Laura, darling, I could hug you! I could have written almost your entire post! And our little group just may have stumbled onto something important. Maybe VERY important.

First, let me outline what I see as the core experience, because it comes in a half-dozen variations. The distinguishing characteristic shared by all the forms is that extreme loss of muscle tone. Those of you who have not experienced it yet will have a hard time imagining it. The closest thing to it is the way my arms used to feel after a day of working with a chain saw had vibrated my arms to jelly. That is what differentiates it from standard PD. From there the different forms add their own details.

Of the things mentioned, I relate to these:
"...although freezing still comes into play, what we are experiencing is far different. "

"...I am so "relaxed" that I can barely stand or walk."

"...this is what I am like for a good 2 hours. Sinemet does not seem to touch it; ..."

"...at the peak of these episodes, I weirdly have a sudden, urgent need to (sorry about this TMI) void the bladder, etc. That seems to be the turning point, if I a take a second dose of Sinemet, my body will slowly start to respond. Quite honestly, it 's like Frankenstein's monster on the table as he begins to sense he has limbs. """

"...I sense a profound absence of all muscle tone or contraction-..."

"...meds do no touch it. I sometimes have had to add in a 1/2 tablet of 25 m benadryl, but I noticed more it is a matter of timing. Just lying there doesn't seem to help me. I have to get up and gently stretch plus try to walk around as best I can. Eventually, it feels like my muscles wake up, rub their eyes, and all of sudden I am totally back to normal. Sometimes, it seems like my lower limbs and upper limbs compete to see who gets to relax longer. Others, I get to point where muscles start to come to life and then I sink back. It is all so disturbing and bizarre..."

All of that could have been written by me. There are a few others who have this experience. Bandido 1 has hinted that he does. Tom Isaacs, whom some of you know as the head of England's Cure Parkinson's Trust and I talked yesterday and confirmed that he has it. I have had it for at least five years and maybe ten. Laura indicated that she has had it for two months. Now we know that it can develop where it did not exist before.

I trace my recent worsening of it directly to the wall of stress that fell on me over the last six months. Twice I have found myself lying in the floor unable to so much as raise an arm and once I found myself in a chair and just as weak.

At least I was until my wife brought me two potassium tablets that had me back on my feet in minutes and this mystery first began to yield up some clues for me.

This is going to take some typing so, rather than chance losing it at a critical point I am going to post it "periodically".