Dear Marge-- this does sound rather like what Peter started doing in the
past few months. Ida Kamphuis suggested it might be "wearing off
dyskinesia", as she has something similar. Peter can do it at any time,
though, and has never had any other dyskinesia, except occasionally with
his jaw. Often it starts when he loses his balance, OR when someone grabs
and tries to help him, OR if he is freezing in place, and I try to get him
going by pulling the walker. (That latter often is OK--it doesn't always
cause the jumping, which is very uncoordinated, BTW. ) Does this still
sound like what you do?
I mentioned it at our last clinic visit, but got little response, and they
didn't have a chance to observe it. Peter has been on Sinemet since '89,
and also takes it at 2 or 3 hour intervals.
Today a friend brought a wheelchair on loan, and Peter is trying it out.
With his dementia it will take a while to get comfortable with maneuvering
it. He has wanted one for some time, and I dragged my feet, not sure it was
needed. However, it may be time to have it available, if tonight is any
indication. We had a very scary and exhausting time getting him, via
walker, to bed which was hard on us both, but managed not to fall again, as
he did this morning.......comments are welcome.
>In an earlier post today, Camilla Flinterman described her husband's
>"bouncing
>up and down" in relation to his falling. I read this with great interest
>because I have never head of another PWP with that problem. I too tend to
>bounce up and down. I consider it part pf my dyskinesia. I go through this
>activity of hopping, at times quite violently. I have been told by several
>neuro MDS and the nurses who work with them, that they have never seen
>another Parky who hops like I do. I am wondering if it could be the same
>thing.
>
>I would be very interested to hear from anyone who has this problem of
>hopping up and down, as part of his dyskinesia. My hopping is always done in
>an on state and can be very disabling to my walking and balance. I tend to
>go through this hopping especially at beginning and end of my doses of meds
>and frequently through most of the the two hour interval, which is how often
>I take my Sinemet. I've been on Sinemet since 1986, and it made me
>dyskinetic after about the first six months. I've been hopping for years.
>It is exhausting when it's bad. The only good thing I can say about it is it
>keeps my weight down! Also most of the falls I have taken have been in an on
>state, and I think the dyskinesia has something to do with it.
>
>Marge Moylan
>PWP diagnosed in 1986 at age 41/ symptoms go back to 1983, possibly 1975
>
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Camilla Flintermann, <[log in to unmask]>
on the web at http://www.geocities.com/camillahf/index.html
" Knowing when to insist, and when to let be,
is, perhaps, a lifetime learning experience ."
--Mary McCurry
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