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Dear Roger, Congratulation on all you have done to help yourself and your wife deal with PD. You have obviously helped so many others too. If I could I would give you a big warm embrace - Best wishes Joy Graham (Australia) >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 Bob & Joy Graham 37 D Fremantle Village Lot 1, Cockburn Rd South Fremantle WA 6162 Australia Ph & Fax (08) 9430 4730 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn