Dear Kim,

The fact that your husband is aware of this fine line and wants help in finding it, means that he already understands this illness more than many spouses and care-givers. As well as quite a few neurologists.

The truth is, (at least in my opinion), that because of the very unpredictable nature of this illness, you are constantly going to err to one side or the other. Learning to live with this (eg-knowing that sometimes you could have done more, and vice versa) is part of learning to live with this illness.

Recently, after some changes we made in my treatment regimen, I had noticeable improvement. This lasted for a few weeks after which I crashed.
I asked my neurologist if he thought this was the "normal" fluctuations of my illness or the result of me doing too much, when I felt better.

He honestly answered that it could be both, and he doesn't know. I then asked him if he thinks I should just slow down even when I feel I can do more. His answer to this was-No. I think you should do what ever you feel you can, when you can.

As opposed to those that took care of me before, he is there to share my victory when I am doing better, but also there to share my frustration when I crash. He hopes, like I do, that with time there will be more victories and less frustration. But, there are no short cuts.

I am not aware of any blog written by a spouse of an MG patient. Maybe your husband should start writing one?