 |
 |
yes, I know, although they cannot tell exactly there is a formula they can use. I'm confident my new neuro can handle it, unlike my old one. my "bike" just has motorized pedals. I pull up to it in my wheelchair and watch TV while it helps me pedal. -------------------------------------------------- From: "Marti Coleman" <[log in to unmask]> Sent: Sunday, October 17, 2010 4:44 PM To: <[log in to unmask]> Subject: Re: New member > Your neurologist/DBS person should be able to see how much battery you > have left > at any given time so that you are not put in a position where the battery > dies > and you are without stimulation. The battery gets used up depending upon > how > high your voltage is, and they can measure that. > > > By the way, I assume when you say "forced cycling" that you mean > stationary > biking? > > > > > > ________________________________ > From: Rayilyn Brown <[log in to unmask]> > To: [log in to unmask] > Sent: Sat, October 16, 2010 8:09:48 AM > Subject: Re: New member > > 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 > > > ---------------------------------------------------------------------- > 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