Re: DBS info?

[rayilynlee <rayilynlee@xxxxxxx>]

Yes.  I'm a retired teacher and also someone who loves to talk plus it just 
makes communication so difficult.  Doesn't mean this would happen to you.
Ray
Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
rbrown@xxxxxxxxx
----- Original Message ----- 
From: "Louis Steinberg" <lou@xxxxxxxxxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Thursday, April 17, 2008 3:19 AM
Subject: Re: DBS info?


> Thank  you for your reply.
>
> Do I understand correctly that the DBS made speaking harder?  That  would 
> be a big problem - I am a college professor and  make my living  by 
> lecturing.
>
>
> On Apr 14, 2008, at 1:37 PM, rayilynlee wrote:
>
> > Louis
> >
> > I had 2 DBSs in 2003 (one was a redo) and they stopped my tremors  and 
> > seem to have arrested my other symptopms where they were at  that time, 
> > with the exception of making speaking extremly difficult.
> >
> > Like witih most PD treatments there are mixed results, but I do  believe 
> > that you can almost count on tremor being controlled (DBS  is also used 
> > for essential tremor) if that is a major symptom and  concern. If you 
> > don't  have tremor you might not want to consider it.
> >
> > I don't take ANY PD meds, but Sinemet only worked ONCE anyway.   Many 
> > people report hey can reduce there meds.
> >
> > No, you can't have an MRI or CPR.  I have not travelled since 1999,  but 
> > I would guess airline security could be a problem because it  could turn 
> > your neurotransmitters OFF.   With my added speaking  difficulty, I would 
> > not look forward to explaining my condition to  airline security 
> > personnel.
> >
> > The major risk seems to be infection, although stroke is a  possibility 
> > and even death, but I think the mortality rate is very  low.  I beat the 
> > odds.  I did not get my life back, but life would  have been unbearable 
> > without it.
> >
> > Ray
> > Rayilyn Brown
> > Board Member AZNPF
> > Arizona Chapter National Parkinson's Foundation
> > rbrown@xxxxxxxxx
> > ----- Original Message ----- From: "Louis Steinberg" 
> > <lou@xxxxxxxxxxxxxx>
> > To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
> > Sent: Sunday, April 13, 2008 8:05 AM
> > Subject: DBS info?
> >
> >
> > > Hi all.  I am beginning to consider DBS surgery for my PD, and I  am 
> > > wondering if anyone can point me to information on the plusses  and 
> > > minuses of this treatment. I am particularly interested in
> > >  - probability of bad effects (e.g. stroke)
> > > - what symptoms are and are not improved
> > > - restrictions in what you can do because of the wiring (eg can  you 
> > > take an airplane flight?  get an mri? ..)
> > >
> > > Thanks for any pointers / personal experiences.
> > >
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