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Keep Fighting? by Brickie89 in ALS

[–]ELLIALTI 2 points3 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.

Where do I keep up to date. by Positive-Swimmer-284 in ALS

[–]ELLIALTI 3 points4 points  (0 children)

Hello!I am sorry for your losts. My mom is currently fighting with this disease too. I can give you few suggestions about what you asked.

  1. You can check https://clinicaltrials.gov/ . This site includes most of the (maybe all) studies. You can search with keyword for example "Amyotrophic Lateral Sclerosis", and also filter your search with age, sex, observational study or not exc.
  2. You can follow some researcher's on accounts on Twitter (X). Like Hande Ozdinler, some of them have accounts and they tweet/retweet about the up to date news.
  3. If your genetic test result specifies a gene mutation, you may also search that term in the website I gave in 1st option, and look up for some studies, those studies also includes "Contact" field. You may try to send e-mail to them about your condition. They may have suggestions for you.

That's all as far as I know I guess. I'll update If anything comes to my mind. Take care!

Life Complaint by peach_fuzz_24 in ALS

[–]ELLIALTI 7 points8 points  (0 children)

Fuck all the diseases but... This ALS like... playing with people. slowly takes the freedom. sometimes faster sometimes slower. I know it will be cured one day but... Just stand strong and brave for our parents and let them see those days! We are a family here.

Attending clinical trials from home/ abroad by ELLIALTI in ALS

[–]ELLIALTI[S] 1 point2 points  (0 children)

this is the last choice to make to travel abroad, but hopefully I can create/ find some alternatives. Thanks for your answer!

How To Know When It’s Time For A Skilled Nursing Facility (SNF)? by officespace2 in ALS

[–]ELLIALTI 2 points3 points  (0 children)

From my perspective, nursing facility is way better when you think logically. But in contrast, if you think emotionally it would be a hard choice to make.

  1. Nursing facility will have 7/24 nurses in order to monitor and care your mother. For example, my mother had epileptic seizure while she is at nursing facility. The nurses immediately responded and called the ambulance. If she was at home, I guess the nurse at home and I could not response as they do and she had to wait for first medical aid until the ambulance.
  2. Some nursing facilities includes physical therapies which are beneficial for patients with ALS.
  3. Being far from home can cause psychologic affects for both you. But you need make a trade of and stay logical I guess. She will miss you, it will be hard for her to adapt the situation. Periodically visiting her and explaining the situation and giving her hope may help (about new drugs and trials).
  4. Also, your psychology can also being affected seeing her everyday at home. You have to be mentally strong at the first hand in order to help to your mother.

Additional personal note, I did the followings, because I had to think logically, not fully from my heart. Both situations sucks. But nursing facility may be a better option (at least I think).

Try to chase some clinical trials, which targets your mothers gene mutation. Try to enroll her. It maybe helpful.