Dear Joan,

Thanks you for sharing your experience--it's like everything else with
this disease and it's therapies--there are as many different experiences
as there are individuals.  I hope your next "tune up" brings greater
results.

Thanks again,

Charlotte

On Tue, 2 Jul 2002 08:02:28 -0400 Joan Holliday <[log in to unmask]> writes:
> Charlotte--
> I have a speech problem  it seems whenever I have brain surgery.  My
> pallidatomy left me speechless for about six weeks--the surgeon said
> he had
> never seen anyone with as many speech cells as I had but after two
> or three
> sessions of therapy (and lots of practice at home) it returned to
> normal.
> Then the DBS ran into the same problem--the surgeon, I think, was
> hampered
> in what he could do with other areas because of the speech cells.
> This also
> lengthened the time of the surgery  by a couple of hours
> which was a disadvantgage.
>
> I really am happy about the results of the DBS---I notice more each
> day.
> They are small gains but practical ones--walking w/o freezing which
> allows
> me to cross the room faster, get out of a chair easier, and using
> the
> bathroom without help.  My  aide says she thinks my speech has
> improved -- I
> don't notice much difference.  I'm hoping for more improvement--they
> seem to
> think I should give it four months or so.  The period  between the
> implementation and turning on (in my case about three weeks) were
> terrible--lack of balance, walking poorly, etc.   My main problems
> now are
> the arthritis pain--I was not a prime candidate for this
> surgery--too many
> other things wrong with me, too old (69) and disease too far
> advanced (25
> yrs since diagnosed.   I'll let you know what the next tune up
> brings.  One
> thing I've learned is not to expect a miracle.
>
> Joan
>
>
>
>
>
>
>
>
>  Original Message -----
> From: "charlotte A mancuso" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Monday, July 01, 2002 1:38 PM
> Subject: Re: Bilateral DBS
>
>
> > Hello Joan and others,
> >
> > I've been reading this thread for a few days, and it sounds to me
> that
> > while I've heard of some people having a wonderful response to the
> DBS, a
> > lot of those who have posted here have had a mediocre benefit. Is
> that
> > so, and have any of you gotten worse, as you have on one side, or
> were
> > left with any damage, like speech problems? Anybody had an
> improvement in
> > Akinesia, Bradykenisia, use of fingers, less dragging the poor
> side,
> > better sleep/more energy? I have visited a web site on this topic,
> but I
> > didn't see many individual stories on how they did.
> >
> >  I'm considering DBS/STN, and I don't as yet have any dyskinesia,
> but I
> > have dystonia, and pain on my right side, my more affected side,
> which
> > has recently become a real problem.  I had my Sinemet and Requip
> > increased to a good benefit, but I think that has increased the
> dystonia.
> > So I'm chasing my tail with relieving PD and creating other
> disabling
> > side effects, which I'm sure you are all too familiar with, and is
> one
> > reason I'm considering DBS.
> >
> > I would very much appreciate anything you wish to share with me.
> >
> > Charlotte Mancuso
> >
> > On Mon, 1 Jul 2002 08:55:22 -0400 Joan Holliday <[log in to unmask]>
> writes:
> > > I'm probably jumping the gun here as I just had my DBS (both
> sides at
> > > once)
> > > in May and June of this year and have only had one session since
> > > trying to
> > > get adjusted.   I don't see the doctor/adjuster until the middle
> of
> > > July.  I
> > > haven't noticed any hand improvement (still can't write, cut
> food,
> > > or sew}
> > > but am walking without freezing and getting out of chairs w/o a
> tug.
> > > At the
> > > visit where they first turned me on they chose not to reduce the
> > > drugs so
> > > I'm struggling with the jerks which I hate.  I decided to
> gradually
> > > reduce
> > > my dosage of sinemet and permax but haven't found the magic
> > > combination yet.
> > > I haven't experimented with turning either generator on and
> off--in
> > > fact I'm
> > > not sure when they are on except I can walk better with them on
> and
> > > they
> > > told me to leave them on so I assume they are still working.   I
> > > don't have
> > > the instrument which  tells you whether you are on or off
> because I
> > > didn't
> > > want to spend the $2,000.  I have been struggling with this
> crazy
> > > disease
> > > since 1977 and have spent a substantial sum of money attempting
> to
> > > control
> > > it.  DBS was my last hurrah.
> > >
> > > Good luck to all of you.   Joan
> > >
> > >
> > > ----- Original Message -----
> > > From: "RON HEIMBACK" <[log in to unmask]>
> > > To: <[log in to unmask]>
> > > Sent: Sunday, June 30, 2002 10:49 PM
> > > Subject: Bilateral DBS
> > >
> > >
> > > > My wife had DBS in April and March, 2002.  The first operation
> > > provided
> > > > wonderful relief, however the second did not.  We recently
> tried
> > > turning
> > > > off her second stimulator with great success.  She is able to
> live
> > > a
> > > > normal life now.  We only turn on the second stimulator when
> the
> > > tremor
> > > > in her leg bothers her.  This is only turned on for a short
> time
> > > [15
> > > > minutes or so] occasionally as this stimulation disturbs her
> > > balance and
> > > > ability to walk.  Has anyone else had a similar experience?
> > > > Ron
> > > >
> > > >
> > >
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