Side by Side for ALS Calgary Ambassador, Dan Pubben!

Hi, I’m Dan Pubben! My journey to an ALS diagnosis was quick and completely out of nowhere. When I started yawning more than normal in March 2024, I thought it was just me being 42 with young kids.

I was fairly active with soccer and flag football and working hard enough, so I figured it was just me being tired! My left bicep started twitching in August 2024 and it wouldn’t stop. (Word of advice? Don’t Google symptoms!) I checked off all the ALS boxes and had myself convinced that’s what it was. After a plethora of tests and visits to multiple doctors, my worst fear was confirmed on October 18, 2024.

I accepted my fate rather quickly. I knew there was no cure or effective treatments and ultimately, there was nothing that I could do. In 2 to 5 years, my time would be done. At that point, I saw two options. The first was to throw in the towel, sit back and let ALS slowly but surely take over (no thanks!). I went with option 2, which was to stand tall, muster all the strength I could find and laugh in the face of the uncontrollable. If I wasn’t going to beat this, you better believe I was going down swinging! I decided to focus on the present and the happiness that was still attainable.

I got to work. First up, a big accessibility renovation at home followed by planning some bucket list trips! Lifelong memories were made with my family in Disney World and Mexico, and with friends in Florida and Vegas, following my biggest love, other than my family, the Edmonton Oilers. Make no mistake, there’s nothing that compares to Roger’s Place for an Oilers home playoff game! 

And yes, I’m a true Oilers fan representing Calgary. I might cheer in blue and orange, but when it comes to ALS, we’re all on the same team.

Through it all, I was aware of what was still on the horizon. ALS was affecting my speech, and my strength was quickly declining. I also knew there wasn’t enough talk and funding around ALS. There had to be something I could do.

I was learning every day that more than anything, ALS takes a lot of strength. I knew that I could find that strength in our community. I created Dan’s Night to Fight, an annual gathering of friends, strangers, and family. It’s a night of hope, togetherness, strength in numbers, and standing up to ALS with courage and positivity. Led by a community driven silent auction and a pop-up tattoo studio, I was able to raise just over 41K! I wouldn’t have been able to achieve any of this without standing Side by Side with my village and the incredible people in it. It brought me new levels of humility and gratitude. 

Make no mistake though, ALS is cruel, relentless, and pulls no punches. It takes, takes, and then takes some more. My voice gets worse by what seems like weekly and I can do almost nothing for myself anymore. Menial and mundane tasks are extremely difficult and unscratchable itches are the norm. The way I see it, I can’t control it, so I don’t focus on it. My focus has to remain on maintaining who I am as a person; kind, loving, and positive. ALS can work on paralyzing me all it wants but it won’t come anywhere near my spirit! I have to show my kids that even though life is trying to break me and knock me down, it’s important to keep getting up, stay strong and move forward. I have to support my wife in any way I can. She has been my pillar of strength, my shoulder to cry on and my absolute everything. I can’t do these things by being sad all the time so I must continue to fight like a boss and keep on keepin’ on!