When Reality Hits Harder Than Expected

Yesterday’s clinic appointment was one of the hardest yet. I’ve had a lot of appointments since being diagnosed with ALS, but this one felt different—it felt heavier. It was the kind of day where the reality of what’s happening caught up to me in a way I wasn’t ready for.

We ordered a BiPAP machine to help with my breathing. A Hoyer Lift, so I can be safely moved. A cough assist device. And we began the process for a custom wheelchair. My breathing score dropped, and I could feel the weight of it all pressing down.

I’m doing my best to stay strong, but honestly? This one hit me. Hard. The pace of change is dizzying. One day I’m managing, the next I’m realizing how much support I’m going to need just to do the basics. And it’s a lot to process. It’s not just the equipment or the scores—it’s the emotional weight of watching your body change faster than your heart and mind can keep up.

But even in the heaviness, I’m still here. I’m still me. And I want to keep showing up honestly—because I know I’m not the only one trying to make peace with a new reality. I’ve said it before, but it’s worth repeating: the hard days are part of this journey too.

Thanks for walking it with me. Just wanted to keep you in the loop.

Love you all.

–Darin