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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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