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.
>
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Bob & Joy Graham
37 D Fremantle Village
Lot 1, Cockburn Rd
South Fremantle WA 6162
Australia
Ph & Fax (08) 9430 4730

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