Jana,

according to your definition, I have had numerous crisises, and even presented my work at a conference during one!!!

that is exactly why I think the word "crisis" is totally outdated. ( I know some would want to kill me for saying that, but I have always said what I think and not what I think people want to hear).

I most likely don't pace myself as well as you do. not that I don't theoreticallhy know how, but as I have said to my neuro recently- if you want to lead a productive life, you can't avoid over-exerting yourself from time to time. I am like a diabetic who is addicted to chocolate cakes. I am asked to present my work in a meeting. I know that this may mean being bed-ridden, connected to my respirator for a few days (although, there is a possiblity that I will able to "get away with it"), and what do I do? go there.

I work two days a week and recover for two days after each work day.
my neuro thinks I shouldn't be working at all like that. I think differently.

I will only stop working, if I think that my patients are getting less then optimal care because of my dissabilities. so far, that has not happened yet. not that I can do everything for them, but I make sure that someone else will.


and Nicky,

I am not surprised at all by your numbers. if I had to guess, from the info. you gave in your posts, I would think that you mostly have airway problems, and much less respiratory muscle weakness. ( the opposite of me).

in order for air to go into your lungs, you not only have to generate a negative pressure in your chest (that being done by your respiratory muscles ), but also have an open path for the air to go from your throat to your lungs. the muscles in your throat/larynx are resposible to keep your airway open, close it when you swallow (so food doesn't go the wrong way) and produce the right tone to your voice. (this is quite complicated, and I don't see myself as an expert in that, so I am just able to explain it sort of superficially).

so it seems that although you have a reasonable strength of your respiratory muscles, the muscles of your larynx and palate are so weak that you have breathing difficulties because of that. that is probably also why you have such a big difference in your vital capacity if you close your nose or not. whereas for me it is only a minor difference.

once you have significant weakness of both your airway protecting muscles and your respiratory muscles you get in trouble.

most neurologists think that you can't have a difference in the weakness of various muscles, but they are wrong.

alice