Sometimes trying to make sense of all I have learned about PD over the last ten years makes me feel like a beagle at a rabbit convention. It is hard to stay focused. Yes, once again I have been chasing a rabbitt. Maybe an important one.

NeuroTalk is unique in many ways. One is that there are a few old warriors here. The other forums are filed with Newbies asking things like "Does Mirapex have side effects?" But here are some of us dealing with advanced PD, whatever that is. As a result the picture from here is a little more complete than anywhere else. So I'm going to ramble on here a bit and describe what I think I see and ask if it sounds right to the rest of you.

I see a disorder that is first noticed in midlife as a collection of problems with control of the conscious functions of our muscles. Gradually it draws in the unconcious functions as well. Then it creates problems with our inner being, our ability to cope.

This latter is the rabbit of the day. The feeling that we could handle the world much better if only we had someone to hold us like a child has been expressed more than once. And a sense of extreme fragility seems common as well. As we advance we have increasing difficulty maintaining balance or homeostasis as it is called. This is endocrine territory and the land of the adrenal.

These feelings are no illusion. Many of us are ready to fall apart at a moment's notice. I began this iine of thought lying helpless on the floor from stress overload a couple of months ago. I was too weak to raise an arm. It was not the rigidity of the muscles. Quite the opposite. They had no tone at all. After an hour or so the extra meds my wife had brought began to work, or so I assumed. Now I am not so sure. Another time in the same period, I was unable to get out of my chair. Again an incredible weakness came over me. That time I was rescued in minutes by a potassium supplement. I have not been able to reproduce that miracle although there have been hints. And still another incident in the same period began with a 2:00 AM wakening to a warning of a tornado in the area. I heroically roused my wife and was mobile, then suddenly I was on the floor, helpless. Forget the idea that I would rally to the adrenaline. Luckily it was a false alarm.

I did not used to be this way. I have acquired this at some point in the last ten years. Actually, I think that it was what sent me to another neuro in 2000 after a dx of essential tremor in 1993. My lower legs began to give me trouble at times. Requip and sinemet seemed to fix it for four or five years, but then I began to have spells which seemed to be triggered by MSG. Like the more recent attacks, complete loss of muscle tone.

So what IS going on and is it just me? Or is it part of the mix as time goes by? An extreme fragility. I remember discussions about blood sugar and its importance. Rosebud, in particular, had studied it. (Rosebud, ifyou still lurk, PM me.) I found that mine had a weird little drop that coincided with going off. Or so I thought. Again I am not so sure.

There are more links in this chain, but it is late. So let me cut to the chase on this rabbit. I have been learning about a family of inheritable disorders called "Periodic Paralysis". There are a half-dozen or so, none of which fit my profile. At least that is true of the known ones. The first was discovered in 1984 so there is frontier here.

These PP are essentially a hypersensitivity to change, particularly of blood sugar and particularly of minute changes. They speak of "attacks" as the body overreacts to "triggers" and moves electrolytes out of the bloodstream and stores them in the muscles similar to the way it stores glucose. This disrupts the electrical charges within the cells which go limp until things dribble out and balance is returned.

The most common triggers are interesting. A high carb meal. Stress. Adrenaline. I would add the wearing off of sinemet. And I wonder too, cannot a move of these ions trigger a rigid muscle response as well?

I suspect that those latter stage problems of fragility may be just that - fragility.

Here is a link to a very readable piece by a doctor at Mt. Sinai who has one of these himself. Well worth a read.
http://www.translational-medicine.com/content/6/1/18