Bob R
Active member
- Joined
- Jun 24, 2015
- Messages
- 40
- Reason
- PALS
- Diagnosis
- 06/2015
- Country
- US
- State
- FL
- City
- Lake Worth
I have bulbar onset ALS for close to 2 years. I'm pretty much confined to a hospital bed for 22 hours per day. I find myself sleeping 12 - 14 hours per day. When i sleep, I have no problem inhaling but exhaling seems to take twice as long, and seems to be labored, although not consciously so.
And every 30 minutes or so, I have some kind of spasm where I unconsciously take a deep breath and let it out. I have a trilogy machine but I'm good without it, and I find it impossible to use. It doesn't breath at the same pace as I do, so often the machine is inhaling while I am exhaling. My oxygen number today was 95.
Anyone have any comments on all this ? Is this normal ?
And every 30 minutes or so, I have some kind of spasm where I unconsciously take a deep breath and let it out. I have a trilogy machine but I'm good without it, and I find it impossible to use. It doesn't breath at the same pace as I do, so often the machine is inhaling while I am exhaling. My oxygen number today was 95.
Anyone have any comments on all this ? Is this normal ?