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Date: Fri, 28 Jul 1995 19:49:42 EDT From: [log in to unmask] (MR ROBERT A MARTONE) To: [log in to unmask] 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 -------------------------------------------------------------- Bob Martone [log in to unmask] --------------------------------------------------------------