Hello Just wanted you to know how encouraged I am that you are here! I have been so lost at times with this nasty beast! Is your husband on a NIV? My husband was referred to hospice in March and I don't think a day has gone by this past year without my crying. I think they were too quick for that and have refused at this point. Lots of ignorance in the Medical community. Does your husband still have some use of legs/hands? My husband uses the NIV most of the day but will not use it overnight. He says he is drowning and feels very claustrophobic. He still writes a little but hands are very weak. He's on a walker but stumbling gait all the time, scary....You gave me hope!! thank you!!