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Ken

I know one question "they" recommend you ask is "how many DBSs have you done and what were the outcomes, but I never did that because the reputation of Scripps Clinic La Jolla California is that of world leader -  people come from all over the world for medical treatment there.  Also, I didn't think I had that many choices anyway.  I selected the best place I could find that was fairly close by.

The thinking now is "better earlier than later" because studies indicate DBS slows progression of the disease.  With the exception of my voice problems, which my neuro says are due to DBS,  I'm not much worse than I was 6 years ago when I had 2 DBSs in the summer of 2003.  It would have been good to have stopped it when I was in better shape, but getting worse and having my tremors go bilateral was what pushed me to have it done.  If I hadn't had tremor and if PD meds were working for me I don't think I would have had the nerve for holes to be drilled in my head while I was awake.

I don't take PD meds, but I understand people who do can cut back and DBS really stops tremor and dyskinesia. If something better comes along DBS can be reversed, but not easily,  I think.  How they get those leads under your scalp to your chest is a real mystery and I will always have to have 2 chest implants instead of one which works with leads from both sides into one device.

 Good luck, Ken, and prepare to become a member of an exclusive club.

Ray

Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
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