Iowa native opens up about life with ALS and journey to find a cure

AVOCA, Iowa — ALS, also commonly known as Lou Gehrig’s Disease, affects roughly 30,000 people nationwide and currently has no cure. But one Iowan isn’t taking “no” for an answer. Leslie Krummel is an Avoca native who is not only living with ALS, but is actively fighting it.

Leslie’s journey to her ALS diagnosis involved a year of doctor appointments, blood tests, screenings, and unwavering perseverance. ALS is a difficult disease to diagnose, and Leslie says she “had to do a lot of pushing and self-advocacy because it’s rare and they don’t believe you have it.” She was finally diagnosed in 2018.

Leslie first learned about the disease just four years earlier when she took part in the viral Ice Bucket Challenge.

“I had no idea what ALS was I had to look it up, and four years later I was diagnosed,” said Leslie.

This diagnosis transformed her life in an instant. After reviewing the news, Leslie said she was relieved.

“I was actually relieved to finally give a name, even though I had already figured it out for myself, but it was like, okay, now we know what we have to fight,” she said.

Her husband, Mike Krummel, knew Leslie wasn’t going to let this diagnosis overtake her life.

“She wasn’t just going to sit back and let it take its course because they gave us three to five [for her to live], they gave us three to five years, that’s the normalcy when you’re diagnosed,”

With time passing by, Leslie’s fight began just a month after her diagnosis where she and fellow ALS advocates lobbied in Washington D.C. for ALS funding. Leslie described the trip as “an eye-opener because I was still functioning. I was walking and talking, just slower, and I saw a lot of people way more progressed than me”

Seeing the reality of the road ahead, she quickly connected with local resources, including the ALS Association of Iowa, which has supported her at every stage of her journey.

And for caretakers like her husband Mike, the ALS association was able to help them prep for the future.

“They come in and they take you by the hand, they walk you down through it,” he said.

Before her diagnosis, Leslie was often tripping and twitching. After being connected to the ALS Association of Iowa, Leslie said they immediately got her help.

“Right away they said you’re going to need a power chair, and so they started that process right away, although I didn’t really use it right away up until last year full time.”

In addition to her advocacy work, Leslie has taken part in several clinical trials focused on finding a cure for ALS.

“If there’s a trial out there that they can experiment with, you know, we get to have people to do that. So, she’s not afraid to do that. We’ve been to different states and trials, Kansas and California, whatever she can to help find a cure,” said Mike.

Leslie is also open about her personal experiences with ALS and hopes to help others who share her diagnosis. Soon after her diagnosis, Leslie created a private Facebook page to share updates on her journey.

“When I was diagnosed, I’m like, I need support. I can’t do this on my own,” she said. “So I started a little private Facebook group and just said, I have an appointment. Can you guys say a prayer? Just kind of kept them up to date on what was going on and I would kind of write stories on there of just my experiences.”

Those stories, now compiled into two books, offer a behind-the-scenes glimpse into her daily life with ALS.

Her husband is a silent supporter of the books.

“It talks about us, and what we’re going through, but no I have not made myself read it, I don’t know if I could,” he said.

Through the highs and lows, Leslie has found moments of normalcy. Before her diagnosis, she taught classes at the YMCA; now, she teaches virtually.

“They wouldn’t let me quit. But they do listen. There are times when I wonder if I say, get on the ground and they disappear for push-ups, I don’t know if they did them,” said Leslie.

Leslie also travels with her family for vacations in Okoboji and even attended Super Bowl 58 with Team Gleason to cheer on the Kansas City Chiefs.

“We’re very active and we still are,” she said. “It just looks different.”

She does all that while actively striving to discover a cure for a currently incurable disease.

Leslie said that she never expected to become such a strong advocate for the disease at the beginning of her ALS journey.

“You don’t think you’re going to live more than two years. So, to be here six years later is amazing.”

Leslie’s advocacy work continues to this day, as she plans to attend the Defeat ALS Walk in Des Moines on October 12 to raise money for the ASL Association of Iowa. To learn more about the walk, how to donate, and how to participate, click here .

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