Print

Print


Dear All,

Just wanted to share our support group meeting last night with you.  One of
our members met this couple in the waiting room of a neurosurgeon; the man
had recently undergone DBS and the transformation was so pronounced that
said member invited him to speak at our meeting.  After much arranging we
ended up having not only the couple but also the Exec. Dir. of the
Neurological Institute at OUHSC and the Research Ph.D. who works with the
patient to program and design the setting of the device.  .The evening was
a total success--over 60 people (we're a small suburban s.g. but I put an
article in the papers) heard Tom talk about how his symptoms developed
rapidly, both essential tremor and PD, until he was confined to a wheel
chair and had to be fed by his wife.  He talked about the operation and
demonstrated how the magnet turns off the  device and the wild waving
tremor returns; another swipe and, like magic, the tremor ceases.   The
surgery was done August 28 and he shared with us his golf score of last
week--a 74!  A short video clip of the surgery from a local broadcast was
shown and then the technician took over and explained the device and
surgery in terms we could all understand (a truly gifted speaker).  The
questions flew fast and furious and each was answered thoroughly and
adequately. Tom's wife was persuaded to tell her experiences as caregiver
and the E.D. gave an overview of the Institute's growing capabilities and
explained items like insurance coverage.

We're a new group, less than two years old, and have had excellent luck
getting people to speak to us, but this hat trick is the best  yet.  Just
had to brag a bit.

Best,

Kathy Kunz, (63/4/6)