See this video about a young DBS EOPD patient. He does state that the DBS fixed the dyskinesia not the PD. He's obviously much frustrated, as we all must feel. Taking as much sinemet as he's taking I wonder how long this DBS will be effective. I cannot yet post links so go to youtube and search parkinson's dbs surgery paul. go to www dot youtube dot com/watch?v=QFtgV1vqwiE. I have to trick it to get the link in there until i get a few more posts. take out the spaces.

the title of the vid is shaken: Journey into the mind of a Parkinson's patient. Dr Kumar in the vid was my doc and he had me totally misdiagnosed yet was pressuring me like mad to do DBS. He was also pressuring me to start staggering amounts of psych meds even though the psychologist HE sent me to (a partner who works as part of a team with him) disagreed with him and said I did NOT need psych meds. She suspected he was behaving himself b/c he thought she would eventually agree with him. When she did not he went off the first time I took someone else to an appointment with me. He told this person a lot of stuff he never mentioned to me and I was pretty much stunned as was she.

The other thing that gave me pause was reading about a woman at the same Denver DBS center that lost her ability to speak for THREE years after DBS until they "got it right."

There is an often-misdiagnosed benign tremulous parkinsonism that is very SLOW developing and should NOT IMHO be treated with sinemet since there are many less dangerous meds that treat it very well. They thought for a while this is what I might have. However as I taper off sinemet it is changing in nature and fading so not believed to be parkinsonian at all. Check out this link (take out all of the spaces) at www dot prohealth dog com/parkisons /blog/boardDetail.cfm?id=5635

Michael J Fox said in an interview somewhere that I read that his DBS fixed many things but a few weeks later he developed numbness in the OTHER hand, which was the symptom that led to the diagnosis of PD. So almost right back where he started again with all the l-dopa and now very dyskinetic. I admire the heck out of Fox and I hope he makes it well until there is a cure.

This video is the one that made me say DBS NO FOR ME NOW. Since I can pass for normal 99% of the time to the untrained eye. Thank the heavens I did wait. The doc (Kumar) in the video was my doc who said I needed DBS or I would be in a nursing home in 3 years if I didn't get that or a sinemet pump implanted. The big problem is that he misdiagnosed me, I don't have PD. I have a feeling the whole premise of treating with sinemet is flawed after my experience. I have hours of video of "classic" dystonia, tremor, and dyskinesia

I'm working on some video I'll post as I can. Still tapering so still some very slow days. But some glorious normal ones in between. I just wonder how many others there are like me. I am not that special by way of diagnosis or symptoms. I was "classic" yet I am PD free. I know the news can't be that wonderful for everyone but if even one person asks strongly enough or one demands a dosage decrease or to delay sinemet then I'll have done something in this life worth doing. Preventing one moment of suffering for anyone I consider a victory.

From what I read even with DBS you are NOT off meds. Maybe less but not none. Questioning if you are ready means you are not IMHO.