Re: DBS RESULTS -- AN INFORMAL SURVEY

[Les Combs <lescombs@xxxxxxxxxxxxx>]

Thank you very much. I was convinced that I would never agree to such =
surgery. However, I just visited before Parkinson's patients at a =
veterans home last week. Neither of them have had DBS surgery. They were =
all in wheelchairs, and were not living the good life to say the least. =
What I came to realize is that if I'm going to make the decision to have =
the surgery, it has to be pretty soon. I don't know if I will have the =
physical and mental stamina to have it later. I am 63 years old, and I =
feel my cognitive status is declining.
  ----- Original Message -----=20
  From: hilary blue=20
  To: PARKINSN@xxxxxxxxxxxxxxxxxxxx=20
  Sent: Tuesday, March 23, 2010 5:05 PM
  Subject: Re: DBS RESULTS -- AN INFORMAL SURVEY


  i have come out very strongly in favour of of dbs, but i must make =
cleaa that 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 surgery outweighed my fear of the possible risks.

  and also they are requiring stringent testing in a number of fields(eg =
cognition, 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 surgery. it is brain surgery after all and carries a risk with it =
as does any 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 an opportunity to discuss with you the results =
of your surveyPlease include me in this discussion, As I have not had =
dbs even after 12 years of PD and my life is not bad with good diet and =
exercise and good medi management. I dont know how long I can keep it up =
so eventually i may need to go for DBS.My Neuro consultant does not =
believe I should have dbs. He does not believe the down side is made =
known as we only hear of successes andrarely about the cabbages. I dont =
know what to do. 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 disciplines. I can continue to maintain a good quality of =
life at least for another 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 who 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 mirror sometime :-)
  BTW I am also disappointed by the tone of the Glutathion discussion. =
This list has always been a friendly and emotionally safe place. I hope =
we continue as such.
  -- Steve in VT

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       =20

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