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Nancy 51/21 is coming out of 5 months of pure hell. As we began adjusting medications after her pallidotomies last year (May and July) everything was looking so good. Then about five months ago everything seemed to go wrong. Insomnia, depression, significant confusion, minor hallucinations and very bad off times. She has fallen maybe 10 times since the surgery, black and blue marks but no serious injury. Through it all, tremor was miniamal, dyskinesia was absent but back and hip pain and dystonia were present. Nancy sat down and typed this out the other day and asked me if i thought it should be shared. Here it is. I think it is part of her recovery process. I know we would both welcome any comments. It reflects some pretty intense feelings and it is work in progress. Our daughter, son-in-law and two grand children visited today. it was a wonderful visit. [log in to unmask] July 10, 1996 It’s more than a year now and I am lost in a labyrinth of self. I can find no exit and I am tired beyond belief. How much longer can I tolerate myself. I don’t like the person I have become. I give myself no peace. What am I so afraid of. Am I not a person separate from this disease? Sometimes I wonder. I thought I was being successful at separating the physical from the emotional but now I wonder. The tension I experience during my off times is the most intense sensation I have ever experienced. It starts nowhere... it is everywhere. To touch it is exquisite torture. The sensation is not good or bad it’s just too much. Something must change and it has to be me. But what does that mean? What do I know. I know I hurt, I know that I fall and it is extremely frightening, (Maybe the first fall set me up) I feel that wonderful things are within my reach.. Only I can’t see them It’s as if I were deaf, dumb and blind. I cannot function as I should. I am becoming disparate. Yet there are times it is so obvious that God is with me Why does this not empower me? O ye of little faith. Right now I feel like leaving the medical community completely alone and just get by with God’s help No more medicine, surgery or anything . What was It like to be well? I can’t remember but I want it so badly it hurts. Will I ever feel normal again. I doubt it and that is what is driving me crazy. I really don’t know how much longer I can or even want to go on this way All I see are negatives. I must get almost completely well. Can I face the challenge after failing for a year? Is there any health in me.? I must find it! Nancy Martone