[Jim091866]

Hello all,

I couldn't wait to get back since my laptop is so slow on the net. I just got back (literally at 1230 this afternoon). Before I left I was taking 2 sinemet 25/100 every 2 hrs. That was my med regimen prior to DBS and resumed after it as well. I got good relief from the dyskinsea but I felt there was little improvement in my motor function. I know this was not wholly the case because I could turn off the stimulator and I would be crawling so it had improved my motor function but not to the extent that I would have liked. All in all the DBS drastically improved my life. The problem was that none of the neurologists in this area wanted to treat me because I could not get my meds lower. The most they wanted was 5 tablets a day!! Please, I'd be in bed or in a corner. That was the picture prior to the visit to Shands...

Today I am on the second day with my new settings. It is now about 4 o'clock in the afternoon and I have taken 1/2 a tablet this morning at 7:15 and 1 tablet at 3 o'clock. They have told me to take some medications and not to stop the sinemet abruptly but I don't feel as though I need ANY meds. Since we have been home I have:
1. Walked the dog.
2. Gone to home depot and petsmart, (my daughter drove me.)
3. Put away the suitcase after unpacking.
4. Started some laundry.

I feel like they took the time and found the settings that worked for me. There is so much to say, the people are phenominal!!!! If you are near Gainesville, and need care, GET THERE! If you have a medicare plan, one of those advantage plans the PFFS part works a lot easier than the HMO. No primary care gatekeeper crap to go through. Just GET THERE! I can't promise anything except that the people are great and in my opinion if there''s anyone that can help you they can! I feel great so far. They told me the settings were just getting established and that the 3rd or 4th day (Thursday or Friday) would truly let me see how it works. They also gave me an "emergency" appointment to get back in on Friday if this isn't working and they are going to follow me for the rest of my PD care. Hooooray!!!

And the football coach makes millions-hhhhhhmmm.

[paula_w]

wow what a relief it must be to have your life back! another example of how important calibration is to the success of the DBS

You have been a mess , i've been reading you - i'm over here on the coast feeling pretty lousy too but some of it is my own fault for not exercising enough. I'm going up there tho and was waiting to hear from you. i need to at least get evaluated.

i'm so glad for you ..you give us all hope when you sounded like there was no more hope. How long have you had that DBS with it not working? or rather when did you get the DBS?

hey i know adults who don't speak over football team gloating and such in Florida..lol

thanks for posting Jim,
paula

[made it up]

That's great Jim, so happy for you.
Lee

[Jim091866]

Originally Posted by paula_w

wow what a relief it must be to have your life back! another example of how important calibration is to the success of the DBS

You have been a mess , i've been reading you - i'm over here on the coast feeling pretty lousy too but some of it is my own fault for not exercising enough. I'm going up there tho and was waiting to hear from you. i need to at least get evaluated.

i'm so glad for you ..you give us all hope when you sounded like there was no more hope. How long have you had that DBS with it not working? or rather when did you get the DBS?

hey i know adults who don't speak over football team gloating and such in Florida..lol

thanks for posting Jim,
paula

Yep I was a wreck. I had DBS in Oct. 2007. I truly feel that I was never programmed correctly. It's a varied and frustrating story, and hopefully one that is in the past. All I can say is if you need help call them.

P.S. I'm a big Gator fan but can't help but think that the doctors and those who are really changing peoples lives are not properly rewarded.
Hey a final note, the morning I went to clinic, off meds of course, they had a fire alarm and we had to evacuate from the 3rd floor! Needless to say I forgot my walker at home and then I left my DBS controller at the B&B we were staying at. Not to worry, they turned it off for me prior to the MRI that I had. What a start!!

[chasmo]

programming is the Archilles tendon of the DBS program. The Medtronic course for programing is 4 hours long. programming is an art as well as a scientific endeavor. There are more than a few programs that are unsucessful, not because of poor surgery but the lack of competent programming. We see alot of that in my group.

Charlie