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^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 51/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses clear moonlit skies +11 deg. F :-) ******************************************************************** Hi Tony, and the LIST: I am going to be evaluated by a Massachusetts neurosurgical team in early January,.and by a Rhode Island team in February. Unilateral and simultaneous bilateral pallidotomy procedures are definitely to be discussed, among with other options. I am also looking into whether I could qualify for genetic therapy. My main problem is devastating and quick-arriving off-periods, during which complete paralysis tries to overtake me. Tremor is a minor difficulty with me. My internal functions are now slowing- and therefore I am not sure what's next. One day at a time, prayerfully forward I go. I still believe that there is a VIRUS that causes PD. I believe it could be found and immobilized, if enough research is prioritized in virology and immunology. I still believe that research to undo the genetic changes that a virus can cause, sort of like undoing knotted shoelaces and then lacing them in the corrrect sequence, could lead to a "cure," without the risks of cedrebral dysfunction and intra- cranial hemorrhages that are part of pallidotomy's risk package. Still, Tony, I am thrilled for you-and it gives me more hope to learn of your wonderful success with Dr. Iacono. Congratulations and good luck! Ivan :-) On Tue, 12 Dec 2000 17:27:49 -0800 tony schoonenberg <[log in to unmask]> writes: > Dear. fallow Parkies; > > A lot of you know me my name is Tony Schoonenberg I have been active > in the fight against PD since 1985. When I > was tould I I had PD. For the past 9 years I have been Dr. > Iacono's researcher and pt. I had also been suffering more > off time and was H&Y stage 5 50% of the time. I was taking > 1500 To 2000mg a day of l-dopa, 300mg a dat of amantadine, and 12mg > of mirapex a day. On aug. 9th 2000 > underwent a right pallidotomy by DR. Iacono (in 1995 I had a left > pallidotomy By Dr. Iacono) For severl months I was falling more than > 4 times a day. I tried everthing with my meds I could think of > (Liquid l-dopa Q1 hrs etc.) > Then I realized I was doing better with no meds. So I STOPED all > parkie meds. and now its a month latter > I am walking and talking better than 2 years ago! I have > no tremor. So the question is whats a cure? For me I am cured I am > doing better than I have in years on NO MEDS!!! > So I would say pallidotomy when its done by Dr. Iacono > is THE NEXT BEST THING TO A CURE! > > > Tony Schoonenberg > [log in to unmask]