continuing the SUBJECT maybe something here will be of help to someone
else.
For the newcomers
Pre Pallidotomy toe/foot/leg cramping lower body tremor stiffness
Pallidotomy May 13 Dr. Lozano, Toronto, CA
Post Pallidotomy NO CRAMPING less body tremor gradually less stiffness
developed edema in both legs/feet VERY tired could fall asleep in a
wink
on advice of internist took 40mg waterpill and 5000units B12 100 B1 100
B6 on
alternative days corrected the problem in less than 8 weeks
still take the B vits
Visited neuro in September (regular scheduled visit) showed him my
progress
also discussed (thankx to Alan Bonander) reducing 25/100 > 10/100 agreed
reduced Parlodel 35% reduced Permax 30% reduced 50/200 30% agreed
NO INCREASE IN ANY SYMPTOMS
BUT..in October...I suffered from PD TRAUMA after undergoing three operations
to correct my right wrist badly broken when I fell asleep at the wheel in
late August.
Lots of front thigh (left side only had LEFT SIDE P) lots of freezing
and tremor
at SAME time each day... was getting a lousy 5-6 hours sleep...woke every
hour with leg pain. Agreed to INCREASE 10/100 from 9 > 12 daily in 1
litre OJ and to change time of the 1PM CR and increase one drink-dose at 8PM
Note: our neuro explained that before my "P" I was unable to accept any
additional meds.
after "P" one can accept controlled increases of pre-P Sinemet levels
without side effects
=================================================================
ALL THE ABOVE TO GET TO THIS POINT
Because I was sleeping only about 2 good hours and 3 broken hours my body
and my mind was falling apart
Chuck worked with my neuro to try the following protocol
take 1 x 25mg AMITRIPTYLINE (ELAVIL) at 9PM to relax me during hi stress
time
take 2 x 5mg AMBIEN (sleeping pill) at 10PM
take 2 x 50/200 Sinemet CR at 0100 instead of 10PM
RESULT
Using FORM 10 Parkinson's Disease Daily Diary which is used to track the
level of
ON/OFF and DYSKINESIA plus room to track times of sleep and meds EVERY 1/2
HR.
(I will try to draw a Form 10 here if anyone want to try this test)
level 4 unable to walk dyskinesia level 3
diasabling
level 3 walks with assistance level
2 troublesome
level 2 able to walk - very slowly
level 1 mild not a problem
level 1 able to walk - slowly
level 0 normal
In the first six days before the above changes and additional sleeping aids
I experienced 54 hours of combined levels 4 and 3
44 hours of combined levels 2 and 1
10 hours of level 0
36 hours of sleep average 6 hours per day
In the second six days after the above changes
I experienced 21 hours of combined levels 4 and 3
61 hours of combined levels 2 and 1
10 hours of level 0
52 hours of sleep average 9 hours per day
the pain is only slight and the freezing almost gone only slight tremor
IN MY CASE ITS OBVIOUS THAT SLEEP HAS IMPROVED MY LIFE QUALITY
Happy Thanksgiving to my extended family worldwide.
Joyce
