 |
 |
The purpose of my sending this to the list is to confirm that there is hope with respect to the recent papers in Nature and Science even more hope for PD sufferers than 3 years ago. As a "guinea pig" I felt an obligation to others to discuss my part of the experiment. 37 months ago I underwent nuerotransplant surgery at The Neurosciences Institute, The Hospital of the Good Samaritan in Los Angeles. (I am a male who was 57 at the time and was formally diagnosed when I was 50, but was mildly symptomatic for at least 10 years earlier.) A 3 year post-op evaluation was just completed. The protocol did not extend to 3 years, but as I understand it, the scientists are finding improvements extend beyond the initial protocol period. The symptoms that appeared improved within a short time after surgery, no micrography, good arm swing, ability to move facial muscles, ability to wiggle my toes, continue to improve. Mobility is generally good as long as I am not stressed. I continue to walk daily (about 45 minutes) and attempt to follow a PD exercise schedule; but have carpal tunnel syndrome along with ulna nerve neuropathy which hurts! I did not take cyclosporin post-op as I have had cancer and the surgical team thinks cyclosporin can trigger activity in quiescent cancer cells. When the meds work well and my brain cooperates, I sometimes feel normal. My problems with stress (anxiety and/or panic attacks) are helped with Xanax but I wish I didn't need to take it. I have reduced Sinamet by 1.5, 25/100 daily (now 6/day) , and take Mirapex, Artane and Tasmar in sub-therapeutic titrations. Periods of stress and anxiety may last only a few hours, but often take weeks for me to reach the higher quality of life (the plateau) I was experiencing prior to the stressful situation. Sleeping is a problem (turning and getting in and out of the bed.) A set of satin (acetate) sheets helps greatly but I need to be careful and not slip out of the bed and slide onto the floor. When stressed or when anxious for reasons I don't understand and when sinemet and other drugs do not work, I have episodes of freezing in place when movement and speech are very difficult. When possible, I speak to my feet and legs if I am immobile, "left foot take a big step" and so on. I carry a walking stick for "insurance" if I intend being in an area which is crowded. I have fallen on occasion, but find if I stop and breathe deeply, my chance of falling is reduced. I tire easily and my voice, by the end of a few sentences, is soft. I speak much slower than I used to and short term memory is not as I would like it. Claudia Perdices, the NPF Patient Services & Outreach Program Coordinator at Good Sam [log in to unmask] can provide additional info. 800-841-8765 --------------------------------------------------------------------------- ---------