Re: ARC/Lee/Are you turned off?

[rayilynlee <rayilynlee@xxxxxxx>]

Lee, I have a machine that will tell me if I am on/off and if the battery is
dead or just off.   I've never used this thing because I have double vision
and trouble reading the instructions.  It is called Medtronic Access Review
for models 7438 and 7426 neurostimulators.  It is worth about $1700-1800 and
was given to me by Scripps Clinic after much trouble.  It doesn't look like
the programming device my neuro and the nurse at  Scripps used.  My neuro
told me that at first people were not even given magnets.  This sounds like
what you have. Now if I could just use it.   You have inspired me to try.
Thank you so much, Lee.
Your friend, Ray
----- Original Message -----
From: "Lee Wu" <leewu58@xxxxxxxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Thursday, September 29, 2005 2:41 AM
Subject: Re: DBS/Are you turned off?


> 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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