Sandy Helbeque has been living with multiple sclerosis for over 30 years.
Helbeque, 68, makes sure to attend the Scotiabank MS Walk every year and this year was no different. Except this was the first time she needed a walker, as her disease has progressed to the point that it’s affecting her mobility.
Helbeque was joined by her husband Dennis, as well as her children, grandchildren and her friends Mary Gris and Janice Ferraro. She was only one of the participants in the fundraiser, which started in Lakeside Park and continued for either 3 or 5 kilometres.
“Here I am again,” said Helbeque, as she pushed her walker down the gravel trail beside the soccer fields. When asked whether she would take the longer or shorter route, she said she would go “as far as we can manage” while her children and grandchildren zoomed ahead.
Helbeque was originally diagnosed when she was in her 30s, but she said she’s been fortunate to have the care and attention of her husband Dennis and she’s happy that her case is relatively mild. However, she said, one of the main struggles she experiences is chronic fatigue.
“When I get out of bed, I’m usually fine until noon. Then I sit in a chair and drop off to sleep. I don’t seem to have the same get up and go,” she said.
Lonnie Facchina, the community services coordinator of the West Kootenay Chapter of the MS Society, said the difference between fatigue experienced by the regular population is dwarfed by the fatigue experienced by those suffering from MS.
“It’s like a fire cracker compared to an atomic bomb,” she said.
Facchina said MS can manifest in a number of different ways, Many people have trouble breathing, experience temporary loss of eyesight and suffer from bowel and bladder issues as well as chronic pain. They often have numbness in their extremities, which can cause clumsy mistakes and accidents.
“It’s a truly awful disease,” she said. “And, of course, there’s no cure.”
But Helbeque is intent on keeping a positive mindset. She said she would tell anyone newly diagnosed with MS that there’s always hope.
“When you first get diagnosed, you feel like the world’s coming to an end. I had this vision of a wheelchair. But here I am, thirty some years later and I’m still going. So there’s hope.”
Gris told the Star that one of the hardest parts about living with MS for Helbeque is that the disease isn’t readily apparent to passersby.
“When someone has an illness and you can’t see it from the outside initially, it’s hard. They can’t understand,” she said.
Gris makes a point to help Helbeque and her husband by routinely taking her friend out to lunch and helping out with driving chores whenever possible.
“I don’t want to see her left out. We want to include her as much as possible.”
Another resource for Helbeque is the Iyengar yoga classes offered by Ferraro in Castlegar. The class is free for those with MS, as well as their caregivers. Ferraro said the focus is on “restorative” yoga and on healing. She does a lot of work with her students’ breathing.
“If your breathing isn’t good, then nothing’s good,” she said.
Ferraro has a number of events throughout the year, including picnics, Christmas parties and coffee get-togethers. She said fellowship is one of the most important things for her students, because they can spend time with people who have been through what they’re going through.
“We have a lot of parties,” she said.
Facchina quoted a former chapter head of the MS Society, Colin Seed, to illustrate the public struggles many with MS go through: “If you see me stumbling down the street at 9 a.m., I may not be drunk.”
Reached by phone on Monday morning, Facchina said the Sunday morning event was a success. They had raised $23,000 and were expecting more to come in.
“The generosity from our regional stores blows my mind,” she said. “Especially Baker Street.”
“They’re being hit up every day by a variety of charities, sports teams, you name it. And they don’t let us down. There’s no other community that supports us like Nelson.”
Helbeque was concerned that there seemed to be fewer walkers out this year than years previous, but was nonetheless floored by the support. Though the financial contributions are hugely helpful, her primary assets are the people around her.
“You have to go step by step,” she said.