ALS didn't exactly announce its arrival with flashing lights and a warning siren. It started with a hair tie.
It was the week between Christmas and New Year's in 2023. I started noticing something strange with my left hand. I couldn't extend my fingers to make the number three. I struggled to stretch open a hair tie to put my daughter's hair up. Even opening a small jar became a challenge. I could grab the lid, but I couldn't generate enough strength to turn it.
Little things. Things you do a thousand times without thinking about them. Until suddenly, you can't.
Around that same time, I noticed something else. We were celebrating the holidays, going to parties, entertaining friends and family, and enjoying a few drinks. But something was wrong with my speech. If I had hard liquor, sometimes after just the first sip, I sounded like I'd been drinking all night.
On multiple occasions, my wife, Mindy, pulled me aside and asked if I was drunk. I wasn't. And I couldn't explain why I sounded like I was. I'm sure every wife loves hearing, "I swear I've only had one sip," from her suddenly slurring husband.
By January 2024, things were getting stranger. My left bicep started twitching. Not occasionally, but persistently. Before long, the twitching spread throughout my entire body. And when I say it never stopped, I mean it. Almost three years later, my muscles are still throwing a party nobody invited them to.
Looking back, there were other signs. Subtle changes that didn't seem connected at the time. I could no longer control my sneezes the way I used to. My startle reflex was ridiculous. The slightest unexpected noise or movement would send me jumping out of my skin. And then there was the laughter.
I've always enjoyed a good laugh, but this was different. The smallest thing could send me into uncontrollable laughter, and once I started, I couldn't stop.
I remember visiting family in mid-January and playing a word game. At one point, my daughter innocently asked, "Is T-I-T a word?"
I absolutely lost it. There I was, a 41-year-old grown man, laughing like a 13-year-old boy who had just discovered his first dirty word, while Mindy kept apologizing to everyone for her husband's juvenile sense of humor.
Now, I'll be the first to admit my sense of humor has never been particularly mature, but even for me, this was excessive. The unsettling part wasn't that I found it funny. It was that I genuinely couldn't stop laughing.
At first, these things seemed like random quirks. But as they accumulated, I started to get scared.
And then came Google.
Every night, I searched my symptoms. Hand weakness. Muscle twitching. Slurred speech. Uncontrollable laughter. Different searches. Different combinations of symptoms. But the same three letters kept appearing.
ALS.
Amyotrophic lateral sclerosis. Lou Gehrig's disease.
I would read about it, convince myself it couldn't possibly be that, and then search again the next night. Maybe if I worded the question differently, Google would give me a different answer.
It didn't.
And the more I searched, the more terrified I became. I was 41 years old. I had a wife, three children, a career, and an entire life that I wasn't remotely finished living. ALS wasn't supposed to be part of that life.
I didn't want to believe it. But deep down, I was becoming increasingly afraid that I already knew what was happening.
The Night I Finally Said It
One night in mid-February 2024, Mindy and I went out with my sister and brother-in-law. I remember struggling to carry a drink from the bar using my left hand. Another simple task that suddenly wasn't so simple.
When we got home, I took our dog outside, just like I had countless times before. Except that night, he nearly pulled me over. The weakness wasn't just something I noticed when trying to move my fingers anymore. It was beginning to interfere with everyday life.
Later that evening, I was sitting on the edge of our bed, getting undressed to take a shower. And I finally told Mindy everything. The weakness in my hand. The twitching that had spread throughout my body. The trouble carrying things. Almost being pulled over by the dog. All the things I'd been quietly watching, researching, and worrying about for weeks.
She asked me a perfectly reasonable question. "Don't you think you should go see a doctor?"
I told her I was afraid to go.
She asked, "What are you worried about? What's the worst it could be?"
And for the first time, I said it out loud.
"ALS."
There's something different about saying a fear out loud. Up until that moment, ALS had lived in my browser history and in the thoughts I kept to myself. It was something I could close a tab on, put my phone down, and try to ignore.
But now it was sitting in the room with us. And I was terrified.
I wasn't afraid of needles, doctors, or medical tests. I was afraid that someone would confirm the thing I desperately wanted to be wrong about. Because once you hear those words from a doctor, you can't simply clear your search history and pretend you never saw them.
The Search for Answers
We started with my primary care provider. We explained the hand weakness, the muscle twitching, the balance issues, and, yes, the fact that we'd already committed the cardinal sin of modern medicine: Googling my symptoms.
We told her we were worried about ALS. She immediately dismissed the possibility. She said the chances of it being ALS were essentially zero. She wasn't even interested in referring me to a neurologist. When we pushed for one, she explained that she needed a better reason than "the patient wants to."
Meanwhile, my body was continuing to do things I couldn't explain.
She tried to find other explanations. Maybe the weakness and twitching were related to a recent increase in my statin dosage. We stopped the medication to see if things improved.
They didn't.
So began what felt like an endless parade of tests. Bloodwork. Imaging. Nerve conduction studies. Electromyography, better known as an EMG.
If you've never had an EMG, congratulations. I sincerely hope you never need one.
The test involves inserting needle electrodes into different muscles to measure their electrical activity. Depending on what they're looking for, they can even test muscles in your tongue. Thankfully, they spared my tongue. Apparently, sticking needles into the rest of me was sufficient.
It was incredibly painful. And the worst part wasn't even the physical pain. It was the waiting.
Waiting for another appointment. Waiting for another test. Waiting for results. Waiting for someone to explain why my body seemed to be slowly turning against me.
Every test carried two competing emotions: hope that we'd find something else, and terror that we wouldn't.
I'd spent my career working in healthcare. I understood the importance of ruling things out and working through a differential diagnosis. The nurse in me understood the process. But the patient in me was scared shitless.
Knowing how the system works doesn't make it any less terrifying when you're the one sitting on the exam table. And every day that passed without an answer was another day I had to live with the possibility that my worst fear was becoming reality.
Too Young for ALS
Fortunately, my mother wasn't particularly interested in taking no for an answer. Somehow, she managed to bully her way into getting me an appointment with a neurologist who specialized in ALS.
If you've ever met my mother, you probably understand how that happened.
Unfortunately, the first appointment wasn't the reassurance we'd hoped for. He, too, seemed quick to dismiss the possibility of ALS. I was too young. I had no family history. There had to be another explanation. Maybe stress. Maybe something else.
I wanted him to be right. God, I wanted him to be right.
But I also knew what was happening to my body. The weakness wasn't going away. The twitching hadn't stopped. The symptoms were real, and they were becoming harder to explain away.
So we went through more testing. More labs. More imaging. Another EMG. Because apparently the first round of needles hadn't been enough.
All the while, the possibility of ALS became less like a distant fear and more like something standing directly in front of me. It was an exhausting and terrifying place to exist. I wanted answers, but I was terrified of what those answers might be. I wanted someone to tell me I was wrong, but I was increasingly afraid that I wasn't.
And there was absolutely nothing I could do to make the process move faster or the symptoms disappear.
What made it especially difficult was that, on one hand, I had medical professionals telling me it couldn't possibly be ALS. On the other, I had a body that was telling me something was very wrong.
For months, I lived somewhere between those two realities. Trying to convince myself that the doctors were right. And terrified that they weren't.
August 9, 2024
One week after my 42nd birthday, I finally got my answer.
On August 9, 2024, I was officially diagnosed with ALS.
Eight months after those first strange symptoms during Christmas. Eight months of watching my body change. Eight months of appointments, tests, second opinions, and increasingly desperate attempts to find another explanation. Eight months of being terrified that I knew exactly what was wrong.
And then someone finally confirmed it. I had ALS.
There is a tremendous difference between fearing something might be true and having it officially confirmed. Up until that point, there had always been some tiny possibility that we were wrong. That the symptoms were connected to something else. Something treatable. Something that wouldn't threaten everything I'd spent my life building.
But now those possibilities were gone.
I was 42 years old. A husband. A father of three. A nurse. A guy who had spent his career helping take care of other people. And suddenly, I was facing a disease that threatened to take away my ability to take care of myself.
The irony wasn't lost on me. I'd spent my professional life caring for patients, and now I was staring down a future in which I would increasingly depend on other people to care for me.
But the fear went far beyond what would happen to my body.
What would this mean for Mindy? What would it mean for our kids? How much time would I have with them? How much of their lives would I get to be part of?
Would I be able to keep working? Would I be able to stay involved in the things that made me who I was? And perhaps most terrifying of all, how much of myself would I lose along the way?
These weren't questions that came with easy answers.
There was no reassuring explanation left. No medication side effect to blame. No different combination of Google search terms that might magically produce a better answer. Just three letters that had been haunting me since January.
ALS.
For months, I'd been terrified of hearing those words. I'd spent countless nights searching for answers, hoping I was wrong, and wondering what would happen if I wasn't.
Now I knew. But having an answer didn't mean I knew what came next.
I was 42 years old. I had a wife, three children, a career, and a life I had every intention of continuing to live. I just had no idea what that life was going to look like anymore.
It began with a weak hand, a hair tie, a very confused wife, countless late-night Google searches, and the terrifying realization that sometimes the worst thing you can imagine is exactly what's happening.
Unfortunately, getting the diagnosis wasn't the end of the uncertainty.
It was just the beginning of an entirely different kind.