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Old 04-11-2011, 05:01 PM
Jim091866 Jim091866 is offline
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Join Date: Oct 2006
Location: Central Florida
Posts: 520
15 yr Member
Jim091866 Jim091866 is offline
Member
 
Join Date: Oct 2006
Location: Central Florida
Posts: 520
15 yr Member
Default My experience..

Hi, my name is Jim. I had bilateral DBS in Oct 97. My symptoms much like your husband were primarily rigidity and slowness, no tremor. I was taking 2 25/100 every 2 hrs. Now I have decreased that to 1 1/2 every 2 hrs. At first I was not happy with the results, I was expecting better. I have had many programming sessions to come up with what I felt was the best settings. Many questions surrounding this, initially I would go to my neuro and he would change the settings til next month, etc. That's the wrong way to do it. I used a graph to show how I was on/off through the day and when I took my meds. Shows over time how you're doing without you having to remember or relying on how you "felt" it will show how you're doing. DBS is said to not work as well for ridgidity/balance as it will for tremors. Finally, I didn't think I was getting much benefit from my DBS until I did a sleep study for apnea overnight-I had to turn off the DBS. When I woke up the next morning prior to my meds I felt as if I was a quadrapalegic- I could barely move at all.
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