Thanks for the info. I have already had my files sent to Dr Trinidad for a consult. I am waiting to hear back about an appointment. I have tried the other neuros you mentioned and have not had much success with them having time to see me; 5-10 minutes every 6 months doesn't do much for me at this point.
I did try the West Seneca meetings for a while back when I was first diagnosed. At that point, I was not able to relate their symptoms to mine and hence did not get much out of them. I may have to try again now.
Thanks again.
From: Linda Herman <[log in to unmask]>
To: [log in to unmask]
Sent: Monday, November 17, 2014 9:58 PM
Subject: Re: Asking for advice on DBS, Neuro's and fighting PD in Buffalo, NY
hi john. I also live in the Buffalo area. It is hard to locate a movement
disorders specialist in this area. I go to Dr. Trinidad. Her office is in
Orchard Park and she is affiliated with the Un. of Buffalo Neurosurgery
department.So she recommends dbs to many of her patients, but she doesn't
pressure you if you decide against it. Occasionally she will give you more
than the standard 15 minutes for an appointment, especially if you have a
lot of questions. However for awhile she wasn't taking on new patients, i
don't knnow if that is still the case.. The surgeon who does the dbs
surgery is Dr. Plunkett. People seem to like him, but a few choose to go to
the Cleveland Clinic where they use the newest equipment and techniques.
There is one other neuro who specializes in Movement disorders -- Dr.
Guttusso in Amherst. i heard him speak a few times and he seemed ok, but I
was never treated by him. And the Dent Clinic is supposed to have a MDS on
staff.
Do you know about the PD support groups in WNY? There are monthly meetings
in Amherst, West Seneca and Niagara Falls. Very nice people and lots of
good information. i can send you more iabout if you'd like.
I was diagnosed 19 years ago, when i was 45, Some days are better than
others, but i try to remain active physically and mentally as best i can,
and that keeps me going. I also want to be around when the cure is finally
found.
On Sun, Nov 16, 2014 at 4:22 PM, 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 ?
> >
> > ----------------------------------------------------------------------
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> > utoronto.ca
> > In the body of the message put: signoff parkinsn
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> >
>
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