Unsteadyandready

Erin here. ALS is such a beast, I’ve been really tired this week and it gets me thinking and feeling kind of blue. I’m trying the best I can. My mom is trying the best she can. And it’s frustrating that no amount of effort on our end stops me from progressing.

Arghhhhhh it keeps taking.

True story, I’m smiling because I actually walked (2 inches at a time) 6 feet and it took 3 minutes. So we are calling this a win for the day

Welcome to my ALS journey. I was 23 when I was diagnosed. No lengthy journey for me. I presented every single symptom, on a silver platter, for the neurologists to diagnose me. They say in a rare disease, I’m even rarer because I’m so young. So if it isn’t aging that made my motor neurons die. What is it?

Lunch bell rang! There was no other way to get off the shore. Everyone was so incredibly helpful for all of us in our wheelchairs. The next day, we just drove our rental van down to the shore.

Diagnosed with ALS at 23. That’s pretty rare

Diagnosed with ALS in my early 20s. I’m on an investigational drug and so I give blood test feedback every couple of months.

I could hear my mom panicking as the elevator doors closed and it started moving

She imagined me endlessly looping up and down without being able to ask for help or push a button.

And notice I’m holding her water bottle AND her coffee. You’re welcome .

Lol I love you momma!

Mom can’t shake me off that easy