Breathing easy

[MG Community Member]

Thanks John for sharing. I was diagnosed last Sept. By November my SVC was 51 and I was prescribed a bipap. I use it at night and a couple of hours in the afternoon. Shortly thereafter I was given a cough assist. My SVC is now in the 70s and my FVC is 100. I can lay flat without a problem. I went from having considerable breathing problems to minimal problems. I think all ALS patients should be prescribed a bipap when diagnosed to simply give your lung muscles a rest. Also the cough assist expands my lungs and clearing out the mucous improves my speech. This should become a standard of care.

Thanks again John.

Tom

[MG Community Member]

I agree with you.

[MG Community Member]

I asked for my bipap after hearing a webinar.  Now I have asked for the cough assist.  Unfortunately I feel like I have to do my research and then ask for everything.  I do feel better after using the bipod at night.  I don’t know yet if my numbers are better.  I agree totally that the respiratory assistance should be ordered as soon as diagnosis is made, especially with bulbar symptoms.

[MG Community Member]

I have been using a cpap/bipap for many years. Recently I had loud leaks that kept me and spouse awake most of the night.  I adjusted the pressure down by 2 levels and now I am sleeping like a baby and no leaks, or noise.  I looked into options and methods on YouTube for adjusting it and it has worked very well.  The pressure was too high for some reason.  I have a Dreamstation.