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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