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Hello Joan and others, I've been reading this thread for a few days, and it sounds to me that while I've heard of some people having a wonderful response to the DBS, a lot of those who have posted here have had a mediocre benefit. Is that so, and have any of you gotten worse, as you have on one side, or were left with any damage, like speech problems? Anybody had an improvement in Akinesia, Bradykenisia, use of fingers, less dragging the poor side, better sleep/more energy? I have visited a web site on this topic, but I didn't see many individual stories on how they did. I'm considering DBS/STN, and I don't as yet have any dyskinesia, but I have dystonia, and pain on my right side, my more affected side, which has recently become a real problem. I had my Sinemet and Requip increased to a good benefit, but I think that has increased the dystonia. So I'm chasing my tail with relieving PD and creating other disabling side effects, which I'm sure you are all too familiar with, and is one reason I'm considering DBS. I would very much appreciate anything you wish to share with me. Charlotte Mancuso On Mon, 1 Jul 2002 08:55:22 -0400 Joan Holliday <[log in to unmask]> writes: > I'm probably jumping the gun here as I just had my DBS (both sides at > once) > in May and June of this year and have only had one session since > trying to > get adjusted. I don't see the doctor/adjuster until the middle of > July. I > haven't noticed any hand improvement (still can't write, cut food, > or sew} > but am walking without freezing and getting out of chairs w/o a tug. > At the > visit where they first turned me on they chose not to reduce the > drugs so > I'm struggling with the jerks which I hate. I decided to gradually > reduce > my dosage of sinemet and permax but haven't found the magic > combination yet. > I haven't experimented with turning either generator on and off--in > fact I'm > not sure when they are on except I can walk better with them on and > they > told me to leave them on so I assume they are still working. I > don't have > the instrument which tells you whether you are on or off because I > didn't > want to spend the $2,000. I have been struggling with this crazy > disease > since 1977 and have spent a substantial sum of money attempting to > control > it. DBS was my last hurrah. > > Good luck to all of you. Joan > > > ----- Original Message ----- > From: "RON HEIMBACK" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Sunday, June 30, 2002 10:49 PM > Subject: Bilateral DBS > > > > My wife had DBS in April and March, 2002. The first operation > provided > > wonderful relief, however the second did not. We recently tried > turning > > off her second stimulator with great success. She is able to live > a > > normal life now. We only turn on the second stimulator when the > tremor > > in her leg bothers her. This is only turned on for a short time > [15 > > minutes or so] occasionally as this stimulation disturbs her > balance and > > ability to walk. Has anyone else had a similar experience? > > Ron > > > > > ---------------------------------------------------------------------- > > 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn