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Living Well with ALS: Colin Meagher

Colin Meagher’s story is one of adventure. A former photographer by trade, Colin also had a passion for snowboarding, climbing, and other high-adrenaline outdoor activities. He attends the Hood River ALS Support Group facilitated by Amber Smith, sharing, “I enjoy the support group. There are people who really understand me and what I’m going through. It’s reassuring, knowing that I’m able to talk openly about ALS.” Colin is also an advocate in the fight against ALS and fundraised remotely for the ALS Northwest Beers and Gears ALS Ride that takes place annually in July.

For years, Colin was a professional mountain bike photographer for the Union Cycliste Internationale (UCI) Mountain Bike World Series. He moved to Portland in 2015, and married Nikki Rohan – one of the mountain bike models he used to photograph – at Death Valley National Park a few years later. Colin had always wanted to be a father, and he recently got that chance: Nikki and he had a baby boy two years ago, carrying on Colin’s remarkable legacy. Nikki also has two children from a previous partner, both of whom Colin considers to be family.

Colin’s Path to an ALS Diagnosis 

When not behind a camera, Colin was himself a passionate mountain biker. He first noticed something unusual after a muscular injury caused by a fall off his bike. The muscle was severed, and about a week later, he noticed muscle fasciculations that eventually spread throughout his whole body. He saw a neurologist for an EMG to explain these fasciculations, but at first, the results were inconclusive.

Two years later, Colin realized he had lost a significant amount of muscle. He pursued a more conclusive diagnosis, and after a few blood tests, a CAT scan, a spinal tap, and two MRI tests, Colin was diagnosed with ALS. 

Photo by Colin Meagher

“Do one thing every day that scares you. That’s what will make you feel alive.”

Reflections on a Life with ALS 

Colin describes himself as “fiercely independent,” determined to live a full life even with the challenges of this disease. He admits he doesn’t feel as “selfish” as he used to be, when performing at a high level was his priority. He shared, “ALS forced me to slow down more and realize how important family and friends are in one’s life.” He’s open about the need for advance planning, ensuring his loved ones know his wishes while he is capable of sharing them. As his physical function has declined, he also candidly recommends to “get a bidet.”

For support, Colin leans on ALS Northwest along with his family and mountain bike community. For others living with ALS, Colin advises, “Spend the time doing what’s going to make you feel fulfilled… do the things that make you smile.” Colin isn’t one to embrace complacency, so he further recommends, “Do one thing every day that scares you. That’s what will make you feel alive.” (Image: Colin at the Hood River ALS Support Group.)

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