His race against ALS: 50 marathons in 50 states

Andrea Peet had just completed the 11th mile of the 2020 Mississippi Blues Marathon when she felt a sudden jolt. She had already bypassed several potholes on the course, but she had seen this one too late. His recumbent tricycle veered off course. As she stabilized the wheels, she realized she had a bigger problem: she couldn’t pedal.

She stopped on the side of the road and called her husband, David.

“I can’t move the pedals,” she told him. She couldn’t see what was wrong, but guessed it was the trike’s gear system. David was in downtown Jackson, four miles away, and all roads were closed for the race. “I’m on my way,” he said. He started running.

In the meantime, Peet accepted that she probably wouldn’t finish the race. The Mississippi marathon was 16th in its quest to complete one in every state, while battling amyotrophic lateral sclerosis – the progressive disease better known as Lou Gehrig’s disease, which takes away the ability for voluntary muscle movement, affecting actions such as chewing, walking and talking. We’ll just come back, she thought.

Half an hour later, David appeared with a large backpack. He pulled out his phone and found a YouTube video with instructions on how to fix the trike chain. Once back up, he looked at Peet, his face smeared with bicycle grease.

“You are ready to go,” he said.

She could pedal, only now she couldn’t shift gears. It was just after 9 am. They had to be in Little Rock, Ark., by 6 p.m. picking up packages for his upcoming marathon the next morning. The trip was a little over four hours, and they also had to get his trike repaired.

She pedaled. Pain raced through her quads on steeper sections as she yearned for a shift. She had to stop at several places to rest. She forced her legs to keep moving, even when her left knee ached. She completed the marathon in four hours and 59 minutes.

She and David stopped at the nearest bike shop for repairs before racing to Arkansas. They arrived at the Little Rock Marathon package pickup a few minutes before it closed.

Peet laughs to herself. That was life with ALS. She was always racing against a clock.

Peet, 41, didn’t start running until he was 29. His first run – on a treadmill – lasted only 15 minutes. But she found it exhilarating. She signed up for a few races and added cycling and swimming to her workouts to train for triathlons.

In early 2013, Peet noticed that her right index finger couldn’t fully extend while she was swimming. She began to struggle to put on her cycling gloves and sometimes inexplicably fell. David noticed that his speech was becoming difficult to understand.

In November of that year, she ran a 7.9-mile relay leg of the Oaks City Marathon in Raleigh, North Carolina. But his body did not cooperate. She had to go through all the downhill sections to not fall.

It was the last run she would run.

Peet assumed her symptoms were due to some sort of injury, so she made an appointment with a physical therapist. Two months later, she visited a neurologist at Georgetown University who performed various screenings. He initially ruled out ALS

Over the next few months, doctors and specialists were unable to make a diagnosis. Peet’s physical condition worsened. She started using a cane to walk, then two canes and a walker.

In August 2014, a Johns Hopkins neurologist confirmed what she and David had suspected: Peet had ALS The life expectancy of someone with ALS is two to five years, and there is no no remedy. She was 33 years old.

Peet was frustrated that she had spent nearly a year of that life expectancy trying to figure out what was wrong. Now she had a thought, “I have no more time to waste.”

Several months prior, Peet had signed up for a fall sprint triathlon with a friend, Julie Wesner. She could still swim, albeit slowly, and she could walk with help. But since she couldn’t balance on a bike anymore, she called Wesner to cancel. Instead, Wesner asked if she had looked into a recumbent trike. Peet bought one the following weekend.

They would race together. Peet used two trekking poles for balance during the running portion. His toes curled, his feet dragged, and his knees locked with every step. Wesner held his arm the entire time. They were the last two to arrive, greeted by a crowd of spectators who had waited nearly an hour to cheer on the duo.

“It changed everything,” Peet said. She described the atmosphere of the race as “a laser filled with the best of humanity, aimed directly at me”.

She decided to keep running, as long as her body would allow. She established a daily workout routine — pool exercises, Pilates training, weightlifting and trike rides — to stay active.

In October 2016, she started her own nonprofit, the Team Drea Foundation, to raise awareness and funds for ALS research.

Peet surpassed the average ALS life expectancy in the summer of 2019.

In doing so, she realized that she was tired of waiting for the disease to kill her. So Peet pondered the biggest and most daunting challenge she could face: becoming the first person with ALS to complete 50 marathons in 50 states.

Peet wasn’t sure she would live long enough to finish. And David worried about his physical well-being: would this level of activity – both running and traveling – accelerate his symptoms?

“I don’t know how much time I have left,” she told him. “I have to make it count.”

Whether Peet should run is one that doctors and ALS researchers have yet to decide.

ALS causes muscles to atrophy, leading to eventual paralysis and the inability to swallow, speak and breathe. But after Peet lost his ability to walk independently and speak clearly, his disease progression was slow, said Dr. Richard Bedlack, his ALS doctor at Duke University.

Dr. Fernando Vieira, chief executive and scientific director of the ALS Therapy Development Institute, who has tracked Peet’s progress while she worked with the institute, calls her “an extreme outlier.”

“I don’t know of anyone else in the ALS community who can take the eight-year journey that she had where she’s still doing these marathons,” he said.

By March 2020, Peet had completed 17 marathons in 17 states, with the help of a rotating cast of family and friends. She and David were due to fly to California for her 18th marathon on March 20, 2020. But the pandemic erupted and the races were abruptly postponed and then canceled altogether.

As April turned to May and May to June, Peet was restless. Every day she rode her trike around her cul-de-sac. In June 2020, she completed the Tri-State Trek, a 270-mile race that took place virtually instead of her usual route from Boston to Greenwich, Connecticut, circumnavigating this 0.1-mile loop .

When a few marathons reopened in August, Peet found a series of three races in Idaho, Utah and Wyoming that were to take place over three consecutive days. She and David packed up their car and drove west from their home in Raleigh.

At the end of 2020, she was halfway to her goal.

Ever since she set her goal of 50 out of 50, Peet had dreamed of running the Boston Marathon.

But she had been rejected due to official Handcycle Division rules, which prohibit her type of trike.

The only way for Peet to officially enter was if someone pushed her in a wheelchair. She was determined to run Boston alone.

So, the day before the famous race, she and David loaded up their car and drove to the start line in Hopkinton, Mass. The 26.2 mile course was marked in preparation for the next morning, but the roads were still open. Three friends were driving alongside Peet, and another was driving behind them with the car’s hazard lights flashing.

Peet cycled through the first few miles in the early morning calm. The air was crisp and cool; as the sun began to rise, joggers and bikers waved or raised a fist. Peet waved or smiled back.

Peet was unable to watch runners for the first year after his diagnosis. If she did that accidentally, she would look away and cry.

Like the approximately 25,000 Americans living with ALS, her daily life is a struggle. An affable extrovert, she often chooses to remain silent with those who cannot decipher her fuzzy speech. When asked to be a guest on a podcast, she had to ask a friend to speak for her. Typing an email can take 45 minutes. Crossing a street for the duration of a crosswalk signal is nearly impossible.

Recently, when a wheelchair wasn’t waiting for her at an airport gate, Peet headed to baggage claim with her walker. She maneuvered slowly, upper body leaning to the right, left foot dragging. She arrived sweaty, exhausted. But these are good problems, Peet said. She knows that one day she won’t be able to walk at all.

Riding the trike, she says, is the only time she feels free. She thinks about what her muscles can do rather than what they cannot.

She made the famous Boston Marathon turn – right on Hereford, left on Boylston – flanked by a group of runners who had joined her.

Friends were waiting for Peet at the finish line and had informed nearby police of his race. Officers cleared the last quarter mile of Boylston Street for Peet’s arrival. As she walked through the finish, she was smiling broadly, both arms raised.

Peet does not know his own life expectancy. But she knows how she wants to spend her remaining days: raising awareness and funding ALS research (to date Team Drea has raised $850,000), writing memoirs, filming a full documentary about her journey and races.

Peet’s final 50-in-50 run (she will have completed 52 marathons by then) will be on Prince of Wales Island, Alaska, on Saturday.

“I don’t want people to be like, ‘ALS isn’t that bad, it runs marathons,'” Peet said. “I don’t know anyone else like me. But that doesn’t mean they’re not there. I want people to try to keep fighting.

While riding his tricycle, Peet remembers the feeling of running: one foot hitting the ground, then the other, arms swinging back and forth, lungs filling, the steady cadence of breathing and body.

“I’m a runner,” she says to herself as she pedals.

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