Looking back, it’s strange how something so small can quietly change the direction of your life.

In 2020, I was selling software for a living. A big part of my job was running remote product demonstrations — 7 to 8 hours a day, five days a week — constantly clicking, moving, presenting, and navigating on my computer. Somewhere along the way, I started to notice that using a mouse was getting harder. My hand didn’t quite respond the way it used to. Simple movements felt clumsy. Fatiguing.

At first, I did what most people would do: I brushed it off. I assumed it was carpal tunnel. After all, who wouldn’t have wrist or hand issues after that many hours of demos every week?

In October of 2020, I saw a hand specialist fully expecting confirmation of carpal tunnel. Instead, I was told I didn’t have it. That answer brought relief — and confusion. If it wasn’t carpal tunnel, then what was it?

Over the next three months, the questions only multiplied.

I went through X-rays, MRIs of my neck and back, nerve conduction studies, and eventually electromyographic testing (EMG) at Cedars‑Sinai. All of this was happening during COVID, which added another layer of isolation and uncertainty to an already unsettling process.

Then came January 27, 2021.

That morning, I received a phone call from an assistant neurologist at Cedars‑Sinai. Over the phone — not in person — I was told that I had ALS.

I was in complete shock.

I remember hanging up the phone, breaking down, and telling my wife through tears what I had just been told. It didn’t feel real. It couldn’t be real. Yet it was.

The doctor told me they wanted me back the very next day and warned me to expect a 6–7 hour session meeting with the full ALS care team.

The next day was, without question, one of the longest days of my life.

Specialist after specialist came into the room. Neurology. Physical therapy. Occupational therapy. Speech. Nutrition. Social work. Each conversation ended the same way:

“Go home, get your life in order, and plan for the worst.”

That sentence landed over and over again. By the time we finally left, I felt emotionally and physically drained in a way I had never experienced before.

That night? I’ll be honest — I had a couple of very strong cocktails.

Over the next two to three weeks, my wife and I kept the diagnosis to ourselves. We didn’t tell our kids. We didn’t tell friends. We didn’t tell extended family. Instead, we quietly tried to plan for a future we never expected to have to think about.

I won’t bore you with all the details, but planning for your possible death — before you ever imagined needing to — is incredibly overwhelming.

There were conversations about finances, insurance, home modifications, and eventually moving into a house better suited for a wheelchair. And that’s just scratching the surface.

Three weeks later, we finally told our two children.

That conversation was one of the hardest moments of my life — one I will never forget. No parent is prepared to explain something like ALS to their kids.

As I continue to share my story, I plan to do it in a timeline format. This journey didn’t happen all at once — it unfolded step by step, moment by moment. My hope is that by sharing it this way, it helps others feel less alone, more informed, and more supported.

Thank you for being here and for walking this journey.

Frosty

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