 |
 |
I subscribed this morning to this Exchange Network and I'm hoping to gain more insight as to the long term affects of PD. I am not a PD patient, but my Mother suffers from advanced stages of the disease. She was diagnosed in 84 and is now 72 yrs old. For many years she was able to control the symtoms of the disease through exercise, diet and meds. All that changed when she suffered a stroke in 96. She has no use of her right side, although for many years afterwards she could walk with assistance and it was the highlight of her day when she could do it. She is in the care of a new neurologist that has given her a little hope. He's been able to adjust her meds to lessen her "off" periods but as a result the "on" periods are accompanied by severe diskinesias(sorry if I spelled that wrong). He has also mentioned she may be a canidate for DBS, so it's great to read about those who have already had the procedure done. I worry about the long term affects of PD for her only because I see the frustration my Mom goes through when she's shaking so much, she gets so hot because it's like exercising constantly in her wheelchair. Can the diskinesias alone be fatal? Thanks for any input. Again this is my first time writing, and I appreciate the support that's available. Johanna M. Whelan Environmental Specialist II 3920 Michigan Ave Fort Myers, Fl. 33916 941-332-9556 -----Original Message----- From: Joan Holliday [mailto:[log in to unmask]] Sent: Tuesday, July 02, 2002 8:02 AM To: [log in to unmask] Subject: Re: Bilateral DBS 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