andrewf
Active member
- Joined
- Nov 18, 2021
- Messages
- 44
- Reason
- Lost a loved one
- Diagnosis
- 07/2022
- Country
- US
- State
- MD
- City
- Rockville
My father in law (FIL) has had ALS for 3 years, started very very slowing 2020, and was not diagnosed until 2022 in June. COVID, foot surgery, and other things intervening in the process.
Walked until March of 2023 and finally said “done, can’t do it anymore.” He made a real effort to keep it up until he could not. Now, in past 3 months, he is really rapidly declining. His core is losing strength, breath becoming harder, and voice weaker. He says he notices every day. But his arms continue to work fine. Swallowing, etc. is fine.
His worst symptom, he says, is his gastrointestinal system. Constant bloated feeling, and misery-inducing. I have been getting him some consultation with a gastroenterologist but they don’t seem to be pushing a trial-and-error process he needs to find a med to help him. I mean, he has nothing to lose. I got him a state-issued medical cannabis card last week and some products to try (tablets, food item, drops) but not sure if they are helping either. Anyone have any ideas for GI problems? Miralax and gas-x do basically nothing to ease his discomfort. Maybe a low dose opiod to slow down the digestive system?
He has a care aid 12 hours daily; not all caretakers are equally good unfortunately. I really think he may just stop breathing in his sleep and die one night before his arms even stop working or his swallowing fails him. His words …. “I can live with that.” He said he prays every night that he won’t wake up the next day. Sad words to hear but I get the logic 100% and can’t fault him.
My mind ruminates on these things sometimes. I think about how bad it is, then I watch a youtube video about the Battle of Antietam or the The Somme (WW1) and the utter violent horror of those situations. I mean, ALS is better than being there. I guess. Unless you got a quick head shot wound in battle and instantly gone.
I just want to help his time be less miserable. Anain, if anyone has experience relieving gastrointestinal comorbidity symptoms please let me know!
Walked until March of 2023 and finally said “done, can’t do it anymore.” He made a real effort to keep it up until he could not. Now, in past 3 months, he is really rapidly declining. His core is losing strength, breath becoming harder, and voice weaker. He says he notices every day. But his arms continue to work fine. Swallowing, etc. is fine.
His worst symptom, he says, is his gastrointestinal system. Constant bloated feeling, and misery-inducing. I have been getting him some consultation with a gastroenterologist but they don’t seem to be pushing a trial-and-error process he needs to find a med to help him. I mean, he has nothing to lose. I got him a state-issued medical cannabis card last week and some products to try (tablets, food item, drops) but not sure if they are helping either. Anyone have any ideas for GI problems? Miralax and gas-x do basically nothing to ease his discomfort. Maybe a low dose opiod to slow down the digestive system?
He has a care aid 12 hours daily; not all caretakers are equally good unfortunately. I really think he may just stop breathing in his sleep and die one night before his arms even stop working or his swallowing fails him. His words …. “I can live with that.” He said he prays every night that he won’t wake up the next day. Sad words to hear but I get the logic 100% and can’t fault him.
My mind ruminates on these things sometimes. I think about how bad it is, then I watch a youtube video about the Battle of Antietam or the The Somme (WW1) and the utter violent horror of those situations. I mean, ALS is better than being there. I guess. Unless you got a quick head shot wound in battle and instantly gone.
I just want to help his time be less miserable. Anain, if anyone has experience relieving gastrointestinal comorbidity symptoms please let me know!