Does this make sense?

[starente15]

My father saw a pulmonologist today who told him there are two types of ALS and he has the 'better' one that is only affecting his breathing and no other muscles. I know there are two different onsets and he has bulbar but that would seem to be the worse of the two. He was given hope that he could live many more years. I'm concerned about false hope and quality of life

 

[gooseberry]

Time to find a.pulmonologist who understands als....clinic may be able.to.recommend one. We had difficulty with pulmos because they didnt know what to do for my husband. Put him on bipap and said that is all.we.know to do...should find someone.else!

 

[GregK]

> should find someone.else!

I 2nd that.

wow...

 

[starente15]

I totally agree. We go to the first clinic on Friday thankfully.

 

[gooseberry]

If your experience is like ours, you will find that you educate the medical professionals. Unless they are from clinic or specialize in als, few know how to treat and handle our pals.

 

[affected]

VERY strange thing to say.

The clinic should be able to give you far more reliable information.