[no subject]

[Barbara Patterson <patterso@xxxxxxxxxxxxxxxxxxx>]

Date: Fri, 28 Jul 1995 19:49:42 EDT
From: VRGS59A@xxxxxxxxxxx (MR ROBERT A MARTONE)
To: PARKINSN@xxxxxxxxxxxxxxxxxxx
Subject: Pallidotomy Update Nancy Martone

List Members

Nancy had pallidotomies on right brain, May 23, and left brain, July 7.
She is doing incredibly well. The dyskenisia that she sufferered has
been eradicated. She is sleeping most of the night (me too), has
resumed driving locally for groceries, church    etc., bought herself a
new set of golf clubs (ouch) and seems to be getting better every day.
 We spent a week on vacation in New Jersey with family (we live in
Texas) and no one could believe their eyes. Together we presented a
draft copy of the video on Nancy's story to the Hunterdon County
Support Group and got a wonderfully enthusiastic response. There was a
man 45-50 years old in attendence with severe dyskenisia who had a
unilateral Pallidotomy done during the past year and he did't show much
improvement. Nancy and I were able to spend some time with him and his
mother who has become his caregiver to offer encouragement to continue
to search out help.  Nancy was able to stay on the go all day long
wihout taking naps. This she hadn't done in years. She gets in and out
of bed by herself, is able to manage close quarters and more. The
change is just astounding.

In trying to find some negatives, there really aren't any yet that
appear to be long lasting. Her ridgitiy and tremor during off times are
still present but do not seem to be as disabling as they used to be.
She is adusting her sinemet consumption right now including Sinemet CR
which prior to the surgery she could not take because of the terrible
dyskenisia that it created. Yesterday with 3 50/200 CR's and 3 25/100
regular sinemet  and 3 10mg permax she went from 7am to 7pm with no off
time. Today we visited her neurologist and developed a new schedule to
try to cutback the sinemet. The good news is that taking close to
double the amount of sinemet has been tolerated with no dyskenetic side
effects.

We have a new life ahead of us, God willing we will use it to help
others and together put up one hell of a fight to get the Udall Bill
passed so that a cure can be found

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Bob Martone vrgs59a@xxxxxxxxxxx
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