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Her Race Against A.L.S.: 50 Marathons in 50 States

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Andrea Peet had just passed the eleventh mile of the 2020 Mississippi Blues Marathon when she felt an abrupt jolt. She’d already steered around several potholes on the course, but she had seen this one too late. Her recumbent trike veered off target. As she steadied the wheels, she realized she had an even bigger problem: She couldn’t pedal.

She coasted to 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 unsuitable, but she guessed it was the trike’s gearing system. David was in downtown Jackson, 4 miles away, and all of the roads were closed for the race. “I’m on my way,” he said. He began running.

As she waited, Peet accepted that she probably wouldn’t finish the race. The Mississippi marathon was the sixteenth in her quest to finish one in each state, all while battling amyotrophic lateral sclerosis — the progressive illness more commonly often known as Lou Gehrig’s disease, which takes away one’s voluntary muscle movement ability, affecting actions corresponding to chewing, walking and talking. “We’ll just come back again,” she thought.

A half-hour later, David appeared with a big backpack. He pulled out his phone and located a YouTube video with instructions on tips on how to fix the trike chain. Once it was reassembled, he checked out Peet, his face smeared with bike grease.

“You’re good to go,” he said.

She could pedal, only now, she couldn’t shift gears. It was just after 9 a.m. That they had to be in Little Rock, Ark., by 6 p.m. for packet pickup for her next marathon the next morning. The drive was just over 4 hours, and in addition they needed to get her trike fixed.

She pedaled onward. Pain shot through her quads on steeper sections as she longed for a gear shift. She needed to stop at several points to rest. She willed her legs to maintain moving, even when her left knee ached. She finished the marathon in 4 hours and 59 minutes.

She and David stopped at the closest bike shop for repairs before speeding toward Arkansas. They arrived on the Little Rock Marathon packet pickup just minutes before it closed.

Peet laughed to herself. This was life with A.L.S. She was all the time racing some form of clock.

Peet, 41, didn’t start running until she was 29. Her first run — on a treadmill — was only quarter-hour. But she found it exhilarating. She signed up for a couple of races and added biking and swimming to her workouts to coach for triathlons.

In early 2013, Peet noticed that her right index finger couldn’t fully extend while she swam. She began struggling to placed on her biking gloves, and would inexplicably fall sometimes. David noticed her speech was becoming obscure.

In November of that yr, she ran a 7.9-mile relay leg of the City of Oaks marathon in Raleigh, N.C. But her body wouldn’t cooperate. She needed to walk all the downhill sections to maintain from falling.

It was the last footrace she would run.

Peet assumed her symptoms were attributable to some type of injury, so she scheduled an appointment with a physical therapist. Two months later, she visited a Georgetown University neurologist who performed various screenings. He initially ruled out A.L.S.

For the following several months, doctors and specialists were unable to pinpoint a diagnosis. Peet’s physical condition worsened. She began using a cane to walk, then two walking sticks and a walker.

In August 2014, a Johns Hopkins neurologist confirmed what she and David had suspected: Peet had A.L.S. Life expectancy for somebody with A.L.S. is 2 to 5 years, and there isn’t a cure. She was 33.

Peet was frustrated she had spent near a yr of that life expectancy attempting to determine what was unsuitable. Now, she had one thought: “I haven’t any 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 he or she could walk with assistance. But since she couldn’t balance on a motorbike anymore, she called Wesner to cancel. As a substitute, Wesner asked if she had looked right into a recumbent trike. Peet bought one the following weekend.

They might do the race together. Peet used two trekking poles for balance in the course of the running portion. Her toes curled, her feet dragged, and her knees locked with every step. Wesner held her arm your complete time. They were the last two finishers, greeted by a crowd of spectators who had waited almost an hour to cheer for the duo.

“It modified every thing,” Peet said. She described the race atmosphere as “a laser full of the best of humanity, aimed directly at me.”

She decided to maintain racing, so long as her body would allow her. She established a day by day workout routine — pool exercises, Pilates training, weight lifting, and trike rides — to remain energetic.

In October 2016, she began her own nonprofit, the Team Drea Foundation, to boost awareness and funds toward A.L.S. research.

Peet surpassed the typical A.L.S. life expectancy in the summertime of 2019.

In doing so, she realized that she was uninterested in waiting for the disease to kill her. So Peet brainstormed the most important, most daunting challenge she could try: to develop into the primary person with A.L.S. to finish 50 marathons in 50 states.

Peet wasn’t sure she would live long enough to complete. And David was concerned about her physical well-being: Would that level of activity — each racing and traveling — speed up her symptoms?

“I don’t know the way much time I even have left,” she told him. “I’ve got to make it count.”

Whether Peet needs to be racing in any respect is an issue doctors and A.L.S. researchers have yet to conclude.

A.L.S. causes muscles to atrophy, resulting in eventual paralysis and the lack to swallow, speak, and breathe. But after Peet lost her ability to walk independently and speak clearly, her subsequent disease progression has been slow, said Dr. Richard Bedlack, her A.L.S. physician at Duke University.

Dr. Fernando Vieira, the chief executive and chief scientific officer on the A.L.S. Therapy Development Institute, who has tracked Peet’s progress while she has collaborated with the institute, calls her “an extreme outlier.”

“I don’t know anyone else within the A.L.S. community who can have the eight-year journey she’s had where she continues to be doing these marathons,” he said.

By early March 2020, Peet had accomplished 17 marathons in 17 states, with the assistance of a rotating solid of family and friends. She and David were scheduled to fly to California for her 18th marathon on March 20, 2020. However the pandemic intruded, and races were abruptly postponed, then canceled altogether.

As April turned to May and May to June, Peet was restless. Every day, she rode her trike round her cul-de-sac. In June 2020, she accomplished the Tri-State Trek, a 270-mile race held virtually as a substitute of on its usual route from Boston to Greenwich, Conn., circling round and round that 0.1-mile loop.

When a couple of marathons reopened in August, Peet found a series of three races in Idaho, Utah, and Wyoming scheduled to be held over three consecutive days. She and David packed their automotive and drove west from their home in Raleigh.

By the top of 2020, she was halfway to her goal.

Ever since setting her 50-in-50 goal, Peet had dreamed of racing within the Boston Marathon.

But she had been rejected entry attributable to the official rules inside the Handcycle Division, which forbids her kind of trike.

The one way Peet could officially enter was if someone pushed her in a wheelchair. She was determined to race Boston on her own.

So the day before the famed race, she and David loaded their automotive and drove to the beginning line in Hopkinton, Mass. The 26.2-mile course was marked in preparation for the following morning, however the roads were still open. Three friends would cycle alongside Peet, and one other would drive behind them with the automotive’s hazard lights flashing.

Peet pedaled through the primary miles within the quiet of early morning. The air was crisp and funky; because the sun began to rise, joggers and bikers gave her a wave or a pumped fist. Peet waved or smiled back.

Peet couldn’t take a look at runners for the primary yr after her diagnosis. If she by accident did, she would look away and cry.

Just like the estimated 25,000 Americans living with A.L.S., her day by day life is a struggle. An affable extrovert, she often chooses to stay quiet around those that can’t decipher her slurred speech. When she was asked to be a guest on a podcast, she needed to have a friend speak for her. Typing an email can take 45 minutes. Crossing a street in the course of the duration of a crosswalk signal is nearly unattainable.

Recently, when a wheelchair was not waiting for her at an airport gate, Peet headed toward baggage claim along with her walker. She maneuvered slowly, her upper body leaning right, her left foot dragging. She arrived dripping in sweat, exhausted. But these are good problems, Peet said. She knows that someday, she won’t have the ability to walk in any respect.

Riding the trike, she said, is the one time she feels free. She thinks about what her muscles can do relatively than what they’ll’t.

She made the famed Boston Marathon turn — right on Hereford, left onto Boylston — flanked by a bunch of runners who had joined her.

Friends were waiting for Peet on the finish line, and had told nearby policemen about her race. The officers cleared the ultimate quarter-mile of Boylston Street for Peet’s arrival. As she crossed the finish, she grinned wide, each arms raised.

Peet doesn’t know her own life expectancy. But she does know the way she desires to spend her remaining days: raising awareness and money for A.L.S. research (up to now, Team Drea has raised $850,000), writing a memoir, filming a full-length documentary about her journey and racing.

Peet’s final 50-in-50 race (she is going to have accomplished 52 marathons by then) was on Prince of Wales Island, in Alaska, on Saturday.

“I don’t want people to be like, ‘A.L.S. isn’t that bad, she’s out doing marathons,’” Peet said. “I don’t know anyone else like me. But that doesn’t mean that they’re not on the market. I would like people to try to maintain fighting.”

While on her trike, Peet can remember the sensation of running: one foot hitting the bottom, then the opposite, arms swinging backwards and forwards, lungs filling, the regular cadence of breath and body.

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

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