Charlie, many genetic trials do not allow the patient to be on DBS.

I said in my first post, that if I were diagnosed with Parkinson's today, I would not go for a DBS right away. I would keep my options open. Many people posting negatively in this thread do not realize the affect their advocating for more patient involvement has been heard. I have seen many positive changes, espiecially on the Michael J. Fox website from being able to choose where your funds will be applied for research, to the National Parkinson's Foundation, where they have now included patient needs into their mission statement.

My neurologist is more receptive to my complaints and no longer just blows me off with "I've never heard of that being associated with PD." Don't be so negative Paula. You have had a positive effect. I agree that it is probably too late to help us, but you have PLOWED (forgive the pun) the way for those recently diagnosed. Charlie you have enlightened so many about DBS, but I still believe that it is a later option than an immediate one. I realize Medtronic is encouraging patients that it is better to have the surgery earlier than later, but patients need to have time to understand their disease and learn about how fast it progresses for themselves, and how severe their symptoms are before they approach such a serious decision to have surgery.

Charlie, have you heard of or met the new Director of the Minnesota Mayo Clinic. They have a young neurosurgeon on staff who has some interesting theories on how DBS actually works. Was told this by my neurologist at my check up last Thursday.

Love,
Vicky