SLAUGHTER1555
Distinguished member
- Joined
- Jul 12, 2015
- Messages
- 107
- Reason
- CALS
- Diagnosis
- 05/2015
- Country
- US
- State
- Oh
- City
- cincinnati
Hi Cals and Pals its been a while and since the diagnosis last year things have been horrible one thing after the other.
So during all this i have hurt myself mainly my back to the point i could no longer care for my Pals i had to place him in a care facility. This has been one of the hardest things i have ever had to do.
The adjustment to the facility has been hard! We are a young married couple and this has been brutal! My pals has stop using his bipap dont know why but lately he has been having trouble breathing at bedtime if he slides down in the hospital bed slightly. Every night they check his oxygen levels in his blood and it is 100.
Can you have good oxygen levels in your blood and still have breathing problems with ALS? I think not using his bipap is playing a part in his difficulty breathing. Last PFT we had done was like 43% not sure what it is now.
All this is so new for us still not sure what to expect with each change in ALS any information would be great.
He is in a good care facility that specialize in neurological disease. ALS is new to their facilitu my pals is the 4th one there. They mainly have MS and ppl who have had strokes. Each resident has their own room that they can paint and make their own. Lots of activites OT and PT. 3 times a week the place is beautiful you wouldn't even know it was a care facility. But it still hard to leave him there.
Well that's where we are now.
So during all this i have hurt myself mainly my back to the point i could no longer care for my Pals i had to place him in a care facility. This has been one of the hardest things i have ever had to do.
The adjustment to the facility has been hard! We are a young married couple and this has been brutal! My pals has stop using his bipap dont know why but lately he has been having trouble breathing at bedtime if he slides down in the hospital bed slightly. Every night they check his oxygen levels in his blood and it is 100.
Can you have good oxygen levels in your blood and still have breathing problems with ALS? I think not using his bipap is playing a part in his difficulty breathing. Last PFT we had done was like 43% not sure what it is now.
All this is so new for us still not sure what to expect with each change in ALS any information would be great.
He is in a good care facility that specialize in neurological disease. ALS is new to their facilitu my pals is the 4th one there. They mainly have MS and ppl who have had strokes. Each resident has their own room that they can paint and make their own. Lots of activites OT and PT. 3 times a week the place is beautiful you wouldn't even know it was a care facility. But it still hard to leave him there.
Well that's where we are now.