Nicky,

I totally agree with Annie, that it would be advisable to have a pulmonologist involved in your care, and prefrably one with a good understanding in neuromuscular diseases. as most neurologists don't have a good understanding of respiratory problems, and they can only do a very rough evaluation, which does not always suffice.

further more, you may benefit from nocturnal respiratory support. it may not only improve your breathing ability, but also can effect your swallowing and talking.

as much as it may sound scary at first, to use a respirator, it can significantly improve your quality of life, until your illness is under better control.

it is true that if you have significant weakness of your palate, it can make the VC appear much lower then it really is, but this in itself is a reason for treatment, as it can lead to aspirations.

alice