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PARKINSN Archives
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PARKINSN@LISTSERV.UTORONTO.CA
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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
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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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