Unsteadyandready

Unsteadyandready Hey Erin here Diagnosed with ALS at 23
(17)

03/15/2026

Austrian parliament and the UN will never be the same again. Lol. A memory from 2025

Hawaii treated me very gently when I was there. I’d love to go back someday
03/13/2026

Hawaii treated me very gently when I was there. I’d love to go back someday

03/13/2026

Sometimes things are so ridiculous you just gotta laugh. And then the leg erecti*n happens… 🙄

At Yesterdays PT appt

Mila understands the assignment.
03/10/2026

Mila understands the assignment.

03/10/2026

When I was diagnosed with ALS, my voice was already changing.

Now I use an AI-cloned voice so people can understand me better.
And honestly… I’m grateful for it. It sounds really close to what I used to sound like.

But losing easy communication has been the hardest part of ALS for me so far.

If that’s part of your story too, I see you.
You’re not alone in this.

I joke a lot online… but it’s hard over here too.

Hockey fights ALS! not only did we see the game but the gave Jess and I custom jerseys. We got to pick the number. Je...
03/09/2026

Hockey fights ALS!
not only did we see the game but the gave Jess and I custom jerseys. We got to pick the number. Jess for the win 😝

The best part was the meet and greet after 🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥

Thank you to who set this whole thing up and escorted us the whole night. It was a blast!! Please check them out, they travel around the country giving people with ALS an amazing experience

03/06/2026

I swear getting ALS at 23 hasn’t made me bitter (or has it?)

Speaking voice compliments of ALS! Not just everyone loses their voice, but I am. If you have ALS and can still talk, just know I’m jealous of you 💚

I’m still looking for the closed caption generator that actually detects my speech. What do you think I said?

I don’t like seeing how much weight I’ve lost from having ALS. I used to be thick and I loved it.
03/03/2026

I don’t like seeing how much weight I’ve lost from having ALS. I used to be thick and I loved it.

Yesterday morning my mom stubbed her toe trying to get to me. I didn’t mean to laugh but it’s always kind of funny when...
03/03/2026

Yesterday morning my mom stubbed her toe trying to get to me. I didn’t mean to laugh but it’s always kind of funny when that happens! (🤬mom… 🤭me)

I know what’s coming. Eventually I’ll have to move into the living room. Where there is more room. That moment comes when I start needing a hoyer lift.

Everyone talks about how expensive ALS is, how hard it is, but no one talks about how much EXTRA SPACE you will need.

It’s crazy how many items you will need at any given time. I just never imagined it when I was given my diagnosis.

FYI I freaking love my room, I’m not going quietly.

03/02/2026

Most people my age are worried about figuring out their career.
I’m fighting for my life and choosing to do it out loud.
ALS doesn’t care how old you are. It doesn’t care about your plans. But it didn’t count on one thing:
I’m still here. And I have something to say.
This page is my journey, the hard days, the wins, the truth about living with ALS at 26.
If you’ve ever felt like life handed you something impossible💩. Follow along. This one’s for you too.
❤️ Like this if you believe in fighting back.
💬 Comment “HERE” so I know you’re with me.
🔁 Share this I think someone needs to see it today.

Btw I’m Erin and my dog is Mila

03/01/2026

I got unstuck today.

It’s so silly, I usually have to sit there and wait and plead with my eyes for someone to turn my powerchair on…helloooo mom

Now I do it with my knee 😊. Yesss!!!

The ugly ⬇️
It took over 4 months going through the regular channels, because no one has gotten a clue yet that ALS patients don’t have 4 months to wait.

Another lesson learned because guess what…

Buy a sensitive switch, plug it in to a 3.5mm port (mine is located under my joystick) and velcro it where it makes sense. That’s all it was. This is what took 4 months to wait for? Ridiculous

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