Re: DBS/Are you turned off?

[Lee Wu <leewu58@xxxxxxxxxxxx>]

Hi Ray,
Sorry to hear about your "turn offs." Hand held magnets, can you not get the 
newer version Ray? The ARC (access review controller) is pretty easy to use ie 
check if you're on or off. Early days after neurostimulators were implanted I 
took my ARC everywhere. Then realised after some time I hadn't actually used it.
Tonight I returned from an overseas trip and realised I didn't have it with me 
just now when I started writing this... not such a good idea travelling without 
it I'm guessing!
 Just a quick warning to any fellow DBSers, security told me it was alright to 
go through the normal security system. I stood my ground and said no but only 
because I've been warned and was then given a quick pat down which has been the 
case every other time.
                               Cheers,
                                          Lee

rayilynlee <rayilynlee@xxxxxxx> wrote:
If you have had DBS you may face accidental turn offs like I have.

Year-and-a-half ago I had my magnet in my purse that I put around my neck to 
free my hands for walkers. I got accidentally turned off when I hugged someone 
and the purse with the magnet came in contact with my right implant.

Last Friday while wearing my "Life Alert" around my neck, I think my purse 
pressed on the Life Alert and my right implant. I got turned off. Called the 
neuros office and he wasn't there and nobody called me back. Later that night I 
got my magnet, put it
on my implant, and turned myself on. Monday I called Life Alert and of course 
they didn't know anything about DBS implants, no one does, but told me they had 
people with heart pacemakers wear the Life Alert on their wrists.

Someone finally called me the following Monday and told me to make an appt 
which I did for the next day. When I was telling Kathy, my helper what had 
happened (I sort of demonstrated) I got turned off again. When we got to 
doctors we found out he was at a different office. I had a horrible time but 
managed to get myself turned on again last night.

Saw neuro today at more distant location and implants are OK. He said you 
really have tp do some detective work to find out what it is that is turning 
you off, for one patient it was refrigerator door. He said he had one case 
where one implant was kaput.

Please email and share if you have had this problem. I think it is the Life 
Alert that is fouling me up, although I have had it for several months around 
my neck, swimming, etc. Apparently there are any number of things that can 
interfere with the implant., as the books warn you about them.

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Ray


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