I admire your attitude and positivity. And I hope you remain healthy for many years to come.
With regards to your improvement all I can suggest is that you have perhaps been misdiagnosed. I have seen similar posts over the past five years, and what usually happens is that the person who is claiming to be improving eventually accepts that they are not (because they have been deluding themselves - and I am not suggesting this is the case with you), and they die. Or it turns out they have been misdiagnosed. Or that they have a form of ALS such as PLS that may never, or very late in the disease progression, affect their breathing and functionality significantly.
There is absolutely no way that somebody like my partner, with extremely low FVC and on Bipap over 20 hrs per day, could come off Bipap without going into respiratory failure.
All the best, Dani
