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On Tues. Aug 13 Phillip Dunn wrote:

<I am on a very high daily sinemet dose...total 2625 (mgs.)  Thats a lot, but
without this amount, I can't walk. In fact I often have to <double up...after
meals,(more sinemet) and it doesn't seem to matter what the food is: protein or
other. help!   I get fairly savage <dyskinesia (understandably) but no other
side effects.....The muscle tightness in the lower legs is very strong but not
cramped.  Has <anyone any suggestions. If you say cut back the sinemet, I will
need something to unlock me....Perhaps I am at the end of the sinemet <trail?? I
know that some will say go straight to my Neuro and they are probably right; but
he always agees with  me about the dosage, <and finds it hard to believe that I
have Parkinsons, as when I go to his office, I make sure I am dosed to
perfection.

I'm in a similar situation Phillip.  I take 1600 mgs on an average day, 2000 on
a tough day.   I think exercise either increases my dopamine usage, increases
the reuptake rate in my brain or limits the amount of dopamine precursor that
passes through the blood-brain barrier.  I'm concerned about taking too much
Sinemet and frequently try to limit daily amounts.  It's a toss up which is
worse:  too much or too little.  I've studied the alternative medications and
discussed them with my neuro (a PD specialist with a national reputation). He
advises me to stick with Sinemet.  I also consider my quarterly neuro visit a
challenge and make sure I'm in mid-dose at appointment time.  I enjoy his
comment that if he didn't see so many Parkinsonians daily, he might not know I'm
one.  Both he and his nurses tell me they have a number of patients who take
more Sinemet than I do and get along fine.

I am not fond of this situation but don't see a better alternative so I'll keep
playing the same game.

I read on the list about members who have had PD for a long time, have problems
with severe on/off swings, dystonia, dyskinesia, etc. and only take small
amounts of Sinemet.  I suspect there is a wide variance in each person's
"Sinemet Processing Efficiency" (new medical term--coined today).  Your daily
2600 mgs, my 1600 and someone else's 400, after processing by our bodies, could
result in the same net "Medicinal Value" to each of us.  (Assumes each of the
three individuals is at about the same stage of PD).  That very unscientific
line of rationalization suggests to me that rather than compare the amount of
Sinemet we eat daily and worry because we take more than other people, someone
should come up with an accurate, low cost, universally available gadget for
determining 1) our current dopamine requirement  (measured on the Bonander
scale); 2) our current actual dopamine level (so you'll know how close you are
to being adequately medicated);  3) how much Sinemet and, to the nearest 5
minutes, when we should take it in order to remain at 9 or above on the Bonander
scale.  I envision this to be a piece of electronic equipment.  Something  like
Dick Tracy's wrist radio.  It will be manufactured under a grant from the
pharmaceutical companies, will be assembled by Swiss watchmakers in an 18 carat
gold case with a leather band, operate with sensors that measure
neurotransmitter levels, synaptic reuptake rates and relative states of arousal
by means of  random pattern molecular discharge analysis (a brand new
technique--don't look for it in your Scientific American any time soon) and cost
under $20.  Think it'll sell?

Regards,

Bob Bowling
Overland Park, KS
USA