ALS Update: Where I’m At, What’s Next, and How I’m Really Doing

Hey friends,

I wanted to take a moment to share a personal health update — not because I love talking about symptoms or progression (trust me, I don’t), but because I know many of you have been following this journey closely. And if there’s one thing I’ve learned through all of this, it’s that vulnerability builds connection. So here we go.

Physically, things have changed.

The ALS continues to do what ALS does. My muscles are weaker than they were even a month ago. I need more help now — with everyday things, like eating, walking, speaking. Some days are better than others, but most days are hard. There’s no sugarcoating it.

Mentally though? I’m still in the fight.

I’m still showing up, in whatever way I can. I'm still creating. Still laughing. Still choosing joy — even when it's a defiant kind of joy. The kind that stares a terminal illness in the face and says, not today.

I’ve had to let go of a lot. My job. My independence. The version of my life I thought I’d be living right now. That part has been heartbreaking. But I've also gained things I never expected: deeper relationships, a flood of support from friends (new and old), and a profound sense of clarity about what actually matters.

If you’ve reached out to check in, thank you. If you’ve dropped off snacks, prayed for me, sent a funny meme, or just been there — you’re part of the reason I can still smile through the hard stuff. You’ve reminded me that even when the body breaks down, the soul can still rise.

So what’s next?

I don’t know. And that’s the truth. But I do know this: every day I wake up, I’ve got a choice to make. And most days, I choose hope. I choose to keep documenting this journey — not because it’s easy, but because someone else out there might need to see what it looks like to live fully, even while dying slowly.

If you're struggling right now, I see you. You're not alone.

Thanks for walking with me. Let’s keep going — one breath, one laugh, one small moment of joy at a time.

With love,
Darin