April 2024
by Wes Waites

Over the past year, everything has changed. Some would say for the worst, but I’d say for the better.

I’d known for a couple years something was wrong, but I’m a guy and chalked it up to work and overdoing it, I was sadly incorrect. I’m blessed with a wonderful and understanding wife and an incredible mother-in-law, and a faith we have that no matter happens we just face it head on, together.

Together being the key word, you can’t do this alone. That’s where organizations like Team Gleason step in. Our world imploded and without organizations like Gleason to help navigate these waters it would be impossible not to drown. 

My wife and I are young as far ALS goes, both 44, and nobody thinks that the “second half” is going to involve something like this horrible disease, but there comes the blessing, the knowing.

All the small stuff that seemed so big before, well they aren’t so big or important anymore. Gratitude comes over you for literally everything and everyone, the true angels among us show their wings, and you find yourself with a circle that grows larger now.

The past year since my diagnosis in July of 2023, has been a journey, almost my odyssey. Learning the healthcare system, to acquiring equipment, figuring out the best path for us going forward, none of this could be done without organizations like Team Gleason. 

Then here comes Emily with Team Gleason. Absolutely adamant I take a trip, so I digressed and submitted for a mountain trip to Pigeon Forge, no real adventure here, more of a respite. A time to reflect a bit, let emotions of the past year come out, and to at least try to NOT think about ALS for at least a moment.

It was beautiful, absolutely breathtaking and soul cleansing. I saw fireflies for the first time in a long time, saw a shooting star, and drank my first glass of wine ever while sitting in a hot tub looking down the side of a mountain. It was much needed and appreciated.

We went to the titanic exhibit while there, not set up for handicapped persons, but it was very humbling to see the items on display and to remember those who passed on that horrible day.

Then we shopped. Yes, that may seem silly, but for the past year it’s been nothing but medical decisions and Dr appointments and hard life decisions and choices, so for a day or two, I got to see my wife and mother-in-law in their element, looking for deals, not thinking of ALS.

Thank you, Team Gleason, for the adventure/ respite trip, and all of the other incredible programs you have to help families wade through these waters. Thank you for allowing my two incredible caregivers at least a weekend to breathe, and me the opportunity to share it with them. To anyone out there reading this, be kind. Before this, I was wrapped up in my own world and its happenings, and it’s a daily practice in patience, but every single person we encounter has something they are struggling with, just because they look ok, doesn’t mean that they are. 

Blessings to all,
Wes, Carla, and Grammy