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Dear Joan, Thanks you for sharing your experience--it's like everything else with this disease and it's therapies--there are as many different experiences as there are individuals. I hope your next "tune up" brings greater results. Thanks again, Charlotte On Tue, 2 Jul 2002 08:02:28 -0400 Joan Holliday <[log in to unmask]> writes: > Charlotte-- > I have a speech problem it seems whenever I have brain surgery. My > pallidatomy left me speechless for about six weeks--the surgeon said > he had > never seen anyone with as many speech cells as I had but after two > or three > sessions of therapy (and lots of practice at home) it returned to > normal. > Then the DBS ran into the same problem--the surgeon, I think, was > hampered > in what he could do with other areas because of the speech cells. > This also > lengthened the time of the surgery by a couple of hours > which was a disadvantgage. > > I really am happy about the results of the DBS---I notice more each > day. > They are small gains but practical ones--walking w/o freezing which > allows > me to cross the room faster, get out of a chair easier, and using > the > bathroom without help. My aide says she thinks my speech has > improved -- I > don't notice much difference. I'm hoping for more improvement--they > seem to > think I should give it four months or so. The period between the > implementation and turning on (in my case about three weeks) were > terrible--lack of balance, walking poorly, etc. My main problems > now are > the arthritis pain--I was not a prime candidate for this > surgery--too many > other things wrong with me, too old (69) and disease too far > advanced (25 > yrs since diagnosed. I'll let you know what the next tune up > brings. One > thing I've learned is not to expect a miracle. > > Joan > > > > > > > > > Original Message ----- > From: "charlotte A mancuso" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Monday, July 01, 2002 1:38 PM > Subject: Re: Bilateral DBS > > > > 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 > > > > ---------------------------------------------------------------------- > 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