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One of the key points to keep in mind is that DBS will not help certain symptoms e.g. DBS will not help balance issues. Also, DBS may have a negative impact on certain issues e.g. speech. ---- Ruellene and Roger Seymour <[log in to unmask]> wrote: > John, > > We've corresponded before, about a year ago. Glad to see that you're still > active. IMHO from what I've been reading and have been told by some who > have been through DBS, I would keep asking around. It seems to me that the > past 5-10 years have brought two major shifts in attitude regarding DBS: 1- > perhaps due to greater experience with the procedure and the use of more > sophisticated techniques, DBS is seen as less risky than before, 2- studies > have shown that, when done on earlier-stage patients, the gains are > relatively more significant and allow some years until the progression of > the disease puts you back to where you were before DBS. So, it's no longer > seen as a "last resort" approach. > > I had switched specialists as my original neurologist in Philly left her > practice. To stay closer to home, I got a referral to the University of > Rochester Medical Center, which is on the NPF's list of Centers of > Excellence for PD. I asked for and got Dr. Irene Richard. At the time, > she seemed to be strongly involved with issues like depression, which was a > major concern for me then. Anyway, during my first and only visit there, > she mentioned that I should consider DBS myself. She wasn't at all pushy > about it, and talked mostly in terms of regaining lost ability. (Shortly > after, we decided to move to Wisconsin to be nearer family, which is why I > haven't continued with her). It seemed to me that URMC has reasonable > depth in the movement disorders arena. It'll be a bit of a drive for you, > as it was for me, but hopefully it would be worth it. > > As for convalescence, that may vary depending on the doctors and your > circumstances. One person I know who went through the procedure was told > she couldn't resume medication for several weeks after her procedure. > Though she ended up using less meds than before, she was not able to > function independently during that period. > > Good luck! > > Roger Seymour > > On Sat, Nov 15, 2014 at 8:25 AM, carol <[log in to unmask]> wrote: > > > John, your original post did show. For you to see your posts you email > > [log in to unmask] and in the body of your message type: SET > > PARKINSN REPRO > > > > I did not respond to your post re neurologists as I live in Canada. > > However, I can tell you that I was diagnosed at age 51 in 2006 and had DBS > > at the end of January 2014 (to address unmanageable levodopa induced > > dyskinesia and dystonia). I am not sure why you think you will need to be > > on extended leave as a result of the surgery. I was discharged from > > hospital the next day and altho I couldn't drive for a month and looked > > like a dog had chewed my head, I was up and about that very same day. > > I noticed my "soft" voice before DBS and it is no worse after. Everyone > > is different -- good luck. > > > > Carol > > > > -----Original Message----- From: John Bianchi > > Sent: Friday, November 14, 2014 10:26 AM > > To: [log in to unmask] > > Subject: Asking for advice on DBS, Neuro's and fighting PD in Buffalo, NY > > > > Sorry to send this way but previous post never showed (?) so i am trying > > resending it - thanks for your patience > > > > My name is John. I was diagnosed with PD in 2008 at age of 50. I've been > > following this listserv since then but have had little to contribute. I > > have been > > fighting the fight, best I could with exercise, diet and minimal > > medication. I > > have been able to continue working as a teacher, although it is getting > > harder; > > on feet all day - great; paperwork at computer all evenings and weekends - > > killing me. > > > > Alas, about 18 months ago I switched to a different neuro and started the > > Sinemet/Stalevo drill, which completely relieved my symptoms. As required > > dosing times have now dropped to about 2 1/2 hrs,however, my neuro has > > informed me "that it is time for DBS." Since I've only seen this neuro > > 4 times ( > > for a total of about 30 minutes) , the neuro has never seen me "off" and > > doesn't have time to discuss options, I feel that I need a 2nd opinion and > > possibly a new neuro. > > > > Therefore, I am reaching out to the listserv for advice. > > > > 1) I would especially appreciate recommendations for neuro in Buffalo,NY > > area . > > > > 2) Also thoughts, experiences on how to find best place for DBS in the > > region > > (Buffalo, Rochester, Cleveland, Toronto). > > > > Ray, I remember that you and quite a few other list members have mentioned > > loss of your voice as a major negative consequence to your DBS. Since I > > am a > > teacher, I have resisted the idea of DBS in the past because of this. > > Furthermore, I would have to take extended leave this year; since I am in a > > system that does not grant tenure, I sense that taking leave would mean no > > contract renewal. > > > > I was hoping that DBS would buy me a few more years at teaching. My family > > is suggesting that that opportunity is gone, that I need to focus all my > > efforts > > on my health as I prepare for the long, arduous fight ahead. They suggest > > that I go on leave, file for disability, get the DBS and use the time it > > buys me > > to focus on exercise and nutrition; they suggest that DBS only buys me a > > few > > years and it makes sense to concentrate on exercise, nutrition and family > > while > > I can. Any thoughts ? > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > > utoronto.ca > > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > > utoronto.ca > > In the body of the message put: signoff parkinsn > > > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn