When Susan Simmons was diagnosed with multiple sclerosis she was told not to exercise.
That’s because until recently the medical system told most people with MS to hold off exercising, and for good reason. Exercise heats the body and overheating is a known trigger for MS symptoms.
But new knowledge is changing the approach to dealing with MS.
Simmons, for example, was once confined to the couch. She was 80 pounds heavier and suffered temporary blindness, up to two months at a time.
Exercise, and her will to stick with it, has brought her back to a functioning status beyond that of most 48-year-olds.
She’s currently preparing for her biggest open-water swimming achievement yet, as she attempts to conquer the length of Lake Cowichan on July 20. It’s 34 kilometres from Heather Campsite to the Town of Lake Cowichan. 
In fact if it wasn’t for the potentially debilitating disease, the James Bay resident may not have become the ultra-distance swimmer that she is. After 12 years with the disease, and “a lot” of medically prescribed drugs, Simmons said her health was clearly headed in a downward spiral.
“I started exercising when I was 40 because I knew something had to happen, or I was going to end up in a wheelchair,” she said.
As a youth Simmons loved swimming, and the temperature of the pool matched with the knowledge she needed to keep her body cool.
“At first it would be a few laps in the pool followed by a two- to three-hour nap. It got better and better.”
To prepare for Lake Cowichan, Simmons has branched from her Victoria Masters swim group at Crystal Pool and joined three more, the Tyee Aquatic Club, Mercury Rising Triathlon and YMCA Victoria.
“Masters swimming clubs don’t do the kind of kilometres I need so I’ve had to find more. It’s not much fun doing 50 kilometres per week in the pool by yourself.”
Even during her taper this week, Simmons is swimming a total of 30 km.
Through the years there have been setbacks, but you won’t hear any complaining from Simmons. A (mostly) raw food diet to go with the heavy swimming regimen has changed her mindset. She’s a model for others with MS.
Her blog, MSathlete.org, is accessed worldwide.
“I get emails from out-of-country, ones that really move me, people who say, ‘I used to be a runner or swimmer and now I’m back at it since being diagnosed,’” she says.
“What really moves me are emails that say, ‘You’ve inspired and motivated me to get fit for a half-marathon.’ I live for that.”
Others who contact her are still in the early stages of exercising.
“They need a three hour nap after 10 laps in the pool, and that’s a thrill too because I’ve been there.”
Some even come out to her in private, out-of-country athletes who are hiding the diagnosis.
Simmons’ current neurologist is fairly new to her and is happy she’s exercising, she says. “I think the MS community has realized (the importance of exercise) and more are doing it.”
Simmons won’t be alone for the Lake Cowichan swim. Swimming alongside her is Alex Cape, a 34-year-old Canadian Forces army medic and member of the Vic Masters club.
They’ll be escorted by a support crew of friends and family in boats, and are inviting swimmers to jump in for a stint along the way.
If Simmons completes it without incurring any serious health hazards, such as hallucinating or suffering hypothermia, she’ll strongly consider attempting the English Channel (charmingly, the distance from Dover to Calais also 34 km).
As a swimming purist, Simmons won’t wear a wetsuit. It offers buoyancy and is not in accordance with the Channel Swimming Association guidelines. Cowichan will be cool, but not as cold as the Channel. However the freshwater will be less buoyant than the ocean.
The swim is estimated to take 10 to 11 hours.
Two years ago Simmons swam with an all-women’s relay team across the Strait of Georgia, 34 km from Sechelt to Nanaimo (Simmons’ estimates her contribution at around eight to 10 km).
Last year Simmons completed the Vancouver Open Water Swim Association’s Bay Challenge, a 10-km swim across the Burrard Inlet from West Vancouver to Kitsilano Beach.
“I thought I was hallucinating in the Burrard Inlet when I saw a massive animal beside me. Turns out it was a grey whale.”
In it for the long haul
- Not everyone has the opportunity to exercise against MS as it’s more progressive for some than others.
- Simmons is a five-time participant and co-organizer of the HtO Thetis Lake Swim for MS. The July 28 fundraiser has several distances, 800-metre, 1.5 km, three and five km distances.
- The 1.5 and 3 km Thetis Lake swims also act as Masters Provincial Championship distances.
- Fifty percent of the money raised will go towards a cure for MS and 50 per cent will help fund a fitness program for people with MS in the community.
- In addition to her four masters swim clubs Simmons is also part of an unofficial Sunday morning club for MS swimmers, a quiet success story of half a dozen people conquering the disease. Some are walking again after being wheelchair bound.