patrick',

sorry to hear about the hard time you are having and I apologize if I have not been sensitive enough in my post.

it is hard to get adjusted to this illness and the way it affects your life. and it really doesn't happen in one day.

there are not many disease that I know that can cause such chaos, like this illness. it is not that you can't know what you will able to do tom. or a week from now. you don't know many times what you will be able to do an hour later. it's a lot like walking in quick sand, when you don't know if the next step will be stable and lead you forward or you will just sink and have to somehow pull yourself out.

the only totally predicatable thing about this illness is how unpredictable it is. that being said, there are people that eventually respond very well to medications, others have to learn to live with this illness, without such a response. and you do learn with time how to walk in this quick sand, how to recognize the areas in which you are more prone to fall, and you also learn how to pull yourself out, after you did sink into it.

just give it time. don't try to find magic cures, but do try what is sensible. learn from the experience of others, but find what works for you.
and also try to get better evaluation and treatment for your respiratory symptoms. ask to be reffered to a pulmonologist, prefarably one with expertise in neuromuscular diseases.


hope you start to do better soon,

alice