From: [log in to unmask] (John Cottingham)
Subject: Your Experience with VIM Deep Brain Stimulation
Date: Wed, 30 Aug 1995 11:43:29 -5 CDT
Status: R
 
Good Morning Don and Joanne:
 
Many of us who are "shakers", viewed with interest and admiration your
experiences after being implanted with a DBS device.
Would you mind replying to the list so all can gain from your experiences?
 
>We are interested in knowing how you were first diagnosed and can you
>remember any exposures or medicinal reactions that could be remotely
>linked to your subsequent diagnosis?
 
Spent five days in Hoag Memorial Hospital in Newport Beach, CA, in
1974, being examined/tested.  Doctors suspected a brain tumor, finally
diagnosed PD.
 
No specific pesticide or other chemical exposure other than "normal"
U.S. household and garden chemicals.
 
>Did you notice a tremor at anytime before being diagnosed? Where did it
>start and how did it progress? Which side was predominate, same side as
>your writing hand, or opposite?
 
Tremor was the reason for going to the doctor.
In retrospect, symptoms were observable (if we'd been watching) five years
 before diagnosis.
Started in left arm (right-handed); after several years, tremor proceded
to right arm, then to legs, finally (1993) full-body tremor.
The tremor was manageable until about 1991, worsened rapidly after that.
 
>In the last 5 years before your implant, what medications were you taking?
>Was your depression being treated, and with what?
 
Sinemet in ever-increasing doses (finally, a maximum of 2,800mg/day).
Eldepryl (taken as a matter of faith; didn't seem to do much).
Permax seemed to contribute to hallucinations; dumped it.
Could not tolerate Bromocriptine.
Have used Klonopin as muscle relaxant from time to time to alleviate
cramping so I could sleep (we didn't sleep 1991-94).
 
>Since the implant, how and how often do you use the (DBS) device? Have you
>developed a tolerance to the tingling/burning sensations when it is on?
 
Device is on all the time.  I used to turn it off at night but no longer do as
 I've grown used to a good night's sleep and can't sleep if it's off.
Tingling has never bothered me; when I was turning on, I experienced it
only about a minute when I activated.
 
>From your experience with the device how many hours a day could a user be
>able to use it? Can you change the batteries yourself and how often would a
>"max" user be expected to do so?
 
Twenty-four hours a day.  Batteries are like pacemaker batteries and have to be
 changed through surgery.  Currently, they are expected to last 3-5 years.
(Pacemaker batteries started out with an even shorter "shelf-life" and are
now expected to last at least a decade.)
The surgery for changing batteries can be an office visit, is more often
overnight in the hospital.  It is the same procedure as that for changing
pacemaker batteries.
 
>What kind's of things can you do now that you couldn't before the implant?
 
Can drive, can hike, can swim, can clean house, can drink with one hand,
don't spill my food in public (or private).  In all important respects
I am close to "normal"--whatever that is these days.
 
We consider the results "a miracle" (though it's "only" modern science);
so do my primary care physician (who after the operation told me I had
the worst case of tremor he'd seen), my neurologist, and our close friends
 
>I think my "20 Questions" time limit is up.
 
>Thanks for sharing with us.
 
>John Cottingham                     "KNOWLEDGE is of two kinds: we know
>[log in to unmask]                      a subject, or we know where we can
>OR                                   find information upon it."
>[log in to unmask]            Dr. Samuel Johnson
 
 
Glad to answer.
Would be happy to answer any other questions that may come up.
 
BTW, we had the surgery in Grenoble, France, done by Dr. A. Benabid,
who pioneered the technique and is training doctors throughout the
world (including U.S.).
 
Joanne and Don Sandstrom
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