Unsteadyandready

Unsteadyandready Hey Erin here Diagnosed with ALS at 23
(32)

06/16/2026

What does ALS feel like?

06/13/2026

I promised her I would practice. I didn’t say how.

Got another ALS FRS assessment and another point slips away. 😕I’m not sure if it’s emotional weight of hearing the new n...
06/10/2026

Got another ALS FRS assessment and another point slips away. 😕

I’m not sure if it’s emotional weight of hearing the new number that exhausts me today. But I’m beat. I fight this beast every day but today I think ALS won a little.

An ALS FRS is a subjective questionnaire that rates where you are in the disease based on how much daily function you have left. It’s kind of silly and seems outdated but it is what it is and it’s what everyone seems to gauge you by.

The scale starts at 48 and ends at uh oh. Let’s put it this way, I’m more than halfway to uh oh.

There it is, proof I was on the Jumbotron at Dodger Stadium. I never saw it because I was staring straight at the camera...
06/09/2026

There it is, proof I was on the Jumbotron at Dodger Stadium. I never saw it because I was staring straight at the camera.

My heart was racing! What an absolute honor it was to be on the field representing people with ALS for Lou Gehrig’s day....
06/08/2026

My heart was racing! What an absolute honor it was to be on the field representing people with ALS for Lou Gehrig’s day. It was a total surprise for me, completely unexpected.

Thank you to and and everyone on her team who worked really hard behind the scenes to make it happen!

and shoutout to for the bio announcement and actually mentioning that ALS doesn’t have an age requirement

06/07/2026

This is exactly why friends matter 🫶🏼

06/06/2026

Finding accessible trails. They didn’t mention a side show!

Yes the guys with the long beards are my uncles! (and not in a rock band) Yesterday’s event was a success! Middle of th...
06/03/2026

Yes the guys with the long beards are my uncles! (and not in a rock band)

Yesterday’s event was a success! Middle of the day but everyone took the afternoon off work for the great cause of raising awareness and critical funds for ALS. 50k raised

work tirelessly all year fundraising for research! Augie was such a powerhouse and his wife Lynn carries on his legacy.

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