Thanks, Ray. It's just that I know they can do better, with
more education re: PROGRAMMING. It's like they have this
magical device, but they are not quite sure how to use
it...
Carole Hercun

--- rayilynlee <[log in to unmask]> wrote:

> Carole, I am so sorry to hear you are having such trouble
> getting
> programmed.  It is good, I think, that you posted your
> experience.  One list
> member's mother had a bad experience - was knocked off
> the table by a
> programming jolt of juice.
>
> It certainly is no walk in the park.  In order to have it
> done twice, I
> hoped I would die on the operating table.  The discomfort
> level of speaking
> difficulty approaches pain.  Just keeping my mouth shut
> solves that one, but
> it is hard to communicate because I can't write either.
> However, I don't
> know how I would have been able to live with those killer
> tremors.
>
> We PWPs are stuck between a rock and a hard place.  It is
> not an easy
> choice.  We need better ones, for sure.
>
> Here's hoping they get you programmed correctly.  And
> soon, too.
>
> Ray
>
> Rayilyn Brown
> Board Member AZNPF
> Arizona Chapter National Parkinson's Foundation
> [log in to unmask]
> ----- Original Message -----
> From: "Carole Hercun" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Friday, January 04, 2008 6:20 AM
> Subject: Re: DBS results/An Experience
>
>
> > Ray, I keep reading all these wonderful
> >
> > DBS success stories, and while I am sure that the
> patients
> > are sincere and well-intentioned, I think it is
> important
> > to understand that it is no walk in the park. I thought
> I
> > was well prepared for my October of 2007 surgery. After
> > all, I was an R.N., had attended a conference on  the
> > subject, met with  a Medtronic rep, spoken in person to
> > fellow PWP's who had had the operation, watched the
> movie,
> > and emailed trusted internet friends. I thought I was
> > prepared. I wasn't.
> > Oh, it wasn't what i was worried about- the head
> shaving,
> > the drilling through  my skull, and the screwing in of
> the
> > halo apparatus. It was the little things- like the
> weight
> > of it as it held me pinned in one position like part of
> > some butterfly collection while my back spasms
> continued
> > for hours, during the pre-and post-op MRI's and the
> surgery
> > itself.
> > And the bigger things-like the programming that has
> been
> > going on for two months now, still with unsatisfactory
> > success. The man from Medtronic, who make the
> > neurotransformer, tells me there is no "book," and that
> he
> > services many of the major centers on the East Coast,
> and
> > that they "all do it differently." And that there are
> > literally thousands of settings.
> > In the meanwhile, as they tweak my settings yet again I
> > know how Elsa Lancaster got that streak of white hair
> in
> > "The Bride of Frankenstein."
> > In conclusion, let me say that I am not trying to
> > discourage anyone from DBS. It is one of the newer
> tools in
> > our  fight against Parkinson's and I believe you should
> use
> > any weapon you can get as you battle this monster. I
> just
> > want  to inject a dose of realism into the mix.
> > Carole Hercun
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > d
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > --- rayilynlee <[log in to unmask]> wrote:
> >
> >> Parkinson's treatment inspires hope
> >> SCOTT FONTAINE; [log in to unmask]
> >> Published: January 3rd, 2008 01:00 AM
> >> Every second of every day, battery packs embedded in
> Rich
> >> Hammermaster's
> >> chest send pulses of electricity through wires
> implanted
> >> on the sides of his
> >> neck to electrodes deep in his brain. The voltage of
> the
> >> electricity is
> >> low - if a static spark of the same strength jumped
> from
> >> a door handle to
> >> your hand, you wouldn't notice.
> >> The treatment is called deep-brain stimulation, and
> it's
> >> been approved in
> >> the United States for the past five years.
> >> It's not a cure, but the technology - described as a
> >> pacemaker for the
> >> brain - has improved the lives of Hammermaster and
> >> thousands of others with
> >> Parkinson's disease.
> >> "The first 15 minutes of your mornings are the
> toughest
> >> with Parkinson's,"
> >> said the Puyallup resident. "I had trouble getting out
> of
> >> bed. Since I've
> >> had the surgery, I can get right out of bed. I can
> turn
> >> over and kick my
> >> cover up. I couldn't do that without the volts."
> >> Parkinson's disease is marked by a deterioration of
> the
> >> brain cells that
> >> govern dopamine, the neurotransmitter that helps
> regulate
> >> neurons. When the
> >> brain has insufficient dopamine, some neurons work
> >> erratically. That leads
> >> to stiffness and other motor-activity symptoms in
> >> patients.
> >> Deep-brain stimulation doesn't actually stimulate the
> >> dopamine-producing
> >> cells, said Peter Nora, a neurosurgeon at Swedish
> Medical
> >> Center in Seattle.
> >> The electrodes quiet the cells. That's the general
> >> concept of how the
> >> surgery helps patients with Parkinson's.
> >> The specifics are a bit fuzzier.
> >> "The short explanation is nobody knows how it works or
> >> why it works," said
> >> Nora, who operated on Hammermaster and about 260 other
> >> patients. "We take an
> >> equation that's out of whack and restore it to
> something
> >> closer to normal
> >> activity."
> >> Doctors affix a frame to the skull to keep the head in
> >> place, and a CT scan
> >> is performed to target the location for the electrode:
> a
> >> 7-by-9-by-7-millimeter area. A hole is drilled in the
> >> skull, and the surgeon
> >> places the electrode in. The patient, still awake at
> this
>
=== message truncated ===



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