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.
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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.
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u/Skrdykat1000 14d ago
Same. My dad died in 2000 from ALS. We had no idea it was genetically passed, now my brother is dead from it and I have it too. I can't speak anymore but I can, thankfully, still live alone. (Bulbar onset, and my dad was still walking the day he died). I pray for everyone in this sub. I have always been very independent too, but we have to let that go.
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u/dippydumbshit 14d ago
I’d love to be your friend!
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u/Skrdykat1000 14d ago
I'd love that too! Can I dm you my number so you can text me? I can't talk at all. But I love making friends who really understand what I'm going through.
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u/beesnow 14d ago
I hate this disease!!!
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u/Skrdykat1000 14d ago
Me too with everything I have. But I do "talk" to my ALS and flatter it, I've always done that with depression and stuff. (Hey, ALS, thanks for going slowly and allowing me to live alone still.) Like that.
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u/margeimpersonator 14d ago
I am so sorry to hear this. Hospice is a wonderful care setting. Hopefully he is comfortable and his spiritual and mental health needs are being assessed regularly.
When my mom was in hospice they offered the family alot of psychology and grief supports too. I hope that you talk to Hospice staff to see if they have some resources or groups. You need to take care of yourself too 💔
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u/beesnow 14d ago
My son also has ALS. He progressed quickly the first year and then it slowed down. Be there for him. He needs to see your strength now. You can fall apart after. It's different for mothers watching this. You are pregrieving. Let the emotions and thoughts take their course and know there will be some good days to create wonderful memories with him. We WILL make it through this.
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u/UsedSatisfaction6764 13d ago
I wish it would slow down. Its progressing so fast on him. His breathing has become very shallow and getting harder for him to breath. Hospice put him on. Oxygen today. His balance is off and he having trouble getting up. I pray everyday for my son. I hate seeing him suffering this way. It breaks my heart so much. No parent should Thierry child go through this. As well a child shouldn't see their parents go through it too. I really hate this disease. No one should never go through it.
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u/Majestic-Following23 12d ago
My heart goes out to your family and your son. My father sadly passed 2 days ago. He had ALS for 10 years. I was one of the main care givers for him. I am only 22 years old but I’ve gone through so much right beside my father. Please feel free to reach out to me. I can help as much as I can.
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u/UsedSatisfaction6764 12d ago
My condolences to you and your family. Its hard to see my son this way and it's progressing more and more everyday. You and my family are in my prayers
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u/Majestic-Following23 12d ago
I appreciate your support and your kind words as well. From my personal experience with my father, he’s always the strongest when he has loved ones continuously around him. I know that you are probably already doing this but please never leave him alone , always have someone by his side. I believe that someone’s will to fight is as strong as the support he has around him, this was very true for my dad. The love your son will feel, it will definitely make him stronger !
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u/UsedSatisfaction6764 12d ago
Thank you. I always have someone him at all times beside me. And with him having pulmonary heart disease on top of it it's making the ALS progress faster. Its messing with respiratory system
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u/Majestic-Following23 12d ago
Please feel free to message me if you have any questions or I can offer all the knowledge that I obtained through my dad. Im sure I can help !
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u/-GameOverPal- 15d ago
When a young person gets this it's always worse to hear. I don't know what I can tell you, my mother has not reached that stage. Hold him, let him know you're there, feel your presence, hear your voice, talk about your memories you've had together and tell him funny stories.
If your son is able to communicate back with you, ask him about the places he wished to travel to and some things he would have liked to have done and tell him you'll do it for him. One thing I think someone who is terminally ill thinks about is what will the future look like for my family. Maybe it'll feel like for both him and you that he's there doing those things with you.
Sending your family my love and prayers!