NeuroTalk Support Groups - Deep Brain Stimulation

Quote:

Originally Posted by BUZZZ (Post 786074)

Hi everyone, I don't post much but I read with interest almost every day and am so greatful to have this site!
I have been going tru testing for a D.B.S. at Vanderbuilt Hospital. been diagnosed for 13 years. I am still not compleatly convinced that this is the right thing to do! Comments?
By the way " Aloe Vera" works great! sleeping better, longer on time better digestion etc wall mart $11.00 gal!

I have been pondering DBS too..Is it the right thing to do?..It is a big decision, that guess I am not ready to make

During the past 18 months or so, I crossed that line in the sand where the majority of us start to slowly lose our independence..off time..dyskinesia..freeezing.. wont drive when Im off, etc..Trying to make a sandwich when off, isnt worth the effort that is involved..I had my first symptom about 9 years ago, dx 2004..Ive seen miracles with DBS, and Ive seen trainwreaks..I was at the U of Washington hospital a few years ago, and saw Harley get zapped real bad during DBS programming, not once, but twice during the same session..That was the longest 5 seconds Ive ever witnessed in my life..After that, I swore Id never have one of those things put in my head..ever!!...but when you start to hurt, and you begin to feel that the doors are starting to close around you, you start to get desperate

I am grateful for this forum also, especially for the people, who were here before me, who have talked about how they got through the things I am going through now..The first few years after dx, pd wasnt that much of a problem..then alll of a sudden it changes, and then I realized, that up untill I crossed that line in the sand, I really didntt know what pd was all about..I was looking, but I could not see..I was listening, but I could not hear, untill I felt it myself

I dont know if DBS is right for me..I am the akinetic type, and because of some of the symptoms I have, Im not sure I would be a good candidate

A woman I know had it done twice by two different Drs, and she is worse now than she was to begin with..When the Dr who did the second surgery was asked why it didnt work?..His reply.."I dont know?"..Thats the **** that scares me

Then there's a couple who come to my support group..The husband had DBS years ago, and if you didnt know them, you couldnt tell which one has the pd!!

Take it "One day at a time" I guess :winky:

My thoughts, for what its worth