On 12/22 Jim Cordy wrote:

>I have good news for all of you who know Margaret
>Tuchman and/or have Parkinson's.  I visited Margaret
>in Princeton today.

>When you're accustomed to seeing your friends steadily
>deteriorate,  it is a true joy to see someone
>dramatically improve.

>Observing the change for Margaret has to be great news
>for all who have PD.  There is a treatment for those
>whose drugs have done as much as they can.

>Margaret, seeing the new improved version was an
>unexpected and wonderful Christmas present.  Make sure
>to take time off from curing PD to have fun.

Jim Cordy

Dear List Members,

It was wonderful to visit with Deb and Jim Cordy-- and I thank Deb for the
fashion commentary--I don't think  that Jim would know a boa (scarf) from a
snake. But I am very flattered and thank him for the glowing report.

Jim makes a very important observation, "there is a treatment for those
whose drugs have done as much as they can." My Deep Brain Stimulation of the
Subthalamic Nucleus (DBS/STN) has given me a new lease on life -- or at
least the quality of my daily existence has changed measurably. Of course I
still have PD, though some of my symptoms are but a memory, others are still
around perhaps more infrequently or with lesser intensity. Of the major
symptoms of PD: tremor, rigidity, slowness of movement, lack of movement - I
have none. I had some problems with balance post surgically -- a few falls
but I was adjusted and am no longer troubled with it. I must also tell you
that I am training myself to be conscious of how my body is positioned and I
no longer allow myself to move without deliberation and thinking. I have
stamina, have no cognitive problems, have some problems finding the right
words at times, but I am older and don't really know what I can attribute to
PD and what to ageing. I know that my body needs exercise and mind needs to
be occupied. It is amazing how quickly I can lose fluidity in either one. A
cold can knock me for a loop. I have cut back on meds since surgery, and
have recently switched from regular Sinemet to CR. I am not measuring the
success of the surgery by the number of pills I take. My dyskinesias have
disappeared completely immediately after surgery and that along with the
lack of tremors have put 25 pounds on me. I am not happy with that
development, but I'll gladly exchange dieting for dyskinesias.

I go to New York for adjustments when I need it -- I've averaged needing
adjustments about every 8 weeks. Depending on what was changed last in my
routine, I get to chose between adjustment or titration. Since I cannot
adjust myself, it is a decision that I make with my neurologist. I think
that after having PD for a while - I was diagnosed in 1980, we tend to "play
doctor" and increase or decrease dosages without much thought. Having
DBS/STN, forces one to work closely with the neurologist. The surgical and
follow-up protocol varies from center to center. Drs. Kelly, Beric and
Sterio have an open door policy. That, in combination with my geographic
proximity makes it easy to "run in" to NYU for a little tweaking. This is
one of the issues you must consider before choosing a surgical team.

It is not easy to decide whether to have surgery or continue to add/change
yet another medication. Insurance coverage is a big issue. There is no
federal standard for coverage for DBS/STN. You have to explore each state
and each company. Once, the FDA approves (we've been waiting for YEARS!) the
procedure for PD, insurance coverage will become more standard. Until then,
the patient has to find a facility where the surgical team & facility is
approved for this (bi-lateral STN) procedure and argue their case with their
insurance carrier. This is an unconscionable situation to be placed in,
given that the mere decision to have surgery is hard enough. Unfortunately,
once again we will have to push our elected officials to act on our behalf.

I am sorry, I did not mean to be so wordy. We have been working on getting
our website, Re-Wired for Life, ready to serve DBS/STN patients. Re-wired is
a nonprofit organization whose mission is to:
1- educate people considering DBS
2- give support and share information via a Patient Forum and FAQ about the
fears and triumphs; the best and the worse experiences with health
professionals; the kind of questions that we, the patients find more easy to
ask our fellow patients
3- provide a broad based look at what progress or problems we face by
completing a patient survey. Patients answer questions that are directly
entered into a database. This information will be coded and anonymous. We
will ask for a commitment to update every six months for a total of three
years. The patient will have access to update their own file by entering
their password and the physician will need only to agree to participate by
providing a copy of a section of the universally used scale (UPDRS) to
Re-Wired for Life. The benefit to the patient population will be in getting
reports - as the database grows - of statistical information and most
importantly, finding out how long does the benefits of STN last.  These
reports will enhance our understanding of the surgical procedure, the
problems we face with adjustments and yet not threaten the physicians
because their identity is anonymous. Cooperation of an international group
of surgeons and neurologists has already been assured as Drs. Kelly and
Beric discussed the issue of the survey.

One of the hats I am wearing is to get this website up & running. We have
plans to make the survey accessible by the beginning of the new year.
Meanwhile, those who have questions about DBS can visit the site:
http://www.rewiredforlife.org.  The Patient Forum and FAQ pages are live and
functional though still in process of development . If you have questions
and comments - please write to me, [log in to unmask]

I wish everyone peace, joy and love during this holiday season and a cure
for PD in in the new year.

Margaret Tuchman
dob 1941, dx 1980, bi-DBS/STN 2000

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn