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Old 06-12-2010, 08:49 PM
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reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default Bingo!!

" body weakness, not off . but accompanies it. the kind of weakness that renders you useless, can't even pick something up."

Exactly what I"m talking about. I agree that it is different than OFFs and they do intertwine. Useless, indeed. Impossible to even type.

That is what happens when the potassium in your blood is moved into the muscle cells in a manner similar to the way that glucose is moved in a similar manner. If I am weak, I think it is a periodic paralysis (PP) attack. It will not respond to PD meds. All I can do is wait. Mine last about two to four hours. Sometimes people have them that last for days.

Some other things that describe the experience-
The weakness begins in the extremities. The lower legs the first to go followed quickly by hands and forearms. The trunk is barely affected.

From first hint of the impending storm to paralysis takes fifteen minutes.

About the midpoint, the turnaround is announced by the bladder as the kidneys work at balancing something. The legs remain weak but can now be moved a little. They can be bent more easily than they can be straightened.

As the attack runs its course, what I call the "squirmies" set in as the muscles demand to be stretched. Then suddenly it is like the ice breaking on some great river and in less than five minutes it is over.

Again, this describes what I believe is a form of paralysis associated with PD or sinemet. As Paula said, it can run parallel with OFFs. The key difference is muscle tone. Low in an attack. High when OFF.

This has some important things that go with it, including a near cure. I am, as I said, a creature who needs stability in these things. Everyone does, I just need it more than most. The body has exquisite control of this area for that reason. Each cell operates by storing molecules of one or the other electrolytes within the cell somewhat like we might inflate a balloon by storing air molecules in it. Where we might use our lungs as pumps to fill it, so too does the cell ha ve tiny pumps to move the different ions around to create pressure differences. And just as we can release the neck of the ballon and send it flying, so too can the cell get things done by opening tiny gates and unleashing the pentup energy.

All this elaborate system of pumps and gates requires energy and lots of it. Each of our cells has floating within it thousands of tiny Honda generators called mitochondria. And in PD they need the spark plugs changed. And so, they are forced to try this balancing act with undependable tools and they just can't do it. Some of youmay remember the story last year about methylene blue (that one died quick, didn't it?). These tiny, messed up generators was what that was all about.

Dr. Ames did that work. But he has also published a lot more on doing the same thing with the common supplements acetyl-L-carnitine and alpha lipoic acid. I have taken it for years but with a bit of faith and guesswork on dosing. These two will give your mitochondria a tuneup if you get the dose right. That will, in theory, then give your cells the energy to run the machinery and maintain that critical balance.

I doubled my dose starting yesterday and have been tickled pink. I was having three attacks per day but had only one yesterday and none today.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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