Lungs are going down fast. Is here anything that can be done to strengthen the diaphragm or increase lung capacity or slow the loss of capacity/function? I was told not to exercise on a powerlung as that would cause muscles to weaken further.
Try breath stacking. It is not a miracle but it may help slow things a bit. If you have a bipap using it as apprpriate seems to help some stabilize for a while too
If you have a cough assist maching, you can use it in reverse to help expand your lungs. A study was done in which inspiratory training showed positive results. I bought an inspiratory trainer which was the same one they used in the study. There's a lengthy discussion on the trial and how to do it over on ALSTDI forum.
BiPap use as you need it will definitely help, as Nikki has said.