ALS survivor Andrea Lytle Peet refuses to stop moving
By Mira Brody EBS STAFF
RALEIGH, NORTH CAROLINA – Andrea Lytle Peet has six swallows tattooed on her forearm, one for each year she’s lived since being diagnosed with amyotrophic lateral sclerosis, or ALS, at the age of 33. Her most recent swallow has a mask on—symbolic of the pandemic year that was 2020—and now, at 39-years-old, she’s planning to get her seventh bird this year in Spokane, Washington, where she’ll compete in her 28th recumbent bike marathon. Her goal is to cover her entire arm.
“Swallows are a symbol of hope because they would be the first birds that sailors would see to know that they were close to home,” Lytle Peet said while showing her tattoos over a Zoom call with EBS in early May.
On Memorial Day weekend, she will complete Big Sky Wind Drinkers’ Frank Newman Marathon, a route that traverses Bridger Canyon, the entirety of Bozeman Pass and finishes at Sacajawea Park in Livingston. It’ll be her 30th of 50 marathons—each in a different state—a project she started in 2019 with a twofold purpose: to raise money and awareness for ALS, and to express her refusal to sit and let the disease determine her fate.
“Eventually I was tired of waiting around for this disease to kill me, I just wanted to do whatever I wanted,” said Lytle Peet. “When I reached five years [since being diagnosed] in 2019, I was like, ‘I want to do something.’ The biggest thing that I could think of was a marathon in every state. Only 20 percent who have ALS have three to five years, so that was a really big milestone.”
While running 50 marathons may sound like a steep undertaking, Lytle Peet can complete up to three marathons a week on her recumbent bike—on which the rider lays on their back, close to the ground—and she averages a 3:30 to 4:15 marathon time. Although she and her husband, David Peet, prefer to fly, they’ve been taking advantage of travel limitations placed by the pandemic by seeing more of the country from their Subaru.
ALS, also known as Lou Gehrig’s disease, causes nerve damage and a weakness of muscles, reducing motor functionality over time. There is no known cure, but some medications can slow progress or lessen symptoms. Lytle Peet was diagnosed in 2014 after she began experiencing tremors and slurred speech, right around the time she and her husband had just bought a house and were thinking of starting a family. In the span of eight months, she went from competing in triathlons and a half Iron Man to walking with a cane. Because she is considered a “slow progressor,” however, she does not qualify for research trials—a frustrating irony that many ALS patients face, like Eric Stevens.
Stevens, alongside his wife, Amanda Stevens, and his family and friends, is fighting his own battle against ALS with his foundation, Axe ALS. Stevens, an accomplished athlete and firefighter, was diagnosed at 29, just weeks after his and Amanda’s wedding.
“I think it’s incredible,” said Stevens. “You’re already battling such a devastating disease and not letting it get you down or letting ALS define you or hold you back. It’s also bringing more awareness to the cause. It’s inspiring.”
Axe ALS’s mission is to challenge Congress and the FDA so patients can gain access to possibly life-saving drugs, currently stuck in clinical trials that very few patients have access to.
“Our fight right now is to try and get a congressional hearing to try and get Congress and the FDA to figure out what’s wrong here,” said Amanda. “I feel like with ALS the bar is set so high. With Andrea and Eric, their diseases are so different yet we hold ALS to this one-size-fits-all disease.”
Both Lytle Peet and the Stevens’ say that despite the frustrations, there is power in hope.
“It’s not just about a cure,” said Eric. “It’s about moving forward.”
Moving forward is actually the focal point of Lytle Peet’s journey and documented in the film “Go On Be Brave.” The documentary also highlights Lytle Peet’s nonprofit, the Team Drea Foundation, which has so far raised more than $600,000 for ALS research. The foundation sends most donations to a research lab called ALS TDI out of Massachusetts. Lytle Peet started Team Drea in 2015 not only to raise money, but also to inspire others to push themselves out of their comfort zones and to admire what our bodies can do.
“It’s just an appreciation for the human body, something that ALS takes away,” Lytle Peet said. “I just want people to appreciate that [fitness] is more about the journey than losing five pounds. I want to expose more people to ALS and let people know that we’re making progress … [a cure] may not come in my lifetime, but we are now making progress.”
Although she’s an advocate for athleticism, over the years doctors have wavered on whether or not it further aggravates ALS symptoms. But despite this, Lytle Peet remains active and in high spirits.
“The most frustrating thing about my diagnosis process is that in the beginning I was told not to exercise,” she said. “So I went from the strongest I’ve ever been, to not doing anything, so I lost all of the muscle. Now I am finding that I can buy that back if I’m slow and deliberate about it.”
One thing she doesn’t allow for is for anyone to push her bike.
“It’s about independence,” Lytle Peet said. The Davidson College alumni worked as a city planner before her diagnosis and now runs the day-to-day operations of the Team Drea Foundation. “It’s been hard for me to accept help, and accept that I can’t do the things that I want to do, but I always come back to the gratitude for what I can do.”
Her 50th marathon, the grand finale, will be the Prince of Whales Island Marathon in Alaska on Memorial Day weekend of 2022, a year after she pedals through Montana. The small community of about 5,000 has been following her journey and has invited her to speak as a guest at the local schools. Her neurologist, Dr. Richard Bedlack of the Duke University ALS Clinic, will be present. Dr. Bedlack is known not only for his research in ALS, but also his flashy suits, and is known by many as the “rock star neurologist.”
“Andrea’s always wanted to go to Alaska, it’s always been on the bucket list for her and her husband,” said Shaw Hipsher, a friend of Lytle Peet’s and a volunteer for the Team Drea Foundation. “We think of Alaska as just so wild, as this frontier for our nation and to me this aligns with this medical frontier that Andrea is pushing for.”
Lytle Peet says although her 50 marathons project started out as a goal, it has been the journey itself that has been most fulfilling. With each race, she learns something more about herself and her limitations, she says, and she feels that same energy from the other racers around her.
On May 29, Lytle Peet will be cresting the hill that is Bozeman Pass, the Bridger, Gallatin, Madison and Absaroka mountain ranges surrounding her as she ascends into Livingston to complete the 30th marathon in her journey. Whether it’s checking off races or adding sparrows to her arm, she’ll continue crushing her milestones, advocating for other families battling ALS, and encouraging everyone to reach their potential.