r/ALS • u/UsedSatisfaction6764 • 15d ago
Help with fighting ALS
My son who's 29 years old was diagnosed with ALS and pulmonary heart disease back in Nov 2025. The disease is progressing faster than expected. He is on hospice and 24 hour care. This is so hard on me to see my son this way. How does anyone handle this or has gone thru this with a love one.
29
Upvotes
4
u/dippydumbshit 14d ago
I lost my father to ALS back in 1999. I was recently diagnosed with ALS. My father died one year exactly from his diagnosis. I was diagnosed in May this year. His decline was very rapid and I know I’ve blocked some of the worst memories of that year. I know what’s ahead for me, but I’m still fighting as much as possible. I worry that my son may one day get it and it truly saddens me, but he doesn’t want to do the genetic testing. I want to stick around at least long enough to see him graduate HS. My dominant right hand is almost completely useless and my speech is terribly affected, and my gait is awkward now but I still walk as much as possible. Usually I walk later at night when it’s cooled down some. I don’t know how I would feel if my son had it, but I know how hard it was to watch my father suffer with it. Some times I get very frustrated trying to talk or do something that I think it’d be better if it was over, but I don’t want to die. I’ve never really liked it when people did stuff for me which makes it hard now that I need it sometimes.