Unsteadyandready

Unsteadyandready Hey Erin here Diagnosed with ALS at 23
(13)

08/28/2026

What kind of weather situation happened to cancel this flight?? Traveling from CA to Boston for the HerALSStory Annual retreat. All I know was that we were 15 minutes away from boarding and boom cancelled.

Ok.. this isn’t what’s going to destroy me but…,What a pain! Because of my ALS it took a MOUNTAIN of effort from my Mom to get to the airport this AM. Feeling exhausted and defeated because we lost our first nights room deposit in Boston, and now we can’t get another ride to the airport tomorrow at 3am to catch the next flight they booked us on. So my mom will drive the van and park at the airport for a week.

That’s the ugly. Here is the good.

👍🏼 My mom just happened to be talking to the gate agent about my chair when she as notified by text the flight was cancelled. So she was first in line to rebook (and that line was huge)

👍🏼 when we arrived home our friend Denise sent us a DoorDash gift card so we could eat dinner without stress. If you don’t know Denise, her husband Darin Nakakihara was my buddy who passed from ALS this year 💔.

👍🏼my moms beau was able to take us to the airport this am (hour drive) and then luckily come right back for us an hour later to bring us home.

Currently waiting for our lasagne and chocolate cake to be delivered and then it’s lights out because I have to wake up at 2:30am for round 2

✈️

08/25/2026

Also currently in my non-movable period. Very exclusive.

45 books read on my kindle acct so far.

I miss the smell of a book so I have my mom crack open books and waft the old book fragrance towards me from time to time.

A random assortment of my existence. All leading up to the HerALS story retreat coming up next weekend. ❤️   ❤️
08/21/2026

A random assortment of my existence.

All leading up to the HerALS story retreat coming up next weekend. ❤️

❤️

08/19/2026

My other less obvious symptoms of ALS

Exhaustion, weight loss, muscle twitching, coughing when drinking thin liquids, dropping items, the occasional trip.

Oh and every neurologist I’ve seen said my tongue twitches like crazy. (I can’t feel it)

ALS is a neuromuscular disease. Your motor neurons die and then your muscles you need for walking, talking, breathing also die. And btw there is NO CURE and it’s 100% fatal

…tic tic tic ⏰

I’m Erin and I was diagnosed with ALS at 23. I have made it my mission with whatever life I have left to spread the word about ALS and that you can be young and healthy and out of the blue.. s**t starts happening. Please help me by sharing/liking/following and let’s goooo!!!


08/17/2026

Thanks for asking about what totally layed me out FLAT last weekend. Getting a hair glow up was a 5 hour process, and then the next day I had a bff over. Monday I was barely able to …anything…I thought dying my hair is the literal thing that’s going to take me out!.

When my mom came home from work she asked me “how was your day?” I told her to look in the ring camera. 🙄🫤

If you haven’t seen me being dragged like a rag doll check out yesterday’s reel.

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Brea, CA
92821 - 92823

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