His race against ALS: 50 marathons in 50 states

Andrea Pitt recently ran the 11th mile of the 2020 Mississippi Blues Marathon when she felt a sudden jolt. He had already drilled a few holes in the course, but saw it too late. His sleeping trick went off course. As soon as he fixed the wheels, he realized he had a bigger problem: he could not play with the pedals.

She went to the side of the road and called her husband, David.

“I can not move the pedals,” he told her. He could not see what was wrong, but realized it was a trick transfer system. David was in the center of Jackson, four miles away, and all roads were closed for racing. “I’m on my way,” he said. He started jogging.

While he was waiting, Pete admitted that he was unlikely to finish the race. The Mississippi Marathon was the 16th in her quest to complete one in each state, all of which battled amyotrophic lateral sclerosis – a progressive disease more commonly known as Lou Gehrig’s disease that deprives muscles of the ability to move voluntarily, affecting actions such as chewing. . And conversation. “We will be back again,” he thought.

Half an hour later David appeared with a large backpack. He removed the phone and found a YouTube video that gave instructions on how to fix the trick chain. As soon as they were re-assembled, he looked at Pete, the face of the bike fat.

“You will go well,” he said.

He could pedal, only now, he could not move the gear. After 9 a.m. they were to be in Little Rock, Ark, by 6 p.m., to pick up the pack for the next morning marathon. The journey lasted more than four hours and they also needed to correct his trick.

He stepped forward with the pedals. The pain shifted in the rectangle to the steeper sections when he wanted to change gears. Had to stop at several points to relax. He wanted his legs to continue to move, even when his left knee was aching. He finished the marathon in four hours and 59 minutes.

He and David repaired at the nearest bike shop before heading to Arkansas. They arrived at the Little Rock Marathon package pickup just minutes before it closed.

Pete laughed to himself. It was life with ALS. He always spent hours racing.

Pete, 41, did not start running until he was 29 years old. His first jog – on the treadmill – was only 15 minutes. But he found it exciting. He registered for several races and added exercise to cycling and swimming for triathlon training.

In early 2013, Pete noticed that his right index finger could not fully extend while swimming. He began to struggle to put on bicycle gloves and sometimes fell inexplicably. David noticed that his speech was becoming difficult to understand.

In November of that year, he ran a 7.9-mile relay leg at the Oaks City Marathon in Raleigh, NC, but his body did not cooperate. He had to go through all the sections of the descent to avoid falling.

It was the last foot race he went through.

Pete thought his symptoms were due to some kind of injury, so he scheduled an appointment with a physiotherapist. Two months later he visited a neurologist at Georgetown University who conducted various screenings. He initially ruled out ALS

Over the next few months, doctors and specialists were unable to make a diagnosis. Pitt’s physical condition deteriorated. He started using a walking stick, then two sticks and a walking stick.

In August 2014, Johns Hopkins’s neurologist confirmed what he and David suspected: Pete had ALS in a person with a life expectancy of two to five years and there was no cure. He was 33 years old.

Pete was frustrated that he had spent about a year of that life span trying to figure out what was wrong. Now he had one thought: “I have no time to lose.”

A few months earlier, Pete and a friend, Julie Wessner, had registered for the Autumn Sprint Triathlon. He could still swim, albeit slowly, and he could help. But because he could no longer balance on the bike, he called Wessner to cancel. Instead, Wessner asked if he looked at the lying trick. Pet bought one the following weekend.

They would do the race together. During the jog, Pete used two trekking poles for balance. The toes were bent, the feet were bent, and the knees were locked at each step. Wessner held her arm the whole time. They were the last two finals to be greeted by a crowd of spectators who waited for almost an hour for the duo to rejoice.

“It changed everything,” Pitt said. He described the atmosphere of the race as “a laser full of the finest things in humanity, aimed directly at me.”

He decided to continue racing until his body allowed it. He set up daily exercises – pool workouts, Pilates exercises, weightlifting and tricks – to stay active.

In October 2016, he started his own non-profit organization, the Team Drea Foundation, to raise awareness and funding for ALS research.

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

With this he realized that he was tired of waiting to kill the disease. So Pete came up with the biggest, scariest challenge he could have tried: to become the first person with ALS to complete 50 marathons in 50 states.

Pete was not sure he would live long enough to finish. And David was concerned about his physical well-being: would this level of activity – both racing and traveling – accelerate his symptoms?

“I do not know how much time is left,” he said. “I have to count.”

Whether or not Pete should be in the race at all is a question that doctors and ALS researchers have not yet concluded.

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

Dr. Fernando Vieira, chief executive and chief scientific officer of the ALS Therapy Development Institute, who monitored Pete’s progress as he worked with the institute, called him “extremely distinguished.”

“I do not know anyone else in the ALS community who can go on an eight-year journey where he is still doing these marathons,” he said.

In early March 2020, Pete completed 17 marathons in 17 states with the help of rotating actors from family and friends. He and David are scheduled to fly for the 18th Marathon in California on March 20, 2020. But a pandemic invaded and the races were abruptly postponed, and then canceled altogether.

As April grew into May, from May to June, Pete was restless. Every day he spun his trick into a dead end. In June 2020, he completed the Tri-State Trek, a 270-mile race that took place virtually instead of his usual route from Boston to Greenwich, Con.

When several marathons reopened in August, Pete discovered a series of three races in Idaho, Utah and Wyoming that were scheduled for three consecutive days. He and David packed their car and drove west from their home in a rally.

By the end of 2020, he was halfway to his goal.

After setting a goal in his 50s, Pete dreamed of running the Boston Marathon.

But he was denied entry because of the official rules of the Handcycle Division, which forbids his type of trick.

The only way Pete could officially enter was if someone put him in a wheelchair. He had decided to run his own race in Boston.

So the day before the famous race, he and David loaded their car and drove to the starting line in Hopkinson, Massa. The 26.2-mile course marked the preparation for the next morning, but the roads were still open. Three friends were riding bicycles with Pete, and another was shining behind them with car lights.

Pete passed the first tubes in the quiet of the morning. The air was clean and cool; As the sun began to rise, joggers and bikers struck him with a wave or a fist. Pete replied or smiled.

For the first year after diagnosis, Pete could not see the runners. If he accidentally behaved, he would look away and cry.

Like the approximately 25,000 Americans with ALS, his daily life is a struggle. A beloved extrovert, he often chooses to remain silent around those who fail to decipher his vague speech. When he was asked to be a guest on a podcast, he had to tell a friend about it. E-mail Typing mail can take up to 45 minutes. Crossing the street is almost impossible during the duration of the crossing signal.

Recently, when a wheelchair was not waiting for him at the airport gate, Pete went with his pedestrian to sell luggage. He maneuvered slowly, his upper body bent to the right, his left leg dragging. Sweat dripped down, exhausted. But those are good problems, Pete said. He knows that someday, he will not be able to walk at all.

Walking on the trick, he said, is the only time he feels free. He thinks about what muscles he has Can do more than what they can not.

He ran the famous Boston Marathon – right here at Hereford, left at Boyleston – next to a group of runners who joined him.

Friends waited for Pete at the finish line and told nearby police about his race. Officers cleared the last quarter of Boyleston Street for Mill Pitt to arrive. When he crossed the finish line, he smiled broadly, raising both hands.

Pete does not know the length of his own life. But he knows how to spend the rest of his days: raising awareness and money for ALS research (to date, Team Drea has raised $ 850,000), writing memoirs, making a full-length documentary about his travels and racing.

Pete’s last race in the 50’s 50 (then he finished 52 marathons) will take place on Saturday on Prince Island of Wales, Alaska.

“I do not want people to be like that ALS is not so bad, it runs a marathon,” Pitt said. “I do not know anyone else like me. But that does not mean they are not there. I want the people to continue fighting. “

While on the trick, Pete remembers feeling jogging: one foot hitting the ground, then the other, hands moving back and forth, lungs filling, constant pace of breathing and body.

“I’m a runner,” he tells himself as he pedals.

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