Grumpy'sWife
Distinguished member
- Joined
- Aug 18, 2014
- Messages
- 153
- Reason
- Lost a loved one
- Diagnosis
- 07/2014
- Country
- US
- State
- Ohio
- City
- Southern
Grumpy has been in the hospital for the last 6 days. Transferred us from the VA at homes to here in Cleveland. They seem very knowledgeable about ALS and have 3 other ALS patients here now as well. I haven't gotten much sleep as he isn't sleeping well and prefers me to the aides doing his care. He has a bipap now and getting used to it has been a very trying time. His peg tube goes in day after tomorrow because his FVC was extremely low. They said now or probably not at all.
How the hell do we get off this train? It feels like we are going to run out of track soon. We went from being so.positive, doing well with transfers and breathing was ok to this. He can't stand any longer, can't move his toes and his FVC is a 27. I hate this damn disease!
Thank you for letting me vent, even at 3:30 in the morning...
How the hell do we get off this train? It feels like we are going to run out of track soon. We went from being so.positive, doing well with transfers and breathing was ok to this. He can't stand any longer, can't move his toes and his FVC is a 27. I hate this damn disease!
Thank you for letting me vent, even at 3:30 in the morning...