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Ken -

In a message dated 97-03-24 00:34:12 EST, you write:

>. The parts that are affected the most are my
>right arm and left foot. When it's at it's worst my arm bends up behind my
>back and feels like it's going to break. If I attempt to walk around the
>block for a bit of exercise my left foot twists up so that I am walking on
>the very edge of my foot.

What you describe is dystonia.  It's most likely a reaction to the Sinemet at
peak dose.
My husband had the same problem until his pallidal stimulation surgery, which
greatly reduced the dystonia, although it didn't eliminate it.

We've found that more people are troubled by dyskinesia (involuntary
movement) than dystonia, so even many PWP don't know much about it.  By the
way, one doctor told me that technically, he thought dystonia would be
considered a subclassification of dyskinesia - not that we care about the
classification when the dystonia hits!

You might start observing just how the timing of the dystonia correlates with
the medication you've taken.   One way to reduce the dystonia is to reduce
the amount of medication, or to take the same amount but in half doses, twice
as often.  That keeps the Sinemet from packing such a wallop when it hits
your system.

Dick found that trying to control his tremor and other symptoms while keeping
the dystonia to a more tolerable level was a true juggling act.  It
eventually got so he had no good "on" times.  He was either "off" or "on with
dystonia."   I don't mean for this to discourage you, but just to let you
know we understand what you're dealing with.  As I mentioned, the ultimate
solution for Dick was surgery.

Hope this helps.  Best wishes, Margie Swindler, cg for Dick (52/15)
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