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Old 02-20-2013, 04:30 PM
made it up made it up is offline
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Join Date: Oct 2006
Posts: 376
15 yr Member
made it up made it up is offline
Member
 
Join Date: Oct 2006
Posts: 376
15 yr Member
Default JGreentree

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Originally Posted by JGreentree View Post
I've had PD since Dec 06, by 2010 Sinemet use caused me to suffer dyskenesias & when my Neurologist offered me the opportunity to become a "surgical candidate", I said "I'M IN!" Those of you who've had the surgery know that you have to go thru approx 6 mos worth of tests especially Psych testing before they put you on the table. My GPi bilateral surgeries took place Aug 2011, and recovery was about one solid month. I felt like a new man...dyskenesias gone! Walked the perimeter--approx 1.5mi every day. Drove myself everywhere I wanted to go... By July 2012 things began to unravel... Sinemet was becoming increasingly ineffective--I was freezing a lot more...My support group prescribed GYM TIME, so I did @ 100% effort. By Sept 2012, I was doing so poorly that I had to stop driving... Now I've seen 4 different programmers, an each time seems worse than the previous... (I'm currently back on a version designed by the FIRST programmer , albeit at higher voltages. My Neurologist keeps telling me to adopt an OPTIMISTIC outlook!
Would I opt for the surgery knowing what I do now (oh, by the way I no longer can speak intelligibly) I doubt it... I think I'd take my chance fighting the dyskenesias.
JGreentree,
Just some ideas for you in case you haven't already tried them.
First off turn your neurostimulators off and see if you're better or worse without them esp. your speech and whether or not you're dyskinesic still.
The fact that you found relief from DBS for nearly a year makes me think it might be a programming issue now so work through this till you get the right settings maybe with the one programmer be it a neurologist and or DBS nurse over a period of time?
Have you joined a DBS group? I'm a member of yahoo DBS and find they often give valuable advice.
Hope this helps. Best wishes.
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