Nancy Martone's pallidotomy update 2 years later

Last week was Nancy's second anniversary of her first unilateral
pallidotomy on the right side of her brain which was followed six weeks
later by a unilateral on the left side. Nancy is 52 has had PD for 22
years and shows many late stage PD symptoms, most notably the stooped
posture, back pain and restless legs , beginning and end of dose
freezing and minor periodic mental confusion.

After much effort to adjust Nancy's medications, one hospitalization a
year ago (to deal with sleep deprivation and problems with medications),
 ten weeks of physical therapy, and a year of family counseling sessions
on how to deal with all that PD is doing to our lives, we are back on
track and continuing to look for the next therapy  that will allow us to
improve Nancy's quality of life yet one more time.

We  chose to write this now and share some of our story with you because
we are beginning to except the fact that we are losing the PD war, as
the disease progresses day after day, yet continue to experience
optimism that there are still many battles to be won and with each
victory much joy to be found in our current state.

Example, despite the fact  that we now use a walker, wheelchair, cane,
and whatever works for the situation at hand, yesterday was one of those
victories that we all need from time to time. I took Nancy out to the
golf course so she could establish an official 9 hole score for the
Parkinson's World Golf Tournament which ends June 15. As nature would
have it when we got to the second hole a Texas size rain storm blew
through and it was looking like this round of golf would be lost. We sat
under some Texas sized trees and relaxed and talked for about  half and
hour and low and behold the storm blew over and the course was still
very playable. Nancy  proceeded to shoot a 59 for the nine holes and
only had PD related difficulties on the last two holes as her meds were
wearing off and freezing and rigidity were trying to end her round of
golf. When we got home she called all her buddies to report on how well
she had done. It was a very nice day, rain and all.

Back to the pallidotomies. The terrible dykinesia that Nancy had
suffered remains virtually non existent. PD  tremors can only be
observed during periods of high stress and they are still minimal.
Speech remains good but it is getting faster and softer. Sometimes it's
fine but sometimes it approaches a whisper.  We argue about this one
because hearing in my left ear is diminishing a bit and it is hard to
tell  where the real truth lies.

End of dose freezing is the biggest disabler for Nancy. She becomes
quite immobile, essentially paralyzed until the new dose kicks in. She
also becomes quite immobile after consuming even the smallest amount of
protein. The protein blocks the sinement uptake and often will last a
couple of hours. Sometimes we plan for this and have the wheelchair
close by. These times are never pleasant but by anticipating them we can
often make the best of it. We have explained this condition to just
about all our friends. This is valuable for getting help with PD
understanding so it is no longer a big deal. But let me assure you the
freezing is a not fun. Freezing is now our highest priority and we are
going to visit the NIH next week in Washington in search of a new
therapy.

Back pain around L-3, L-4, L-5 is the number two problem we are
experiencing. What was minor scoliosis has been aggravated by years of
dyskinetic movements. There has been disc damage which may require
surgery but first we are trying botox injections into the lower back.
This treatment started two weeks ago. It's too early to say much about
it except that nothing negative has happened yet.

Driving is still possible, but only short distances, mostly because of
the end of dose freezing. Dozing at the wheel was a problem before and
immediately following the surgery but this is no longer a problem.
Really don't have any explanation for that.

Use of blue glasses is no longer required because the pallidotomy has
taken care of the dyskinesia. The blue glasses still seem to have a
tranquilizing effect when we can find them. (Now that we don't need them
we often can't find them.)

Night times continue to be a challenge. We are up a minimum of two times
per night. Usually associated with back pain, general PD discomfort
associated with stiffness and restlessness, and bathroom breaks. While
Nancy has adjusted to these night time interruptions pretty well, I have
not. Trying to go to work and be functional after multiple nighttime
interruptions for long periods of time was taking its toll on me and I
have elected to retire at the age of 52.

Giving up my professional career is creating some stress for me but I am
viewing this as having lost a battle not the war. I plan to focus on the
Udall bill and devote increasing amounts of time to PD support in the
Houston area and in the continuous search for a cure.

The post pallidotomy meds stack up like this.

Medicine                   Dose             Frequency
------------------------------------------------------------------------
-------------------
Sinemet                  10/100           11 total  1 1/2 hours apart
Permax                      1 mg           3 times per day
Effexor                     75 mg           2 times per day
Clozaril                    .25 mg          1 at night
Ativan                                           only as needed
Propoxy(pain)                               every four hours as needed(4
max)


Summary: pallidotomies eliminated dyskinesia, reduced the tremor, had no
effect on freezing, did  not effect speech, did not relieve lower back
disc damage. Pallidotomy did stabilize PD meds which work much better
now. Tolerance for CR and Eldepryl/Selegiline did not improve for day
time use but CR can be taken at night with benefit.

An attempt to change antidepressants from Prozac to Sersone was
disastrous and took months to sort out including a brief hospitalization
. Now Effexor has replaced both as the preferred antidepressant and is
working fine.

We would be happy to respond to questions.


Bob & Nancy Martone

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Kingwood, TX