Victoria swimmer with MS to tackle Cowichan Lake marathon

A Victoria woman with multiple sclerosis plans to swim Cowichan Lake in both directions, a marathon, non-stop swim of 70 kilometres.

Susan Simmons, 49, hopes to send the message to others that MS doesn’t have to ruin your life, that you can still have fun and achieve amazing things in spite of it.

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“Life does not end with MS,” she said, urging others who have a similar diagnosis to “keep living and have a fun life.”

Simmons, who starts her marathon Friday afternoon, was diagnosed at about age 30, after a couple of bouts of blindness in one eye that lasted up to three months.

MS often strikes adults between the ages of 20 and 40. About 100,000 Canadians have been diagnosed with the disease, which can take various forms. Symptoms can include vision problems, numbness or weakness in one or more limbs and lack of co-ordination.

MS is an autoimmune disease of the central nervous system. The disease attacks the myelin, the protective covering of nerves.

Simmons wasn’t particularly athletic when she was diagnosed. The blindness on the second occasion was accompanied by excruciating pain. “It was as though I had a knife piercing from my head outside my eye.”

For the first 10 years, Simmons went into denial about having MS. She didn’t want to take steroids or similar drug therapies.

She then got more symptoms when she was tired or stressed, including an extreme sensitivity to heat in her arms and legs.

“It’s part of why I swim, because I can stay cool,” she said.

When the symptom flares up, she gets tingling and numbness in her arms and legs.

“It’s kind of like your arms and legs are always asleep.”

This is her main worry about the marathon swim — if the numbness affects her limbs, she will have to stop and get out of the water.

Another symptom feels like someone is running a zipper up her spine. Her propensity for dropping plates has got her out of dishwashing duty, she jokes.

The initial symptoms have calmed down and Simmons is able to work full-time for the province in information technology.

While MS can put many people into wheelchairs before it goes into remission, Simmons feels lucky that she has retained her mobility.

She also lost 60 to 80 pounds by swimming, which has improved her health.

“My belief is that, because I’ve become so healthy through fitness, I’ve put the symptoms at bay,” Simmons said. “I have a lot fewer problems than I would have had if I hadn’t started swimming.”

She started by swimming 10 to 20 lengths of a 25-metre pool, followed by a long nap of two to three hours. Simmons built up enough endurance to join a masters swim club.

In July, she swam the English Channel as part of a relay.

Her greatest challenge so far is the Lake Cowichan circuit this weekend.

“I kept building and building the endurance,” she said.

Simmons plans to start her swim at 2 p.m. Friday, then swim overnight “as a new challenge” and finish about 28 hours later.

“I want to see how far I can go,” she said.

Stressing the body can trigger an MS attack, so Simmons has learned how to manage her symptoms while exercising.

“My neurologist has said, ‘Don’t poke the bear,’ ” she said. “He’s fine with me doing this stuff but says don’t push it too far.”

She’ll have a friend and other supporting swimmers joining her for parts of the Cowichan Lake swim, which starts from Lakeview Park.

smcculloch@timescolonist.com

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