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Joyce Tames wrote: > > Hi to all > Chuck and I hav been lurking for a few months and from a distance we see this > list straying far from its intended purpose. > > Guys and gals...LETS GET BAC TO BASICS !!! > > Stop the bickering, the name calling the accusations and the non=purposeful > talk. > > Lets all remember back about a year or so when we ran threads of strictly PD > related topics.. cramping, pains, dystonia, dykinesias, sleep, meds, new PD > info, govt funding, diet, medical and mental treatment, surgery, test > programs, financial and insurance matters, available govt programs, > suggestions how to make our homes easier to live in, were there more ??? > Im sure, GDNF, FAVA, black and white squares on the floor intended to help > relieve freezing, blue glasses, vitamin therapy....drooling, dry mouth, > speech problems, falling...and on and on.....(see SAM KALKSTEIN'S LIST > (TODAY) > > Isnt there enuf to direct our attentions to and share with our PD family??? > We learned so much about this disease here that it resulted in my > Pallidotomy, dosages of meds (from ALAN B. rest his soul) ????? > > Lets get back to real life PD situations.... there are a LOT of new members > from may countries where discussion of these topics are impossible to > find..this list has truely become world wide.... > > Lets reserve the bandwidth of the list and our valuable time by passing > personals directly instead of publishing them....or direct your comments > directly by typing the intended receivers name..Continue to put meaningful > titles in our SUBJECT line so as to giv us a real good idea of our > topics.....Dont repeat complete previous messages just to put your comments > at the end...its not necessary...we all can and shud hav read our mail > daily... use email for personal replies (oops I said that already) which > wud ot be of germane (sp) interest to EVERY 1000+ of us. > > LET ME START SOMETHING;;;; > > WHO HAS HAD A SINGLE PALLIDOTOMY....THE MAIN REASON AND THE LONG AND SHORT > TERM RESULTS.... HOW LONG AGO, BY WHOM AND WHERE. > > my contribution. > PALLIDOTOMY done March 13, Toronto Western, Toronto CA. Neuro..Dr. Lang > Surgeon, Dr. Lozano main reason...meds cud no longer control or correct my > toe cramping.... it was a long shot but it worked..... (I was in medical > control of a small amount of tremor) ten months later...still no cramps > and total meds reduced by over 70%%%!!!! without side effects. > > YOUR TURN >>>>>>>>>>>>>> > > regards,Joyce Joyce- I noted with interest that we were almost pallidotomy roommates in Toronto. Dr. Lazano did my surgery March 18th after I felt I had to try something to slow down the progress of the PD. I had done pretty well for the first 15 years but the last 5 have been trying. I had to give up my job and driving and had become almost immobile with far more off time than on. The dyskinesia was exhausting and embarrassing. Drs. Lang and Lazano did not promise the moon. In fact, they said I wasn't a top candidate because of my age (62) and because of the stage of the PD. I was willing to go for it because I was willing to accept even a small improvement. Well, I certainly didn't get a miracle but the change was enough to make me think the surgery was worth the risk. The jerking is almost entirely gone. Initially it disappeared completely but after about 6 months it returned for a very short period in the morning after I take my 25/100 whole Sinemet tablet. The rest of the day I take 1/2 pill every 2 hours. This has been a major improvement and the one most noticed by my friends. The on/off periods have almost disappeared. I can get around my apartment without help anytime both day or night. I don't walk fast or smoothly but at least I can maneuver around. I still can't walk in a store as I have too much back pain which is caused by pinched nerves. They result from a combination of bad posture, arthritis and injuries from prior falls. I still freeze, but only occasionally and for no long periods. I don't need to step over something to get started so don't have a floor full of objects that I had thrown down to get going. I didn't experience any improvement in hand coordination, and I still don't move very well in bed. However, I can still play bridge (I don't shuffle) and do jigsaw puzzles so life is worth living. Hope this has been pretty basic, Joan Holliday