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Posted by Lory on October 02, 2000 at 08:01:59:

In Reply to: Re: Parkinson's disease (experimental) DBS support group posted by SANDY on September 26, 2000 at 23:52:22:

: : : : : I wonder if anyone out there knows of a support group for people who have had the experimental procedure DBS.
: : : : : I have a friend who recently had it and would like to talk with others who have too.

: : : : : Thanks!
: : : : Hello,
: : : : i am going to have a dbs probably before Cnristmas.

: : : : if you feel okay about sharing you impressions and any observations you might have gathered, i would certainly like to hear them--

: : : : take care--pete

: : : Looks like you are going to beat me on the surgery date pete. I am still waiting to get referred to KU. Jacqueline, I would also be interested in exchanging our experiences, if I can ever have the surgery. Bruce
: : =================
: : Jacqueline-
: : I had DBS May of 99 and would be happy to write to your friend to compare notes. Our hospital had a 5 year reunion in April 2000 for all sorts of brain surgery for PD. It was amazing that you couldn't look around the room and pick out the PWP. Someone thought my HUSBAND had it (he wasn't smiling much!)
: : CaroleSCar@aol.com
: : =============================

: I think we have the beginnings of a support group now. I, too, hope to have DBS before the year end. That WAS an amazing reunion - not being able to pick out the PWP. That sure does give us "almosts" a lot of hope. Thanks for sharing.
Thanks, folks, for these notes. I go to Porland, OR to OHSU tomorrow, and will discuss this option with MDC then. Will keep you posted on me, and you are all in my thoughts as you inch your way towards surgery. Best of luck. Lory


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