Defying MS, one mile at a time

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Karen's family have supported her participation in races for years, and continue to partner with her as she makes a difference in the future of multiple sclerosis (MS) and her personal MS journey (Pictured here at the 2024 Walk MS: Carlsbad event).

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Karen makes a photo stop at the 100-mile Bike MS: LA Coastal Challenge.

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Karen teamed up on a tandem bike while on a biking trip through Bike the US for MS.

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Through the dozens of fundraising rides that Karen has participated in, she has raised over $50,000 for the National MS Society.

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At the Bike MS: LA Coastal Challenge event, Karen points to her personal profile sign.

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Karen (left) and her Sharp HealthCare speech therapist Vickie Va (3rd from the left) wave to the crowd at the 2024 Walk MS: Carlsbad event.

Karen Matingou’s journey with multiple sclerosis (MS) is nothing short of extraordinary. Diagnosed in 2018 at age 48, Karen immediately decided she wasn’t going to let the disease define her.

Two weeks after her diagnosis, she registered for Bike MS: Bay to Bay, a 100-mile trek from Irvine to San Diego. She didn’t own a bike and hadn’t ridden one in decades, but Karen was set on proving to the universe — and to herself — that MS wouldn’t hold her back.

This first cycling event was just the beginning for Karen. Since then, she has taken part in more than a dozen fundraising rides across the country, raising over $50,000 for the National MS Society.

Living with MS has been challenging, but Karen shows no signs of slowing down. Finding new ways to ride, receiving support from her friends and family, and undergoing specialized rehabilitation therapies at Sharp Rees-Stealy have helped keep her going.

Path to diagnosis

In April 2017, Karen attended Walk MS: San Diego at Liberty Station, an annual event to raise funds for MS research. Her friend had invited her, and she took it as an opportunity to get exercise and enjoy fresh air.

At the time, Karen didn’t know much about multiple sclerosis, a chronic disease that affects the central nervous system and doesn’t yet have a cure. “What is MS anyway?” she wondered as she looked around at the hundreds of people and families who gathered at the event.

When she learned the symptoms and warning signs of MS, she thought it sounded eerily similar to what she was experiencing: balance issues, tingling and numbness in her extremities, vision problems and an electrical shock sensation that radiated from her neck down her arms when she lowered her chin to her chest.

Finding acceptance and pushing forward

Later that year, Karen saw a neurologist and was diagnosed with relapsing-remitting multiple sclerosis. People with this type of MS have periods of worsening symptoms and periods of remission.

“As I digested the news, I went through the full cycle of grief: denial, anger, fear, depression and finally acceptance,” Karen says. “I let myself feel my feelings, and then — like I do with any setback — I moved forward with a plan, with determination, with resolve and with hope.”

A short time later, she got a bike, joined a training group and completed her first two-day, 100-mile ride.

Bumps in the road

A few years and hundreds of miles later, Karen had completed a long list of cycling events, including the Tour de Trek and Tour de Palm Springs century (100-mile) rides. She was consistently a top fundraiser for Bike MS each year and was named Most Inspirational Rider in 2019.

But unpredictability is one of the hallmarks of MS and in 2022, Karen’s symptoms got worse. She was forced off her single, two-wheeled bike and adapted to riding a two-person tandem bike or a recumbent trike. She started experiencing right-side weakness, fine motor skills issues, increased balance challenges and issues with her speech.

“When I get fatigued after a bike ride, I start slurring my speech,” Karen explains. “It almost sounds like I’ve had too many drinks.”

It made her feel self-conscious and affected her confidence. Then, as part of her rehabilitation plan, Karen began speech therapy with Vickie Va, a speech pathologist at Sharp Rees-Stealy Medical Centers. Karen says Va made her feel comfortable and empowered her with exercises she could practice at home.

“She gave me practical tools that were extremely helpful,” Karen says. “One of the things I appreciated most about working with her is her sense of humor. She taught me balance through humor and how to make light of things, despite life’s challenges.”

A circle of support

In April, Karen became the first-ever honoree at the Walk MS: Carlsbad event. “I was grateful to have Vickie join me onstage that day as part of my village of support,” she says.

Va was thrilled to reunite with Karen after several months. She says she was astounded when she spoke with Karen at the MS walk

“Not only had she maintained her speech, but it had improved,” Va says. “It was such an honor to share a stage with a woman who has given so much of herself to the cause, and it was amazing to watch her being honored for being herself.”

An unstoppable force

On June 2, Karen completed the 100-mile Bike MS: LA Coastal Challenge. She’s preparing for three more cycling events in 2024. Staying physically active, maintaining a positive outlook and accepting support from her “village” has made all the difference.

“MS is the row that has been given to me, my cross to bear, or however you want to say it,” Karen says. “But I have been blessed with many helpers along the way to encourage me, lift me up and help shoulder the burden.”

This summer, Karen will be participating in a clinical trial to help evaluate a new treatment for MS. She plans to continue her campaign against the disease and holds out hope that a cure will be found.

“As a good friend and fellow MS warrior once said to me, ‘Sometimes we are the wind, and sometimes we are the sail,’” says Karen. “In my journey with MS, I have been both. I am both.”

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