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Hello all,
 
As I read Don's 2 year report on Pallidotomy and felt so good for him and
realizing that this was one of the reasons that this list was formed , I
though I would share my five week old L>S> experience with you.  Surely, it
does not enjoy the same longevity but for me it was a milestone in my 11 year
fight (the last five with Sinemet) with PD.  So, here goes:
Before 1995 I will not go into now:
During the period from the beginning of 95 till November, my main and
increasing problem was with freezing, painfull stiffness and the worst
toe/foot cramping and spasms.  In October, I was almost a vegetable from the
physical and emotional trama.
 
During an "emergency" visit to the dr. the last week in October,  my daily
log sheets indicated a definite "OFF" distonic experience.  No matter what we
tried earlier in the year to adjust the meds worked only slightly or not at
all.
 
His suggestion was to liquidfy the Sinemet with a formula of each 25/100 X
100cc OJ with two level teaspoons of Ascorbic Acid (C) added.  This total
mixture would be divided by the number of hours (including the first one)
from early a.m. till late p.m. according to my pill dosage chart.
 
We began this experiment on the first saturday in November.
 
After about three days I noticed a definite reduction in the number of
cramping sessions.
After about one week I noticed a definite reduction in the LENGTH OF TIME of
the    freezing and stiffness.  The number of freezing and stiffness sessions
were about the     same.
After about three weeks, I REALIZED in retrospect and with my family's help
that since    the time I started the L>S> my whole appearence and demeanor
was changed.  I was    not so tense,  so hesitant of going out with fear of
freezing and cramping etc, and in
   fact it I HAD NO more cramping/spasms.  The freezing was almost time
predictable    and    therefore acceptable or controllable.
I faxed the dr. and we agreed the daily logs indicated that a "double" drink
at 10am and    another about 6pm might make an improvement since those were
the times of the         most severe freezing and stiffness.   We did it.
A few days later we conferred again by fax and decided to try 1/2 hour
(instead of one    hour drinks) during those two time frames.  This was
intended to "smooth" the dosage    or working meds in my system.
 
WITH EACH SUGGESTION AND IMPLEMINTATION THERE WAS ADDED BENEFIT.
 
It is now the beginning of my 6th week.
 
a)I have given up my daily companion (helper)
b)I have been able to get up and go from about 8am till at least 8pm
c)I have NOT used the wheelchair more than three times in five weeks and when
I did it   was mainly for our families convenience to a movie or dinner
during a stiffness time
d)I have NOT experienced more than three toe/foot cramping sessions and when
I did it
 was obviously caused by an external stress not related to PD
 
Last weekend during Thanksgiving, Chuck and I drove more than one hour
non-stop to NYC,  then WALKED (with a folded chair alongside just in case)
the city.  It was so successful and enjoyable that we did it two complete
days that weekend
 
Yesterday, Saturday our day started at 0700 and we fell into bed exhaused and
elated at the PERFECT day we had doing so many different things including
seeing the 3 hour movie Casino without even getting up from the theatre chair
once.
 
Now we look forward to each weekend alone together or with friends or family.
 
WE ARE FULLY AWARE THAT THIS COULD END INSTANTLY, but for the meantime I go
to bed each night saying THANK YOU !!!!
 
This has given me and my family a new lease on living.  Since we can predict
95% my daily bad periods (also around my monthly cycle) we have found a new
PD freedom.
 
SINCE THIS WORKED FOR ME,  IT MAY NOT BE FOR YOU.  PLEASE CONSULT FIRST
 
 
Joyce AND Chuck AND family