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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
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Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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