jrtriggs
Member
- Joined
- Apr 27, 2015
- Messages
- 15
- Reason
- PALS
- Diagnosis
- 09/2014
- Country
- US
- State
- Pa
- City
- Wexford
I have bulbar and was diagnosed 18 months ago at 60. I have no trouble walking or using my arms and have limited use of my hands, but they are still somewhat functional. I can't speak or eat and use a peg. I have been using the trilogy unit at night, but it seems my lungs have recently deteriorated to the point that I need to use my bipap unit during the day. Struggling to breath during the day creates an uncomfortable level of anxiety that I don't know how to fight. It appears I have a few choices, continue to use the bipap during the day or increase my dose of Lorazepam (Ativan) to alleviate the breathing anxiety. I have opted not to go with a tracheotomy, but it seems I am getting pushed in that direction. My doctor says we should call hospice to get things set up. Since I can still walk that seems premature. I'm lost what to do from here. Day and night with a mask doesn't seem like a good option either. Any suggestions?