Terminal Diagnoses / ALS
Hello, everyone! I was diagnosed in April with ALS - Lou Gehrig'sDisease. I'm very young to have it, and it's been....interesting to say the least, learning how to cope.
I'd like to create a safe space for this subject - both for anyone else who might be struggling with a terminal disease, but just as importantly, a place for people to ask questions. When I was first diagnosed, I held a QA session on Reddit for people to ask me anything about ALS, and it was an amazing experience. It was enlightening to see the sort of questions people are curious about, it was wonderful to be able to dispel some misinformation, it was amazing to educate people on a rare subject. And it was humbling, too, to have questions asked that I'd honestly never thought about. It was a great dialog and I'd like to be able to have that here, too.
If you're burdened with knowing your time span, or if you want to know anything about it, let's have that discussion.
Thank youso much for sharing your story and creating this thread! I admire you for being comfortable enough to talk about your diagnosis so openly, and perhaps help others in the process <3
So little is known, and much less is SAID, about death and dying. It's a core, vital part of what it is to be human, and we should be open to that dialog. There's no shame, no dumb questions, it's in our nature to be afraid of death but we don't have to be.
@LunisticeThat's true. I think some people deal with death better than others, though. It might be a life long process to make peace with one own's mortality.
it definitely IS an ongoing process. Even KNOWING you're going to die, and how, doesn't give you much of an edge. Most days I'm okay with it, some days I'm not. It's a continuing lesson, and a very revealing test of your inner strength and the strength of the bonds you have with other people.
I found out I have chronic myelomonocyticleukemia about three months ago. It is typically seen in males over 60 and I am only in my twenties and female. They can't tell me how long or how it will progress or what will happen when because there aren't many as young as me. I feel like sometimes having answers would make the process easier but who knows since I can't get those answers. I know it's almost always a death sentence for elderly people. I'm scared and confused and irritated. I don't know if you can relate at all. I just thought I would share.
I'm so, so sorry to hear that. It's hard to be a medical outlier; none of the doctors quite know what to do with you, they don't have a roadmap and you have to discover everything together. That's really rough.
I can totally relate. I'm also very young to have my disease, and my decline is really slow. ALS is different for everyone except for the end of the story. I agree that it's incredibly frustrating to not have any solid clue what to expect! I'm a planner by nature, and not knowing the exact rate of decline, not knowing what's going to go next - my hands? My breathing? My speech? - makes it really hard to figure out what to do from here. When I first started exhibiting symptoms, I just wanted to know WHAT was happening so that I could prepare and plan. And even now that I know. I still can't really plan. I'm supposed to go on vacation next year with my best friend, and I honestly don't know if I'll still be walking then.
It's incredibly frustrating. I'm so sorry you're experiencing this, too. If you ever ever need to talk about it, PM me please, if you don't feel like talking about it here. I've found, personally, that talking out loud about my fears and frustrations helps me work through it all. I wish I could tell you it's going to be okay, but we both know it won't. I'm so sorry this is happening.
@Lunistice I was diagnosed with bulbar ALS in May 2024. I live in Texas, and I’m 68 years old. I take Nudexta medication to help with the emotional outbursts of laughing and crying. The weakness, slurred speech, and muscle loss progressed quickly. Mobility has been an issue since Dec 26, when I fell and broke my hip, and although I made small strides at first, I felt like my life had been placed on a countdown, as there was no known cure other than the prescription of riluzole medications, vitamins, and therapies. As the disease progressed, my symptoms worsened. With my neurologist's guidance we decided to try other approaches and started the ALS/MND treatment, and it changed everything. Within 5 months, I noticed more strength in my limbs, clearer speech, and I have stopped using feeding tubes. I’m starting to learn how to walk again & I now sleep better. This ALS/MND treatment program gave me back control and hope.