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‘We can take a bite out of MS’: Walk MS set for today at Rec Center

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BEMIDJI — It took Ann Hayes three years and a seven-day hospital stay to accept her disease.

Temporarily paralyzed because of multiple sclerosis, Hayes had to call her husband and son from work and be carried from her office to the car to get the hospital.

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Recovering from an infection, she spent a week in the hospital, praying her inability to use her legs or arms was temporary.

“I spent seven days in there, recuperating and hoping to God that this wasn’t a permanent situation,” she said. “That’s when I had a sort of ‘Come to Jesus’ meeting, to be honest.”

Recognizing then that her situation could be much worse, Hayes stopped avoiding the fact she had MS, an unpredictable, often disabling disease of the central nervous system.

But do not mistake her acceptance for giving up.

Hayes, former owner of Brigid’s Cross Irish Pub, takes medication for her pain and continues to work her body — through swimming, t’ai chi chih, stretching, massage and chiropractic visits — to address the spasticity that comes with MS.

She also is researching alternative therapies, such as diet, in search of relief.

“You do look for those things; you look for those alternatives when you get to the point where I am or beyond,” Hayes said. “You start wondering, ‘Have I missed something?’”

Hayes is this year’s ambassador for the local Walk MS, a mile walk that raises money for multiple sclerosis.

The walk, to be held today at the Gillette Recreation-Fitness Center, is expected to draw about 200 people in hopes of raising $25,000 for the MS Society, said Kevin Jackson, co-chair of the this year’s event.

The walk, in addition to raising money, provides a platform to raise awareness about MS, Jackson said, in an email to the Pioneer.

“The bizarre thing about MS is that the farther north you go, the more often it occurs,” he said. “People in Minneapolis are more likely to get it than people in St. Louis, for example. And people in Bemidji are more likely to get it than people in Minneapolis.”

Research into the disease is critical because MS is mysterious, Jackson said.

“Although we know what MS does, we don’t know what causes it,” he said. “So far, all medications have just been to slow down disease progression and (hopefully) blunt the effects of the disease. Researchers are hoping someday to pinpoint what causes this disease.”

All proceeds from the walk will go the MS Society to support research and programs to benefit those with MS.

In addition to funding research, the MS Society promotes advocacy and education. It helps connect people with MS with local services to keep them in their homes longer and provides support for caregivers.

For example, Hayes said, MS can lead to heat sensitivity, so the society helps subsidize costs for cooling vests, enabling those with MS to still enjoy the outdoors in the summertime.

Hayes, who sold Brigid’s Cross Irish Pub last summer after eight years of ownership, said the society helped fund a stair lift for her at the pub so she could get to and from her downstairs office, allowing her to continue working a few years longer.

“We have to live day-to-day,” Hayes said. “The MS Society is there to help us stay active, to keep us living our lives.

“MS can destroy you, but if we can keep people connected to their worlds, we can take a bite out of MS, too.”

‘in denial for a long time’

There are four types of MS. Hayes is among the 10 percent of people with MS who have primary-progressive MS, characterized by slowly worsening neurologic function with no distinct relapses or remissions.

Hayes, a concert violinist with the Bemidji Symphony Orchestra, first became concerned around 2003 when she noticed numbness in her fingertips.

Around that time, Hayes, who ran 10-Ks and half-marathons, wasn’t performing her runs as well as she’d expected.

“I thought the reason I wasn’t able to pick up my feet was because I wasn’t exercising enough effectively,” she said.

So, she began running shorter distances, then decreasing to speed-walking and then simply walking.

“When it got to the point I would go out walking and couldn’t get to the end of the block without feeling like I was going to fall over … I knew then it was more than me being out of shape,” she said.

Eventually, following a barrage of tests, including five for Lyme disease, the diagnosis came in.

Yet Hayes, entering her third year as owner of Brigid’s — “the absolute best job in the world” — chose to ignore it.

“I was going to be the miracle child,” she said. “I couldn’t even say MS. It was just not a reality in my life.”

In time, after her hospital stay in 2010, she faced reality.

“I went through the stages of grief,” Hayes said. “You have to be really careful in this disease to not look back, because looking back, there’s heartache, especially when you look back in regard to your future.

“I tell you, I was in denial for a long time and I was mad. I’m still pissed off. But I’m not in denial anymore.”

Her MS, Hayes said, has taught her to ask for help and to lean on other people.

“Everybody has to be able to open themselves up and become dependent on somebody,” said Hayes, who describes herself as a former do-it-herselfer. “That’s difficult sometimes, to realize that you’re losing independence because you can’t get the big fat jar off the top shelf anymore.”

Her MS also made her a better employer, she said, noting that she learned to delegate more work and rely on other people.

Hayes, the mother of three grown sons and a grandmother twice over, also said she is fortunate that she has support at home. In August, she and her husband, Mike, will mark their 33rd anniversary.

“That’s something, I think, that is a real human need … to open yourself up and admit that you need somebody else,” Hayes said.

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