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It is the batteries that die; the neurostimulators are in my brain; sorry, I have to get new batteries every 3 years now. This whole treatment is so hard to explain to people I've gotten mixed up on what I call stuff. I do forced cycling for 2 hours a day and after a year and a half have lost about 12 lbs. -------------------------------------------------- From: "Marti Coleman" <[log in to unmask]> Sent: Friday, October 15, 2010 6:46 AM To: <[log in to unmask]> Subject: Re: New member > I take the regular C/L now, although I've tried all of them at one time or > another. I get nauseous, too, but I don't see any alternative. Thanks > for the > tip about ginger ale--I've tried that before, but maybe I'll try it again. > I'm > sorry you have had trouble with your DBS-what makes the stimulators stop > working? I thought the battery rook care of that. You are not alone--we > have a > small support group in Bloomington, IN, and there is one other person > besides > myself who has had DBS, and he is not doing well at all. I hope the > reprogramming helps you. It just goes to show how very individualized > this > disease is. I wish my meds would help ME lose weight!! > > > > > ________________________________ > From: Rayilyn Brown <[log in to unmask]> > To: [log in to unmask] > Sent: Thu, October 14, 2010 9:52:07 PM > Subject: Re: New member > > Hi Marti > > I had 2 DBS in 2003 (one was redo of one side) at age 67. I've had the > stimulators replaced twice now. I never took PD meds much as they didn't > seem > to help, but when I "crashed" when my stimulators died in August > carbidopa/levadopa enabled me to move a little. My new neuro gave me CR > carbi/leva but I 'm waiting to try it again after I stabilize after some > reprogramming. Do you take the regular C/L or do you have the controlled > release kind? it gives me slight nausea but helps me lose weight. my > neuro > said to drink ginger ale. > > Although I can barely speak, at least I can move and don't tremor. I'm a > big > DBS booster but I guess some PWPs have not had good results. > > -------------------------------------------------- > From: "Marti Coleman" <[log in to unmask]> > Sent: Wednesday, October 13, 2010 4:35 PM > To: <[log in to unmask]> > Subject: New member > >> Hi all!! I was a member of this group several years ago but let my >> membership >> lapse because I didn't have time to read all the input. Now I'm >> semi-retired >> and think maybe I can keep up with it. >> >> >> I am a 61 year old female, and this is my 24th year with Parkinson's. >> Two and >>a >> half years ago, I had the deep brain stimulation operation on both sides >> of my >> brain. I still take carbidopa/levadopa 10 /100 and Amantadine, but I >> quit >> everything else cold turkey because the meds were making me feel sick all >> the >> time. I've tried just about everything in the arsenal of meds during my >> 24 >> years with PD, but for now this combination seems to be adequate. I >> would >> encourage anyone who is interested to look into DBS seriously, as it has >> definitely proven helpful to me. >> >> >> I would welcome any questions about the operation, or anything else for >> that >> matter. >> >> Thanks for listening. >> >> Marti Coleman >> Bloomington, Indiana >> >> ---------------------------------------------------------------------- >> 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