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Thank you so much for your input Claire. It will be passed along to the patient and remembered by myself as well now that we suspect that I may be a fellow PD sufferer as well and am going in to be tested this coming week. I sure hope she can be convinced to have it and I will as soon as the doctor suggestes it I already can't stand the tremors and hers are way worse. Fear is a big thing for such a small word isn't it? Thanks again Clair. Claire Heffernan <[log in to unmask]> wrote: Re: DBS Surgery My husband, Tom, has had two DBS surgeries at UC San Francisco. He had no tremor with PD, rather more slowness, stiffness, etc. The surgeries helped immensely. I cannot tell whether he has taken his meds or not anymore, because he is almost always "on". His medications have been greatly reduced, Sinement by 75%, Permax completely eliminated and Comtan down 50%. There is one thing that is contra-indicated for this surgery is mental confusion. Looking back, I think he may been beginning that stage, just not really evident. That is his challenge now, but seems to be helped by Aricept. I think we would have made the same decision, and are happy we went forward with the surgeries. Hope this helps. Claire On 4/6/06, rayilynlee wrote: > Pauline > > The one DBS and the other redo of left side of brain stopped my tremors > which are now returning on right leg, my "good" side. I may need to be > reprogrammed or the disease may have just progressed, it's been almost 3 > years since surgeries. meds didn't help but once before and didn't help > after DBS so I don't take them. my speech difficulties started with 2nd > surgery. my fine motors skills, movement were not improved and are getting > worse, but it is impossible to know if I would be able to move at all w/out > DBS. Also, everyone gets a different result, from complete failure to > almost getting your life back. The way I got through the surgeries was by > hoping I would die on the operating table. DBS is scarey not only because > you must be awake, but because the outcome is so uncertain. I don't see how > I could have lived any longer wih those tremors. DBS is especially > successful treating essential tremor and Parkinson's tremor, but I have > heard it helps other symptoms and people need fewer meds. although dystonia > in toes was not helped, left foot straightend out on operating table. I > once swore I would never have this surgery but ended up doing it twice, > coming through with flying colors with a 'bad' attitude. if she can, it is > very important to get a competent surgeon and team. Good luck, Ray > ----- Original Message ----- > From: "Pauline Spaulding" > To: > Sent: Wednesday, April 05, 2006 9:37 AM > Subject: Re: Parkinson's disease > > > Hi you say that the DBS surgery helped with the tremors. Is that all the > two surgery's helped? I have a very close surgery whom we have all been > trying to get her to have it but to no avail. she is scared to have it. I > was hoping to show her some success stories to encourage her to have it. > > rayilynlee wrote: Hi Sabrina, I went with the "Unlock > the Cells" T-shirt because I feel like a > prisoner. The PD meds don't help me at all, so I am always "OFF", but I > know what you mean.. I had DBS brain surgery twice and that helped with > the tremors. How about "I'm all shook up" for a T-shirt for Parkinson's? > I'm putting your email on my Parkinson's List. > > Thanks and good luck. > ((((Sabrina))))) > Ray > ----- Original Message ----- > From: > To: "rayilynlee" > Sent: Tuesday, April 04, 2006 6:08 AM > Subject: Re: Parkinson's disease > > > > hi. thanks for writing! I do have a shirt for Parkinson's - "Turn me on" > > got the idea when I met Michael J Fox and he explained the on state > > and off state with medication. > > > > attached is a pic to see... also, I have them on my site with a > > description at > > http://freethestemcells.com/index-4.html > > > > plus more styles at www.cafepress.com/getstemmed > > > > let me know what you think :) > > > > Sabrina Cohen > > SabCo Productions > > Advertising/Media Relations > > 305.968.8024 > > www.freethestemcells.com > > www.cafepress.com/getstemmed > > > > > > > >> > >> From: "rayilynlee" > >> Date: 2006/04/03 Mon PM 07:19:05 EDT > >> To: > >> Subject: Parkinson's disease > >> > >> great idea Sabrina, do you have anything for Parkinson's disease? I am > >> a "lifer" who is a ten year > > prisoner. Survived ovarian cancer in 1980. Write and advocate constantly > > for hESCR. > >> Good luck > >> Rayilyn Brown > >> Surprise AZ 85374 > >> [log in to unmask] > >> > > > > > > > -------------------------------------------------------------------------------- > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > > > > --------------------------------- > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > How low will we go? Check out Yahoo! 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