My name is Ed Martin and this is my first note to this meeting, although I
have been reading for several weeks. My wife, Judy, has had Parkinson's
for 23 years, since she was 26. In that time we have been fortunate to
have had very good medical care for her, but like many whose notes I have
read these past few weeks, even the best care does not seem to give her
back all that she has lost.
Over the years, because of job relocations, Judy has had care at
Parkinson's Centers in Joplin, Mo., Washington University in St. Louis,
Cleveland Clinic, and currently at the Parkinson's Center in Minneapolis.
We have been the route with medications, from artane, amantadine, sinemet,
and permax. Judy was part of the testing protocol for permax, which gave
her some good relief for a time. Unfortunately, she was one of the ones
who had a bad response after she had been taking it for some time,
resulting in a heart attack and a month in the hospital in 1988.
Currently, she is taking Sinemet CR and amantadine, and seems to be doing
well. She has the usual "on-off" times during the day, though. Her
activities are very limited and someone is with her almost all the time. I
have a home health care attendant with her about six hours a day to help
her with her activities.
We have been active in support groups wherever we have lived and have found
these to be a real help. I would encourage any who read this note, and who
have not found a support group, to find a group to attend. You will
benefit from good emotional support and sharing information with one
another.
Because of Judy's Parkinson's and the many research issues that we have
been facing over the past several years, I have become active with the
American Parkinson Disease Association here in Minnesota, serving on their
board. I also serve on a group begin in the Twin Cities area called
Supporters United for Parkinson's Education and Research (SUPER). We have
become affiliated with the University of Minnesota Medical Foundation, and
are helping fund Parkinson's research at the Lion's Research Building on
the University of Minnesota campus.
Well, that is enough for now. I look forward to meeting you "online"
sometime so we can share concerns about treatment and research issues.
EDWARD MARTIN, Truman, Minnesota. (written on Sat, Apr 15, 1995, at 3:23
pm)
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