Brianof4
New member
- Joined
- Aug 27, 2020
- Messages
- 4
- Reason
- CALS
- Diagnosis
- 03/2020
- Country
- US
- State
- MN
My wife was diagnosed in March of 2020, since then it's been a quick and steady progression of loss of function. She was unable to use legs by September, arms by November and went on a Bipap full time in late March. It's gone by so quick trying to figure out how to adapt to so many situations and balance taking care of our 4 small boys. Somehow even through the year seems to be gone quickly, each night stretches into forever as I switch between cough machine/suction/mask until 5 in the morning.
She hasn't eaten more than a couple hundred calories per day of liquid diet since late April. She claims that it's not because she's having trouble swallowing, but denial has been in the mix since this started. It's always been something else besides ALS and various snake-oil naturopaths have been all too quick to confirm that (for a nice hefty fee of course, and some supplements that they are all to happy to sell). PEG was never an option, because that would have been admitting what was wrong. Now it's too late for that.
I wonder if perhaps this is the best course for her, as apposed to losing her lung function. She is unable to tolerate any painkillers, every one of them that hospice has tried has made her violently ill. Starving might be a much better fate than going further without a way to suppress the air hunger.
Has anyone seen someone go down this path? Most of what I've read has to do with losing the ability to breathe, not this. I'm wondering what to expect. She's already lost so much weight I'm not sure how much longer her body can keep functioning.
She hasn't eaten more than a couple hundred calories per day of liquid diet since late April. She claims that it's not because she's having trouble swallowing, but denial has been in the mix since this started. It's always been something else besides ALS and various snake-oil naturopaths have been all too quick to confirm that (for a nice hefty fee of course, and some supplements that they are all to happy to sell). PEG was never an option, because that would have been admitting what was wrong. Now it's too late for that.
I wonder if perhaps this is the best course for her, as apposed to losing her lung function. She is unable to tolerate any painkillers, every one of them that hospice has tried has made her violently ill. Starving might be a much better fate than going further without a way to suppress the air hunger.
Has anyone seen someone go down this path? Most of what I've read has to do with losing the ability to breathe, not this. I'm wondering what to expect. She's already lost so much weight I'm not sure how much longer her body can keep functioning.