Quote:
Originally Posted by JGreentree
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.
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THANKS;I have turned of the stimulator & I instantly go limp (I couldn't even stand up by myself)NO dyskinesias; everyone in my neurological "team" says to be grateful & optimistic... I keep thinking about last year, I could do almost anything I wanted, now I have to figure out how I gonna walk the 50 ft to my mailbox & back. I have tried all of the most highly rated programmers in my area, and yet I have to return to an early program written back in OCT 2011... this older program isn't working as well as it used to either...every programmer, be it an MD or RN, generally tells me they've done the best they could... I think that with the fast progression of this disease I'm headed for a wheelchair soon. Would you know of anyone who could look at the programming spec's (which elements, plus/minus phase ,duration,bandwidth, and voltages)..maybe just maybe therein lies the answer...