Woman with ALS completes marathons in 50 states | State and Area News

By BROOKE CAIN – The News & Observer

RALEIGH, North Carolina (AP) — When Andrea Peet first set herself the goal of being the first person with ALS to complete a full marathon in all 50 states, even she wasn’t sure to be able to do it.

The task was monumental: She had to complete 50 separate 26.2-mile races on a recumbent tricycle, after being given an estimated life expectancy of five years with a condition that would gradually weaken her muscles year by year.

And that was even before a global pandemic halted marathons — and its progression — for nearly a year.

But on a recent Saturday, on Prince of Wales Island in Alaska, the Raleigh native marked the last US state on her list.

“It’s really hard to put into words,” Peet told The News & Observer in an interview before leaving for Alaska. “I’m really excited. I’m so honored and honored to be able to be at this point. When I started the journey, I’m not sure I really believed I was going to be 50. It was more about say, ‘I’m not going to let ALS and fear of the future stop me from doing what I can do ‘today.’”

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Peet was diagnosed with ALS in 2014, when she was 33. ALS (amyotrophic lateral sclerosis or Lou Gehrig’s disease) is a progressive neurodegenerative disease that attacks cells in the brain and spinal cord, causing muscle weakness and paralysis.

Typically, ALS patients are given a life prognosis three to five years after diagnosis, and only 20% of those diagnosed reach the five-year mark. Most people with ALS become totally paralyzed as they lose the ability to walk, talk, eat, swallow and breathe.

Peet, who lives in Raleigh with her husband, David, and their two cats, Bailey and Tango, overcame these obstacles and used her time to raise awareness of the disease and give hope to those diagnosed. She has also worked with Google and the ALS Therapy Development Institute to help develop voice recognition tools for ALS patients.

The COVID-19 shutdown wasn’t the only setback along the way. Race No. 49 for Peet was supposed to be the Boston Marathon in April. But marathon organizers wouldn’t allow her to run, saying they had no category to accommodate her.

The Boston Marathon has categories for people with various disabilities, including ALS, Peet said. But in the SLA category, you have to run, which she can’t do. In the other categories, participants must use a wheelchair or handcycle, which requires a fair amount of upper body strength and endurance, which Peet does not have.

“They allow people with adaptive equipment to go faster than me and people with disabilities who are slower than me,” Peet said. “I just don’t really get it – I’m not really okay with keeping myself out.

“I had hoped my story would be compelling enough in their drive for inclusion to override their rules, but so far it hasn’t,” Peet said. “When people ride a handcycle or a wheelchair it’s usually because they’re paralyzed in their lower body or they’ve lost one or both legs, but for me my ALS affects my whole body. with weakness so I can’t do a hand bike…. I’ve done 53 marathons with ALS so other races allow.

There were other times when Peet was told she couldn’t compete, but it was because the trails were too narrow or there were too many loops. In these cases, it was not the device used, but the actual course, she said.

Peet had a backup plan for Massachusetts — she had completed the Martha’s Vineyard Marathon in October — but the Boston Marathon is special, and participating in it was important to her.

“There’s nothing quite like the Boston Marathon,” she said. “The atmosphere is amazing and people have been trying for years to get in, but there are also people doing it for charity, for many different causes and motivations.”

Not one to easily accept being told she can’t do something, Peet did what you might expect of her: she still completed the marathon, on her own terms and with his own team.

“I thought about it a lot and said, if I want to do Boston, then I will,” she said.

So Peet rode in Boston the night before the race and completed the same route others would ride the next day, with two friends riding in front of her and her husband in the car. Prolyfyc Run Crew of Charlottesville, Virginia, a group dedicated to cultivating diversity and inclusion, joined the course, growing their group to about 20 people.

As they approached the finish line, the streets were closed for the weekend and a 5k race. Someone had told his story to the police, and they opened the way for him.

“With all of our friends and the people that were there, we had a great crowd and so it was amazing to cross the finish line,” Peet said.

A friend from his college days at Davidson, who lives in the Boston area, saw his story on Instagram and drove over and gave him his medal from a previous Boston Marathon.

“It was really special – the whole day was amazing,” she said.

The terrain of the Prince of Wales Island International Marathon is mountainous and she knew the weather would be cool and a bit rainy, but that didn’t concern Peet. She’s run in bad weather and done hilly marathons before and she knows how to handle it.

Plus, she was so excited about the race – not just for her, but for everyone who helped her along the journey.

Peet had about 50 people in Alaska with her, including a woman with ALS who was diagnosed in April last year.

“She had done a Chicago marathon for 20 years in a row, so she came home after being diagnosed and googled marathon and ALS and my story came up,” Peet said. “So that’s what I hope I can offer people with ALS – that there is hope, that not everyone’s journey is the same.”

Hearing the five-year life expectancy statistic is scary, says Peet, “so I want to show people that it’s possible. And even people who don’t struggle with ALS – everyone is struggling with something – so hopefully I can do what I set out to do, and hopefully I can help people achieve big goals .

Peet’s treatment and therapy plans are pretty much the same as when we spoke to him in 2020.

She still swims and does Pilates every week. Her meds are the same except she completed a 6-month drug trial she was on in 2020. The med wasn’t working for her, she said, because it tightened her muscles, but he had good results overall and it’s moving forward.

Now in her eighth year after diagnosis, people often ask her about her secret. She knows that ALS affects everyone differently and what works for her may not work for everyone.

“I wish I could offer them something more that I know my focus on very low intensity exercise — other than marathons — has made a big difference for me,” she said.

His biggest frustration right now is the worsening effect on his ability to speak.

“My voice is getting worse, so it’s frustrating because I’m raising awareness and raising funds with my voice by telling my story, and I’m a guest speaker,” she said.

Her husband and her neurologist at the Duke ALS Clinic, Dr. Richard Bedlack, were with her in Alaska to help with this part.

“We’re all going to tell the story,” she said.

The 50 for 50 Challenge was launched during the final leg of Peet’s Marathon, a fundraising initiative to raise $50,000 for ALS research as Peet completed his 50th marathon.

As with its other goals, expectations were met and exceeded. Two days before the Alaska race, the Team Drea Foundation, Peet’s foundation that has raised more than $750,000 for the ALS Therapy Development Institute and the Duke ALS Clinic, announced that $85,000 had been raised in part of the 50 for 50 challenge.

Peet hopes they will reach $100,000 so they can donate $50,000 to ALS TDI and $50,000 to Duke.

There’s also a documentary in the works, which was filmed over the past few years as Peet completed his marathons. The documentary “Go On, Be Brave” is raising funds to cover costs associated with production.

Peet told The News & Observer in 2020 that she thought marathons had made a big difference in how she learned to live with ALS. “I really believe it’s helped me maintain my strength, and mentally it gives me purpose,” she said at the time. “It gets me out and I don’t think about how I’m going to die all the time. I’m thinking about the next race and working towards something.

With the 50 marathon goal behind her, Peet’s new goal is to complete a memoir she started five years ago.

“I keep surviving the delay, which is a big problem to have,” she said. “So I’m going to take some time and really write my story. It’s hard for me, obviously, to tell my story, and even though we have a documentary, I want to tell my story in my own way.

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