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A little about myself - I am 64 and have had PD since 1985, I am English
but live in California. The progression of my PD has been fairly slow and
at my very best,few people realize that I have it. At my worst it is very
much how you describe your dad.  I do not have tremor or freezing.

The Brady Kinesia seems to proceed rigidity - that also seems true of
Dystonia. In my case it seems to start in my right toes and work its way up
my body.  I have sometimes described the rigidity as though I am full of
wet cement that is slowly hardening, until at its worst I am absolutely
immobile.  My legs and arms feel as though they weigh at least 300 lbs.a
piece, and my head becomes so heavy it leaves a dent in my armchair. When
this happens, which is almost always in the evening, it is painful, every
muscle seems to contract and I have like a vice grip around my rib cage,
which my caregiver can usually manage to massage away, so enabling me to
sleep. My breathing becomes fast and shallow and its easy to feel panicky,
I can completely identify with your dad.

To get to the point, which is whether your Dad is over medicated, I have
slowly been worked up to the following levels, by my specialist at the
"City of Hope" Parkinson's Center of Excellence" in Monrovia, California:
Sinemet CR 50/200, 2 x daily
Sinemet CR 25/100, 5 x daily
One half of a Sinemet 25/100, 4 x daily as a booster to get the CR started
for the first four doses of the day
Permax 0.25, 6 x daily
Amantadine 100, 2 x daily (currently not too effective)

I take the first dose at 6am and then every 3 to 4 hours thereafter,
depending on the size of the CR that I last took.  I take one of the small
CR's when I wake around 2am, sometimes I sleep after, sometimes not!  I
also take a mild anti-depressent, Pamelor, and a muscle relaxant at
bedtime.

If you compare the time since diagnosis for your Father, and my own
diagnosis it would seem to suggest that he is over medicated, and while
each persons PD can be different, some PD literature suggests, that sinemet
paridoxically can increase the symptoms its supposed to relieve. ( I'm sure
that many more people will answer your letter, so you should get a cross
section of opinion on too much, or too little sinemet. I would suggest that
you try to get your Dad an appointment with a Neurologist who specialises
in PD and has a reputation as a "fine tuner" of medication.  I cannot tell
you if there is a Parkinson's Center of Exellence, in Holland, but as soon
as this letter is published on the list, I'll bet someone out there will
know, and will tell us.

Your second question about whether your Dad's PD is progressive - I think
it is universally believed that PD is so, but I would like to tell your
Mother and Father to HANG IN THERE, because there is so much that can be
done to improve, if not reverse the symptoms and I am living proof of this;
a year ago I was a zombie, no energy or strength for anything, all I did
was to sit and sew, no appetite and down to 93lbs weight; I could hardly
string a coherent sentence. Now thanks to cutting back on meds.(no more
tranquilizers) plus exercising to music three times a week,and being
occupied with my hobbies all the day long, I feel a whole lot better.  I've
still got PD and I still have painful symptons, and I long for a few hours
of just plain simple comfort, ( I still get Dyskinesia from the slightest
GOOD or BAD stress) I don't get so panicky, and I know the feeling of not
being able to breathe WILL pass. I know I WILL be able to move again, and I
know that PD its self is not terminal. (although some complications can be)

That so many people with PD are so much worse in the evening, I think is
due to a combination of things:
1. A heavier than necessary evening meal
2. A lot of protein in the evening meal
3. Sitting - too much TV watching or reading without getting up to exercise
and you're done for: you've got to keep movin, movin, movin, until sheer
exhaustion force you to quit.
'
Finally Susanne, I want to tell your Dad that the best medication that any
PD'er can get, he already has,in fact he has a double helping, a caring
spouse and a daughter, who by her letter to us all, asking for help for her
Dad, shows her very deep caring.  They don't come any better Dad!

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