Re: DBS RESULTS -- AN INFORMAL SURVEY

[hilary blue <yopwp@xxxxxxxxx>]

i have come out very strongly in favour of of dbs, but i must make cleaa th=
at it took me a long time to make up my mind - since a good friend died in =
2005 after having dbs surgery. in fact i waited until the benefits of the s=
urgery outweighed my fear of the possible risks.

and also they are requiring stringent testing in a number of fields(eg cogn=
ition, physiotherapy, balance and gait, etc) to see whether you are likely =
to benefit before you are even considered for the surgery. if you are still=
 in a good place i would not personally advise anyone to submit to the surg=
ery.=A0 it is brain surgery after all and carries a risk with it as does an=
y surgery.

hilary (PD since 1973)

--- On Mon, 3/22/10, Steve Rack <srack@xxxxxxxxx> wrote:

From: Steve Rack <srack@xxxxxxxxx>
Subject: Re: DBS RESULTS -- AN INFORMAL SURVEY
To: PARKINSN@xxxxxxxxxxxxxxxxxxxx
Date: Monday, March 22, 2010, 10:20 PM

> I too would welcome=A0 an opportunity to discuss=A0 with you the results =
of your surveyPlease include me in this discussion, As I have not had dbs e=
ven after 12 years of PD and my life is=A0 not bad with good diet and exerc=
ise and good medi=A0 management. I dont know how long=A0 I can keep it up s=
o eventually i may need to go for DBS.My Neuro consultant does not believe =
I should have dbs. He does not believe the=A0 down side is made known as we=
 only hear of successes andrarely about the cabbages. I dont know what to d=
o. My quality of life is too good to risk DBS just now and I wonder if with=
 the right medication and supplements and good lifestyle management discipl=
ines. I can continue to maintain a good quality of life at least for anothe=
r few years and avoid the risk of being a statistic for DBs on the negative=
 side.
> BEst Wishes
> Shekhar Nagarkar Age 62, diag 50,
>=20
I'm with you Shekhar,
I was diagnosed five years ago and am almost unmedicated save a handful of =
supplements and benztropine, an anticholinergic. The few people I've met wh=
o are "wired" all seem like they are worse off than I am. BUT, every one of=
 them say they are glad they have the DBS. Perhaps I need to look in the mi=
rror sometime :-)
BTW I am also disappointed by the tone of the Glutathion discussion. This l=
ist has always been a friendly and emotionally safe place. I hope we contin=
ue as such.
-- Steve in VT

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