Unsteadyandready

Unsteadyandready Hey Erin here Diagnosed with ALS at 23
(21)

ALS doesn’t damage your lungs. My lungs are fine.It damages the muscles that RUN your lungs. Specifically your diaphragm...
04/12/2026

ALS doesn’t damage your lungs. My lungs are fine.

It damages the muscles that RUN your lungs. Specifically your diaphragm.

I’m not a doctor, I’m a 26 yo with ALS and was given this advice when I was diagnosed. …Practice diaphragmatic breathing and try to strengthen that ability.

Has it worked? Maybe?? I’m not really sure but in a disease where there is no cure, I’ll give it a go.

04/11/2026

Who knew you could get ALS at 22? Not me. I was unbalanced and blaming the wind

I had all the symptoms starting at 22 but went a year blissfully unaware that ALS had already begun shutting me down.

And when I was diagnosed I looked at my mom and said…. what’s ALS? 😳

My mom’s “high tech” invention. These hold toast, popsicles, quesadillas, sandwiches but today.. peeps.
04/11/2026

My mom’s “high tech” invention. These hold toast, popsicles, quesadillas, sandwiches but today.. peeps.

04/09/2026

“Mom....! I need you to just cut it off please”

I’m so weak in my arms now. It’s too hard to wrestle with it.

I have a method to putting on my clothes
AND that bra had to die! It used to be fine in the beginning, but my abilities change constantly.

On a side note, looking at this video I mourn my back muscles,
where are they?!

Hey, I’m Erin and I was diagnosed with ALS at the age of 23. I’m here to let the world know that Amyotrophic Lateral Sclerosis is no joke. What is a joke is that there still isn’t a cure for this fatal disease..

My creative mind doesn’t have ALS, but my body does.
04/08/2026

My creative mind doesn’t have ALS, but my body does.

One of my followers said “we have the same exact room” she was so right. Trippy.
04/08/2026

One of my followers said “we have the same exact room” she was so right. Trippy.

ALS takes things from you in ways you just don’t see coming. One of the first things that happened to me was i would cou...
04/07/2026

ALS takes things from you in ways you just don’t see coming.

One of the first things that happened to me was i would cough if I drank too fast. Due to ALS 😖 part of my throat isn’t keeping up anymore. Drinking through a straw helps slow the liquid down so my throat has time to respond. .

Side note: exotic foo foo cocktails always come with a straw 🍹so this is a plus

But because my swallow is slow, last year I got a feeding tube which helps me stay hydrated and it’s how I take all my pills and supplements. (It was a hard decision but I’m so glad I have it now)

Erin here, still trying to stay in the “I’m still alive” game one coffee drink at a time

Beware, if you see me rolling around towards evening and you think, “bless her heart, how sweet it is that this poor whe...
04/05/2026

Beware, if you see me rolling around towards evening and you think, “bless her heart, how sweet it is that this poor wheelchair girl is out with her mama”

just know I’m coming for your fruit next

I figure if I get caught I look pathetic enough to easily forgive. (Play the ALS card here) or my mom will just take the heat for me.

I ordered a bacon bbq burger and my mom had to cut it in tiny little pieces for me to eat. I could tell she was irritate...
04/03/2026

I ordered a bacon bbq burger and my mom had to cut it in tiny little pieces for me to eat. I could tell she was irritated , but it was delicious 🤤

03/30/2026

ALS is such a beast. Choosing carefully the 20-30 words I say in my entire day now … and the ones I say, you can’t understand.

To be fair my mom understands about 90% (I think it’s her superpower)

Losing my voice is the hardest thing for me to come to terms with so far. I don’t want to let that go, I just don’t. Yes I have a AI voice clone, yes I have an eyegaze. It’s not the same. Nothing feels as sweet as being able to rattle off the thoughts in your head, seamlessly, outloud in real time. Nothing else comes close.

Not even being unable to fix my own straw



Hey Erin here and I got hit with ALS out of the blue. When I was 23 my dad used to ask me why I sounded so tired on the phone. I thought it was because I was in college and well..tired. Turns out it was ALS.

03/28/2026

A follower tried to tell me how to insert a straw into a boba tea. Girl, I’ve got ALS but I’m still the boba queen.

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Brea, CA
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