Tracy,

You say that you have been seen by a pulmonologist. Try discussing with him the option of non-invasive respiratory support.
To me this has made a life and death difference.
Unfortunately, neurologists (for reasons I can't explain) stay away from even trying to understand respiratory problems.
Once you have your own respirator (and no nurse is deliberately taking it off to measure your non-recordable vital capacity) you have full control of how and when to treat your respiratory difficulties.
Further more it allows you adequate sleep and rest, leading to a significant improvement in your functional ability and quality of life.