar experiences and events to my own. I couldn't put it down until I finished it. And through it I have learned some things about the various national Parkinson organizations, and the political forces at play, which were most enlightening. So that's my story and explanation of why I sought you out on the web. ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn