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Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] -------------------------------------------------- From: "rayilynlee" <[log in to unmask]> Sent: Monday, May 04, 2009 8:18 PM To: "Scott E Antes" <[log in to unmask]> Cc: <[log in to unmask]> Subject: Re: DBS after Two Years > thanks, Scott!! I just ordered a little pedaler for $7.99 plus S&H. I > was going to get a big expensive one, but will see how this works out. It > said you could also put it on a table and use it for your arms. It had a > 5-1/2 star customer rating. > > bunions!! our trials never cease!! it's always something to give us a > challenge. > > Ray > > Rayilyn Brown > Director AZNPF > Arizona Chapter National Parkinson Foundation > [log in to unmask] > > -------------------------------------------------- > From: "Scott E Antes" <[log in to unmask]> > Sent: Monday, May 04, 2009 7:11 PM > To: "rayilynlee" <[log in to unmask]>; "Parkinson's Information Exchange > Network" <[log in to unmask]> > Cc: <[log in to unmask]> > Subject: RE: DBS after Two Years > >> Hi Ray! >> >> Thanks a lot. Like you, Laureen is glad she had the DBS surgery. I'll >> keep you all posted as time goes on. Yes, Laureen does have an exercise >> routine. She was using the stationary bike, then she asked me to buy her >> this pedaler (I call it). It's basically the bike pedals mounted on a >> little stand. She can move it around, pedal while sitting in a chair >> watching TV, etc. >> >> Trouble is, her left foot hurts right now, so it's hard to use either. >> After several years of PD and walking funny, she developed a bunion on >> one foot. Surgery fixed that, but now she's developed one on the other >> foot. It just adds to the difficulty walking, obviously. >> >> Still, Laureen is most often in great spirits. As you said, having the >> tremors gone was worth the DBS. And, since like you she doesn't take >> meds now (well, a tiny bit), those hard-to-bear dyskinesia are gone, too. >> >> Be well. Scott >> >> Scott E. Antes >> Northern Arizona University >> Department of Anthropology >> PO Box 15200 >> Flagstaff, AZ 86011 >> ________________________________________ >> From: rayilynlee [[log in to unmask]] >> Sent: Monday, May 04, 2009 6:54 PM >> To: Parkinson's Information Exchange Network >> Cc: [log in to unmask]; Scott E Antes >> Subject: Re: DBS after Two Years >> >> Scott and Laureen: >> >> Several months after I had my DBSs in summer of 2003 I started having >> trouble speaking. My neuro says it is due to the DBS and it has >> gradually gotten worse. I feel like I am strangling when I speak. I'm >> sorry to hear that Laureen is having the same trouble. >> >> I too have a hard time getting around and have to force myself to go out >> now. I don't take any meds. I got worse after my fall last year. I'm >> finally trying to get back to the treadmill again because that helped me >> walk better before. I have to be so careful l don't fall again, my >> balance >> is awful. I will "walk" in my pool when it heats up and am thinking about >> getting a stationary bike as studies show that helps. Does Laureen have >> an >> exercise program? >> >> The DBS was worth it as the tremors drove me nuts, my ocular migraines >> are >> gone, and I am never depressed despite everything. >> >> Ray >> >> Rayilyn Brown >> Director AZNPF >> Arizona Chapter National Parkinson Foundation >> [log in to unmask] >> >> -------------------------------------------------- >> From: "Scott E Antes" <[log in to unmask]> >> Sent: Sunday, May 03, 2009 3:19 PM >> To: <[log in to unmask]> >> Subject: DBS after Two Years >> >>> Hi All. Since we have so many members asking or reporting about DBS, I >>> wanted to comment. Two years ago this summer Laureen had her DBS >>> surgery. >>> After inital problems (nightmares?) with programming, she was doing >>> pretty >>> well. She was driving, shopping, visiting friends, etc. Not that she >>> was >>> back to "normal," but she certainly was doing light years better than >>> before the surgery. Oh yes, she was using the Nupro patch after >>> surgery, >>> too. >>> >>> Almost two years later, she still is virtually tremor and diskynesia >>> free, >>> taking almost no meds. (Especially since Nupro was pulled from the >>> market.) *However*, her mobility is poor, and she sometimes (not >>> always) >>> has difficulty speaking. She doesn't go to the store (even with me) >>> very >>> often, because she has a hard time getting around. Even so, DBS has >>> made >>> a significant and positive impact on her quality of life (and yes, on >>> mine). The Nupro seemed to make a postive difference, too, and we hope >>> it >>> will be available again soon. Be well. Scott >>> >>> Scott E. Antes >>> Northern Arizona University >>> Department of Anthropology >>> PO Box 15200 >>> Flagstaff, AZ 86011 >>> _______________________________________ >>> >>> ---------------------------------------------------------------------- >>> 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