Dear People,

It's been a while since I posted, I've been keeping up to
date reading the mail thanks to
PIENO and been busy raising funds for research which is what
we do
at the Parkinson Alliance.

I decided to have DBS at the end of last summer, I had a
long talk with
husband and friends and we agreed that this was a good
temporary step
 to take until the cure is found.

I had enough of the unpredictability of meds.  Dyskinesia
during the day and,
my nightly bradykinesia with the accompanying stutter steps
were the enemy.
I needed  to feel better NOW! The only question was, where
to have it done??

I lucked out. The NYU School of Medicine,- a mere hour
away - boasted an
excellent surgical team. My friend, Jim Maurer, observed
their precision teamwork
first hand, he had scrubbed and was present for an actual
procedure and his
recommendation was to meet with Dr. Kelly and the team. We
attended
one of their seminars. In fact, I dragged along the editors
of Voices from
the Parking Lot: Joan & Stan Snyder and Jo and Dennis
Greene. They were
visiting NY for the Unity Walk and celebrating the
publishing of our anthology,
Voices from the Parking Lot.

Anyway, on 12/28/00 I had bilateral STN. My stimulator was
turned on two weeks
after surgery and I've had 7 adjustments since.  Each
adjustment has produced
improvement, some minor--some significant. This is where one
has to be patient
and persevere.  I know that STN has not cured my
"debilitating progressive condition",
but sometimes I find it hard to believe that I am not
disease free.
I no longer have dyskinesia or bradykinesia with the
accompanying stutter-steps.
I haven't bumped into anything, nor fallen, I don't have the
pain in my neck & shoulder,
if I look in the mirror I see a symmetrical face, my left
eyelid does not droop,
I can smile, my voice is ok and I feel good. On the other
hand, I still take the same
amount of sinemet (9 x 10/100), though I've cut out Tasmar
and halved my daily
dose of cabergoline. So, I am feeling better than I have
felt since I cannot remember
when and I am taking less medication.

I would like to  quote from John Cottingham's post to
support some very important
 points of the DBS/STN story:

"It seems like Medtronics has developed a "Swiss Army knife"
for
neurosurgeons. It alone can't cure anything but used in
conjunction with
medication titration and proper programming can greatly
improve the quality
of life. That short of finding a cure, is very important.

The pioneers in the list family who have had DBS generally
have achieved good
success but it requires patience and perseverance.

I know of programs that offer DBS on a "carry-out" basis and
others that offer shorter
"on table" times but your priority should be on the
accessibility of follow-up care and
consultation. Most all of the institutional programs prefer
that you receive your testing
and follow-up care at their facility with their staff. Some
travel great distances to
participate but on the whole, it is best to wait until the
procedure is offered in your area,
since frequent programming visits can be necessary.

The peer reviewed journals in the next five years will
include studies done right now.
Following up with the team you select ensures that the
studies will be meaningful."

There are a number of very important points here:

My decision to have surgery came as a result of thorough
research and fully
understanding the procedure and post surgery adjustments.
Dr. Baric, the
neurophysiologist looked straight into my eyes during our
pre-surgery visit and said:
" commit right now that you will always be careful and not
jeopardize the stimulator
or the surgery. If you are unwilling to take this very
seriously, I don't want to waste
time, energy and money."

The surgical team should include experienced
neurophysiologist(s) who participate in
the surgery AND provide the post-operative adjustments. The
distance traveled to
get on-going follow up is important, though quite a few STN
patients fly in to New
York to get their adjustments.

People considering DBS/STN should actually handle the
battery operated pulse
generators and  the steriotactic headgear. I thought the
units were quite heavy
and the "halo" was something  that Hannibal Lecters of
Silence of the Lambs
should be wearing.

As soon as FDA approves the use of the Medtronic stimulator
and the battery
operated pulse generators for Parkinson's, we can look
forward to technical
improvements of the instrumentation  Some advancements are
already in use in
Europe. The one I am waiting for is being hooked up  via
phone & internet to the
doctor, so she/he can adjust the patient video-phonically(my
term)

But the hardware is insignificant when contrasted to the
value of the experience
of the DBS/STN  surgical team. I was fortunate in finding
The NYU Center for the Study and Treatment of
Movement Disorders, NYU School of Medicine:
Dr. Patrick Kelly, M. D., F.A.C.S.,Professor and Chairman,
Department of Neurosurgery,
Dr. A. Beric, M.D., D. Sc. Associate Professor of Neurology,
Director of Clinical Neurophysiology,
Dr.D. Sterio, M.D., Ph.D., Research Associate Professor
Department of Neurosurgery,
Kenneth Perrine. PhD., ABCN, Research Assistant Professor,
expert in clinical neuropsychology,
David Eidelberg, M.D. Professor, Department of Neurology and
Neurosurgery, authority on the
use of functional brain imaging, Patricia Taverna, RN. MA.
ANP-C, Adult Nurse Practitioner,
and Anne O'Sullivan Administrator, who holds the whole team
together, and is the contact
 for the patient/family for all issues and questions.

My story would be incomplete if it did not include a
WARNING.  I am posting a separate
message about my experience with Xanax (alprazolam).

If anyone has comments or questions, please email me at
[log in to unmask] and I
will gladly answer your questions.
Margaret



The Parkinson Alliance grows your donation
........twice the research for your dollar!

The Parkinson Alliance
211 College Rd E. - 3rd Fl
Princeton, NJ 08540
ph  800.579-8440
fax  609-688--0875
[log in to unmask]
www.parkinsonalliance.net