I always thought I knew what ALS was. I first learned about it as Lou Gehrig’s disease— the baseball player who slowly lost function of his limbs, eventually becoming bedridden, until he lost the rest of his bodily functions. His story stuck with me as a kid, and I remember thinking how devastating this disease was.

Then in middle school, I think we all remember the ALS Ice Bucket Challenge— dumping ice water over ourselves in solidarity and to raise awareness. And as I got older, I knew of a few people who had the misfortune of losing someone to ALS. Even from the outside, I couldn’t help but grieve for them, imagining just how difficult it would be to experience firsthand.

But what the picture book about Lou Gehrig and the Ice Bucket Challenge didn’t teach me was how wildly different every ALS diagnosis can be.

My Nana was diagnosed with Bulbar-Onset ALS in March 2025. It’s a rarer form of ALS that looks drastically different from the image most people have, which is Limb-Onset. Instead of losing her limb function first, the first thing we lost was her voice.

After her voice, it was her ability to eat and drink, and then eventually her ability to breathe— only becoming bedridden in her final days. It all happened in just three months. Even though she lost her voice, she could still text us right up until just a few days before we lost her. I’m so grateful she could still communicate with us. We lost her on July 1st, 2025. It was a fast and horrific battle— not like what I had imagined, not that any version would be much better. But I did think we’d have more time.

I’m walking in her honor, and I thank you for any and all support. I'm hoping to spread awareness about Bulbar-Onset vs. Limb-Onset ALS. I only wish we had known more about what we were facing— and I hope that by sharing this, I can help someone else who might be going through it now.

I love you Nana ❤

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