February 2025
by Carly Olds
To explain what this adventure to the Super Bowl meant to me, I have to give some insight into who I am. I was diagnosed with bulbar-onset ALS at age 34.
One of the symptoms of bulbar onset is emotional lability aka uncontrollable laughing and crying.
Well, I’ve been an unashamed big ol‘ crybaby my entire life, so that symptom was nothing new.
One thing that never fails to make me teary-eyed is seeing people work together to achieve something.
This could be like a football team working in sync to win, a band performing a song, a cheerleading routine, a play… even a sentimental commercial.
I love the energy of a live sports game! The energy of the Super Bowl is so much more intense than anything I’ve ever experienced, and I was having the time of my life.
I am from Minnesota and so I am eternally bound to root for the Vikings (kidding, Skol Vikes!), but my boyfriend and caregiver Brian is a born and raised lifelong Eagles fan.
He was still in Philly until November, so one thing we would do together long distance was watch Eagles games. If there ever was a season to be an Eagles fan, it was this one.
They played outstanding football week after week and if I could talk, I’d scream GO BIRDS from the bottom of my heart.
Who knows, maybe I can help bridge the divide between Vikings and Eagles fans? Wishful thinking, but hopefully we can agree to rooting for whoever the Packers are playing.
Being there to see the Eagles block ANOTHER Three-peat plus enabling Brian to see his Eagles win was priceless.
Kendrick Lamar and SZA are two of my all-time favorite artists.
Being able to rewatch the halftime show and know I’m there in the back, bopping around in my chair and grinning…
that’s a truly special gift that would never have happened without Team Gleason.
My favorite part of the trip (besides seeing the Eagles win!) was meeting the other pALS and their families.
The most memorable and surreal part of the trip was getting to hang out ON THE FIELD before the game and meeting Steve Gleason!
I thought it was possible we may meet him since the Super Bowl was hosted at his home stadium, the Superdome.
I admire and am so grateful to everyone involved with Team Gleason and the NFL that made this possible.
Getting to thank Steve is probably one of the most meaningful things I have experienced.
The night before the Super Bowl, we were allowed into the stadium, both to see and take pictures of the Rebirth monument of Steve, but also to be shown where our seats were and everything, we needed to know day–of.
With ALS, preparation for travel or a hectic day is essential.
My biggest advice to anyone with ALS in general, but especially those preparing for an adventure, is to never wait to get any help you need.
In my case, I am talking about getting an AAC device, but that also applies to any mobility needs, a cough assist, a feeding tube.
Do not put it off because you will never regret getting it “too early”.
The biggest challenge I faced on this trip was communication.
I have bulbar onset, so my first symptoms were with speech and swallowing.
At this point in my progression, there is almost no chance of understanding me if there is any background noise.
I have the Speech Assistant app for iOs to use for typing/playing messages out loud. However, I have almost no function with my right (dominant) hand and maybe 80% in my left hand. That makes it very cumbersome to pick up, unlock, and then type into my phone.
My boyfriend/caregiver, mom, and brother all worked together to support me but an AAC device would have been extremely useful.
Thankfully, at the time of this writing, I am in the process of securing funding for an eye gaze device.
As with every single step of my journey, Team Gleason is involved and doing everything they can to help me navigate the next steps.
Team Gleason would like to personally thank Andrew Jo for helping to make this adventure possible!
