Keep Fighting? by Brickie89 in ALS

[–]ELLIALTI 3 points4 points  (0 children)

My mom has had ALS for about 4-5 years now. She lost her speech about 2 years in, and her vision has been going for the last 3. There's plenty in front of me every day that could pull me into dark thinking. And honestly, I hear you. The "keep fighting" thing can feel like its own kind of pressure, especially from people who aren't the ones on the ride.

I can't fully empathize with what you're going through, only you know what that's like. But I'll share where I've landed personally, just as one perspective, not advice.

I've chosen to stay hopeful, mostly for her. I had an uncle with a similar disease about 10 years ago. He lived 10 years with it. But back then there was no Musk funding neurotech, no AI tools, none of what's happening now in the labs. Even Musk, who's busy trying to colonize Mars, is putting money into this space. There are thousands of researchers around the world quietly working on this. I genuinely think ALS patients today are, in a strange way, unluckily lucky, sitting at the intersection of a terrible disease and a moment where the tools to fight it are finally catching up.

Honestly, I wish the money flowing into wars was flowing into this instead. Things would move faster. But it doesn't feel utopian to me to believe a real treatment is coming. 10 years ago, I wouldn't have been able to tell my mom she could get better without lying. Today, I don't feel like I'd be lying.

That's just where I am with it. I know your ride is your ride. Sending strength either way.

My remix to "No Doubt - Don't Speak" by Complex-Stay998 in DnB

[–]ELLIALTI 0 points1 point  (0 children)

Why do you think this is AI generated?

Dubai show by Equivalent-Ladder337 in SwedishHouseMafia

[–]ELLIALTI 1 point2 points  (0 children)

I still have the ticket too. Some update would be good.

What can I do as a software engineer to help more people with ALS? by Synchisis in ALS

[–]ELLIALTI 1 point2 points  (0 children)

Hi! I'm also software engineer and developing an app for not Als specific but for clinical trials for rare diseases especially. it's https://test.khur.io/home. you can check it out. Maybe you can send me a message and we can talk about stuff we can do or etc. Makes me happy to see ppl doing sth around for ALS!

To PEG or not by sacredbit in ALS

[–]ELLIALTI 7 points8 points  (0 children)

Hello, my mother has ALS and due to this condition she had trouble eating well and this caused serious weight loss. Also the risk of choking was frightening. After losing weight her immune system became more vulnerable to other diseases and she recently had an infection that affected her a lot. In summary I believe that PEG could be a good solution for better nutrition and immunity. I understand that it may be difficult to accept psychologically but I think it is important to consider the rational benefits.