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------------------------------------------------------------------------ -------- Nancy, age 50, PD 20yrs. Pallidotomies May & July 1995 ------------------------------------------------------------------------ --------- Since her Pallidotomies last year, May & July, Nancy has progressed on many fronts. Pro: The terrible dyskinesia is gone. Elimination of constant dyskenetic movements has resulted in more enjoyable dining and socializing. Tremor has been significantly reduced. Ability to get out of bed and chairs has greatly improved. Parkinson's meds Sinemet 25/100 - 1/2 every 3 hours, Sinemet cr 25/100 every 3 hours, and Permax 1 mg.- 1/2 every 3 hours are all doing their job now. Occasional use of Ativan for anxiety works well. Replacement of Prozac with Serzone 1 per day is in progress. Hope is to improve sexual function (still to soon to tell). Blue lenses still seem to provide some tranquillity and come in handy. Caregiver getting closer to regular nights sleep (what ever that is at age 50). Socializing is fun again. Enjoyable golf is possible and ability to pick up and hold grandchildren has been a real gift.. Before surgery Sinement 10/100 with permax created terrible dyskinesia . Sinemet CR could not be tolerated. Wild extended bouts of dyskinesia were common. Blue lenses helped a lot but not enough to completely blunt the dyskinesia. Ativan was required often to temper panic attacks. Assistance all hours of the day and night required to get out of bed and chairs. Caregiver sleep patterns were regularly disrupted to help spouse turn over, get to the bathroom but there were occasionally other fun things too!. Prozac worked well but with some sexual dysfunction. Eating was hard work, socializing was not as much fun as it used to be. Holding grandchildren was not possible. Con: Freezing at end of dose is still significant and occasionally requires assistance from caregiver. Expectations were very high so we are still adjusting our sights downward. Menopause/menstrual cycle creates havoc with the Meds. Usually the weeks before menstruation Suffered a bout of anemia (several months before detected) which was easily corrected with iron supplements but many unusual behaviors occurred during this time such as constant chewing of ice and breaking of teeth. Thought this was related to the surgery but it wasn't and was corrected with the iron supplements and it has not returned. Unwanted weight gain of nearly 20 pounds has occurred probably because of the elimination of the dyskinesia (not burning the calories, and the joy of being able to eat normally again. Socializing is fun again but after 20 years of PD changes, reestablishing old social networks and establishing new ones is tough work. Its something neither one of us planned on. (But what a great problem to have.) Our own Interpersonal relationships are another huge challenge. The caregiver/patient role and the husband/wife roles have had to undergo some very significant changes. So much so that we are getting counseling to help us through the transition. After 20 years of adjustments and changes to increasingly disabling PD symptoms, virtually over night we have had to accept an enormous change in our lives. This obviously is a huge pro but an awful lot of what took 20 years to painfully build was removed literally overnight. Reflecting on what's happened might be described as the man who had three wives. The first a tennis player, golfer, party goer, wife and mother full or life and enthusiasm: the second and ailing wife with a progressive degenerative disease that was filled with depression and demanding of the highest order of understanding and communication found only in the marriage vows ; and now the woman who is re-establishing herself often reminding me that she is an adult and does not need to be told/helped/aided all the time. This reminder often involves things that I/we had started to take for granted but are now a source of new and interesting controversy. Four steps forward and one step back is close to 80/20 and we are learning how to accept that. But we still fight on, working for the UDALL bill and the promise of a cure. New finding: You might wonder why this sharing is occurring now, 8 months after the second pallidotomy. Well if you have hung in there with us we have what is for us a new discovery. And wanted to share it and ask if any others have experienced this? With or without pallidotomy. As we continue to fine tune this new and wonderfully exciting experience, we are able to focus more on other ills and woes such as random back, leg and arm pains and numbness in the left hand that seemed trivial pre pallidotomy. Yesterday in an effort to better understand some of these problems our neuro performed and EMG on Nancy's arms, legs, and back. Low and behold the tingling and numbness in the left hand which is where the tremor started 20 years ago was diagnosed as Carpel Tunnel Syndrome, which computer jockeys will relate to from excessive keyboard and mouse usage. My suspicion since Nancy really hasn't worked at keyboards, is right handed and has not had any repetitive stress type jobs in her lifetime is that the repitition associated with the tremor and in later years the dyskinesia are probably the cause. The medial nerve is the one that is the culprit. She suffers numbness and tingling in her thumb, index and middle fingers and some pain in the hand, elbow and upper arm. The doc said surgery would probably relieve it so we are considering that. In th emean time a hand splint worn at night should help. Anybody out there experienced this phenomenon?. Hope this report adds some value to this incredible list serv. We feel blessed to have discoved the list in December 1994 and we have been major beneficiaries of the kndness, thoughtfulness and intellectually stimulating material that so often is avalible here. ------------------------------------------------------------------------ - Bob & Nancy Martone [log in to unmask] ------------------------------------------------------------------------ -