Another path: After ALS diagnosis, Austin marathoner finishes London race in wheelchair
Austinite Bill Corrigan started running when he was 45 to help fight his high cholesterol. After his first marathon at age 48, he asked himself, "Why did I do that?"
Then he got the marathon fever and was on track to do six of the major world marathons. He ran New York in 2017, Chicago in 2018. Berlin was in 2021. He qualified for the Boston Marathon, but then COVID-19 delayed it, along with his London Marathon bid.
But about 18 months ago, he noticed his toe would hit the ground when he was running and he would trip. When he ran the Berlin Marathon in September 2021, it took him a long time — six hours. "There were people walking faster than me," Corrigan said.
That's when his wife and a friend told him he needed to see a specialist and get an MRI.
On Feb. 2, Corrigan, 62, was diagnosed with amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's disease.
On Oct. 2, Corrigan finished the London Marathon, but unlike in previous marathons, he covered all 26.2 miles in a wheelchair.
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Understanding ALS
ALS is a progressive neuromuscular disease that damages the nerves and causes muscle loss. It affects everyone slightly differently, said Dr. Shailesh Reddy of Austin Neuromuscular Center. Sometimes initial symptoms include difficulty swallowing or breathing, or hand weakness. In Corrigan's case, his weakness has all been in his legs.
ALS "takes all comers," Reddy said. There are people who are diagnosed in their 80s and others in their 30s, he said.
It's a diagnosis of exclusion, meaning a lot of other things are ruled out, and then this diagnosis is given.
"We don't have a definitive biomarker," Reddy said.
The symptoms include speech abnormalities, difficulty swallowing, weakness in the hands or feet, breathing difficulties, not being able to sleep at night because of shortness of breath, losing a lot of weight and muscle twitches.
ALS is progressive and is always fatal, but Reddy said he has seen people live 10 years past diagnosis, while others live for shorter times. It also depends on how long it took them to be diagnosed and whether it is affecting their breathing or swallowing yet.
There are many theories surrounding ALS, and Reddy said it might be individualized.
"Certain processes may be driving the disease in one person" and different ones in another, he said.
That means certain medications being tried might work on some people but not others, he said.
Only about 10% are because of a genetic mutation, Reddy said.
"It's challenging," he said. "We don't know the underlying path of the physiology of the disease."
When someone newly diagnosed with ALS comes in, Reddy tells the person to take a deep breath and avoid searching for information online.
"Some of it may or not be appropriate to their situation," he said. "That scares patients in a disease that is already frightening."
Reddy works on setting up physical and occupational therapies, a nutritionist, a social worker, people who can help patients with whatever assistive devices they need such as a wheelchair or a communication device that will talk for them.
"A lot of ALS care is symptomatic treatment," he said. "There are a handful of FDA-approved modification medications, with a modest effect on survival rates ... none of them are a home run."
More medications are in clinical trials, in which Austin patients can participate.
"Research is going to continue and hopefully that culminates in a cure one day," Reddy said. "Hopefully in five years, we find something that clicks."
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Until that time, Reddy focuses on keeping people as physically able as possible for as long as possible. That means doing physical therapy to keep the muscles from getting fixed in one position, using braces or splints before wheelchairs and making sure there are grab bars in showers.
In the end, the majority of people with ALS end up with a feeding tube and a noninvasive ventilation machine.
The fact that Corrigan is physically active won't make a difference as far as the progression of the disease, Reddy said, but, "it makes a difference in mindset in patients. ... He probably is very good at having the mental fortitude" to get through things.
Taking in the news
When Corrigan received his diagnosis, he was depressed for 10 days, he said. Then he thought, "Why should I change things?" he said. "We don't know how long we're going to be here. People get cancer. All different things happen. Nothing's really changed except there's this other path I'm on. I couldn't be down about it."
He likens being a marathoner with ALS to when he used to climb mountains. "To be safe and come down alive, you have to have plan A and a plan B and none of them might work. Something is going to change when you're on the mountain."
Corrigan had the Boston Marathon coming up in April. He knew he wouldn't be able to run it. Instead, he walked 4 miles of it using walking sticks.
He knew he also had the London Marathon on the schedule for October. So he did what any marathoner does. He started training — this time in a wheelchair.
It was like learning any new sport; there's a learning curve, he said.
"The hardest thing about running is putting your shoes on and getting out the door," he said. "This is getting to know the equipment."
He borrowed a racing wheelchair and started practicing on a local track three times a week, but that got boring. Then he found the Walnut Creek Trail, the new part of the Butler Hike and Bike Trail east of Interstate 35 and even the Veloway.
He would even join his running group but bring his wheelchair.
"The training was freedom," he said. "I was sitting in a chair, rolling on the road and going fast. I didn't have to worry about my weak legs at all."
He would think about the goals he had and the training for the day instead of the things that have become hard, such as putting on his clothes.
He compares himself to those toys you sometimes see on desks that are a bird that bobs its head up and down.
"I don't have the personality to be bummed down," he said. "That's just how I'm made."
At first he was jealous of all the runners he saw, but being able to keep up with them in a wheelchair has helped.
"Now I'm just glad to see people out and running about. I do miss it," he said.
He thinks about gratitude regularly.
"When it's really hard and bumming me out, if I think about all the nice people around, it has a calming effect," he said.
ALS has come with the challenge of accepting help. He was recently on the Veloway, and when he got to a big hill, a cyclist asked if he wanted some help. He said no but then realized the cyclist also was struggling to climb it.
"It was teamwork, but we got up that steep hill," he said.
He's getting better about asking people in the grocery store to reach for something for him on a top shelf, too.
"It's been a learning process for me," he said.
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Prepping for London and the future
The London Marathon, though, came with a special challenge. He had qualified as a runner, not as a wheelchair athlete. That meant he couldn't use the racing wheelchair. He would have to use his regular wheelchair, which he is now using daily.
"I could tell by May that walking was going to go away from me," he said. "You've got to get ahead of things."
His regular wheelchair is custom-built to fit him but didn't arrive until September.
"I was really worried I wasn't going to get it in time," he said.
Another thing Corrigan has gotten ahead of is recording his voice for the day when he can no longer speak. Then when he uses an assistive device to communicate, it will still sound like him and not the robotic voice that the late scientist Stephen Hawking used.
"Some of the stuff is slow," he said of the symptoms of ALS. "You don't know it until it's already started. That's one of the hard things about it."
He has now retired as an instructional designer for online course material. This summer, he also had his bathroom remodeled to be accessible.
For London, he worried about whether it would rain, but plan B included having a trash bag ready to cover the expensive seat he sits on. He worried if he would have the strength to finish the race and what his wheelchair would do on London's roads.
All the planning paid off.
"It went great," Corrigan said.
It was supposed to rain, but the weather was beautiful. He finished all 26.2 miles with two of his children there to watch.
Afterward, he said he felt "pretty darn good. My left forearm is sure sore. It was really different to race in the everyday wheelchair vs. the racing chair I trained on all summer."
He met five wheelchair racers there "who passed me on the course," and he learned a lot of tricks from them.
Now he is planning to do the Toyko Marathon in a wheelchair in March and then the Boston Marathon — this time using a hand cycle and this time finishing it.
"I'm not a hero," he said. He's just trying to come to grips with what is happening.
"I'm trying to do something I really like to do," he said.
Walk to Defeat ALS
When: 9 a.m. Saturday
Where: Mueller Lake Park, 4550 Mueller Blvd
More information: alstexas.org
This article originally appeared on Austin American-Statesman: After ALS diagnosis, Austin marathoner finishes London race in wheelchair
