The last couple years have been full of big changes for Lee Olson. His home in Milwaukee’s Tippencanoe neighborhood has been refitted to accommodate his wheelchair: new ramps, changes to door frames and removing molding to make sure he can get around. He's had to learn how to use a wheelchair in a short time frame. He and his wife Erin even bought a new car to accommodate the new chair. All of this because Lee was diagnosed with ALS.
ALS, also known Lou Gehrig’s disease, is a degenerative disease that affects a person’s ability to move their body. It’s unclear why it happens — it isn’t generally linked to any family history or exposure — but the disease moves very quickly. Most people can expect to live two to five years after symptoms appear. Lee's symptoms started about two years ago.
"Knowing that these symptoms started just about two years ago, knowing that I'm in that window already is heartbreaking," he says.
Lee's journey to a diagnosis was difficult, due in large part to the absence of definitive testing for ALS. "It was a frustrating 16 months," he explains. "Going to doctors, getting MRIs, CAT scans, PET scans, the one in the back that hurts a lot — oh, a spinal tap? Not as good as the band, very terrible. And probably other things that I can't even think of."
The results would clear him of other illnesses, but didn't point to what he had. All the while, Lee's body was getting weaker. After nearly a year and half of testing, Lee was finally diagnosed with ALS in December of 2022. It has been a painful journey, but it's also pulled him closer to his loved ones.
"I have learned that I'm very loved, very supported, because so many people have stepped up to help Erin and I with many tasks: chores around the house, cleaning up the backyard, taking Dakota [dog] for a walk, getting me to doctors appointments. ... But on the other hand, it is incredibly frustrating to have this disease and not really be able to do much about it, as it is a progressive disease that's only going to continue to take away my everyday functions until I pass."
This Friday, Lee will be at American Family Field for the Chasin' a Cure Tailgate, celebrating Lou Gehrig, a baseball player whose battle with ALS brought greater public awareness to the disease. Lee says he's excited, but a little scared to meet other people with ALS.
"I don't really have a mirror in front of me ever, so I don't see what I look like. ... Ignorance is bliss, I guess. I don't have to know what I look like, I don't know if I look different because I don't see that. ... I'm just hesitant to see someone further down the road, that could be scary," he explains. "I'm excited and nervous to see people, but also know that hey, these people are doing well, they're coming to the game, they're excited to eat a hamburger or three and eat some chips and drink a Sprite, and then go watch the Brewers beat the A's."
Lee's friends and family have set up a Go Fund Me to help with his medical costs and his journey with ALS.
