Quote:
Originally Posted by jeanb
Sheryl, Your post really struck a chord with me.
Yes, how many pwp have been consulted by our local orgs when they are planning upcoming conferences?
I don't want to hear one more technical description of DBS surgery. Let's get information that is useful for us -- yes, like who is eligible, what are the side effects, how will we feel after the surgery, and from people who have had the surgery - what surprised them the most? and so on.
What a great example of why we need to knock on those doors and when the door opens a crack, push in and bring our own chairs to the table.
Jean
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Sheryl and Jean -- I agree completely. There are some techniques for doing this -- literally. If anyone else is ready to consider that option, let me know and I can share some things that have worked for me and others on other issues.
BTW, Sheryl -- in the next 5 months or so, my book "Life With A Battery-Operated Brain: A Consumer Guide to Deep Brain Stimulation for Parkinson Disease, Essential Tremor and Dystonia" will be published. It answers those questions and more. I'll keep you posted on the exact release date.
Jackie