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Pat Schark, fellow patient, who has experienced much the same morning start
up problems as I wrote to the list and me.  I appreciate your response.
The dystonia is especially annoying .. seems too mildly worded.  I am in
pain and unable to ignore it and do much of anything other than force the
straightening of the muscle.  The shiatsu machine helped a while, Alan's
suggestion of rolling on a ball works sometimes (and is cheap and
portable), but rubbing and flexing and kneading et cetera are not always
doable for the time duration required.
I agree that "if I get up, ..., move around, and exercise" after taking
meds, the meds take effect sooner.  Taking a shower takes me about 20
minutes and I admit that I have not pushed myself to do that every morning
for several years now.
Please describe the process of "standing on my shoulders" which you find
"is especially helpful".
You also indicated that you "like to use the computer, because that is one
thing I do better when I'm "off.""  I can not use the computer while my
left (good side) foot is painfully pulling itself into a pretzel.
My brainstorming and studying about dystonia lead me to trying to analyze
how the right foot focal dystonia that I had difficulty with for a
prolonged period itself was brought about.  Was it due to l-dopa/carbidopa?
It was, and is, non-typical in that the muscle pulling the great toe upward
is involved primarily.  My conjectures about that history of gradually
worsening folowed by eventual changes in ability to regain some control of
being able to consciously relax .. or somehow minimize the likelihood that
it will progress to a cramped, twisted pain.
I am sure that my left side is bradykinetic, but there is little else
symptomatic on the left side, yet this foot started curling down and inward
perhaps six months ago .. and sometimes goes into having the toe muscles
pulling up and down both at once with multiple muscles cramping to pain
level.
The dystonia writings indicate classifications into idiopathic, primary,
secondary (from other diseases), dopa responsive, et cetera as well as
spasmodic, painful, non-painful, and there are many conjectures that these
are often due to striatal neural mal- or over- functioning.  The drugs
tried are many .. and response varies and changes with time.
I am wondering if restless leg syndrome is dystonia?  just a different
portion or category of muscles involved?
Are all of these proximately related to striatal neural movement 'feedback"
transmissions blockage?  Id est, are the pain signals getting to the
cortex(?) pain sites but not to the motor movement monitoring sites.  The
pins and needles, electric shocks, RLS symptoms may be cramped shiverering
muscles? if there are such things.  Or perhaps they are similar to the
sensations when blood returns after effectively being tourniqueted for a
long time in a limb?
One more thought and I will quit for this session.  Can I achieve proper
range of dopamine in all neural networks via more appropriate med ingestion
schedule? .. such that there is not shortage upon arising .. no need for a
'kick start'.  I would like to try a capsule for taking half or whole
Sinemet CR before retiring such that the capsule would be stomach dissolved
after 4 to 5 hours.  This would be easier than having to awaken, take
medication, and fall asleep again (such that the disconnect of the muscle
movement neural network that 'defines' sleep state allows the drug to get
to the striatum) without having the dystonia reach the painful level.  Any
pharmacy expertise or suggestion of something available.  Gelatin capsules
provide no delay. I don't have easy access to a ball of fat which could
work, but does not seem optimum.
Piet Hein wrote:
I'd like to know
what this whole show
is all about
before it's out.
I think his thoughts were about the metaphysical meaning of life.  and are
well crafted.  My seeker - learner - curiosity nature has me on the equally
difficult path of trying to know it all.  I have zero probability of
achieving that goal, but living is the process of doing our thing.  Lurking
is spectating .. not living.  The rules of brainstorming are civil, adult,
positive, inputting.
 
Ron  <[log in to unmask]> Ronald F. Vetter