At roughly 40 years of age, Jan Staebell had so many odd symptoms she thought she was crazy.
Staebell often had no sense of where she was putting her feet as she walked. Her legs would feel heavy as though she was dragging them through quicksand. As a result, she has had many broken baby toes because she wasn’t sure where her feet were landing on the ground. She also found that if she stood still her balance was off or her legs would become numb.
She didn’t just have problems with her body, but had cognitive issues as well.
Through neuro-psych testing, Staebell discovered she had a great vocabulary, but was unable to grasp the words she knew in conversation. She also had trouble with facial recognition.
In one terrifying incident, she suffered from optic neuritis. All of the sudden her vision became blurred in her left eye where it felt like someone had punched her. She could see lines and shadows, but couldn’t recognize anybody. She was legally blind in that eye for six to 12 weeks.
That happened another two times in her left eye before she decided to get help. She had been to a neurologist before who was unable to say what was wrong with her. Eventually, she was diagnosed with multiple sclerosis (MS).
“Like many people, I was actually relieved. You’re wondering ‘Am I crazy? Am I imagining all these things’? And you’re not getting what you want from a doctor to say you’re labelled as this,” said the now 63-year-old. “While there’s no cure, but there’s other things I can do as far as medication or exercise. Then you know what you’re dealing with . . . I knew something wasn’t right, something’s different.”
Searching for answers, Staebell often found herself at the MS Society of Canada’s Victoria branch, where she would read about the disease from books and pamphlets. After her diagnosis she continued to frequent the clinic, a support group, where people with the disease could talk about ways to deal with it.
Over the years, Staebell continued to give back to the community, fundraising close to $200,000 with the support group for the society.
Some of the money they raised was given back to them, which they used to help start an exercise program for people with MS. They also purchased tickets for Cirque du Soleil shows for members who couldn’t afford to go. It became a home away from home for Staebell.
However, now, the MS Society of Canada has decided to downsize its current North Park clinic. According to Tania Vrionis, president of the B.C. and Yukon division with the society, the board of directors has decided to sell the building on North Park Street and move the clinic to a smaller location, that should be determined by the end of the year.
“The operating costs associated with owning a building increases year over year, so we need a more efficient and effective base for our operations,” Vrionis said, adding she anticipates it will be a smaller space compared to the roughly 14,700-square-foot building now. “We want to minimize cost and space, but at the same time, ensuring we’re able to deliver effective services.”
The physiotherapy program, which serves roughly 80 to 90 people, will be cut in the move.
The society is also in talks to utilize space from local community groups to help run some MS programs. Extra funds from the downsize will be used to fund research programs.
It’s a move that has sparked outrage in the local MS community.
Staebell is worried the move will only cause more people with MS to stay at home.
“It’s taking away that physical thing, that building is taking away a safe home. Like a safe home for battered women, but for patients with MS who go to the centre everyday,” Staebell said.
“If it wasn’t for the centre and who I met through the centre, I honestly don’t know if I’d be here today. People will stay home, they won’t get out, they’ll get more depressed. I don’t even want to think of what can happen to those people.”
James Bay resident Susan Simmons, who also has MS, was shocked and appalled to hear about the society’s decision, adding the nature of the programs will change dramatically.
“The type of conversations that happens during those programs ceases to exist. In the art program, people paint and talk about how to manage their health. You cannot do that when you go to a community-based therapy class,” she said.
“The fact that the programs are specific to people with MS, what it does is builds a community…that’s what they’re taking away. The reality is, the nature of the program and how they offer the program will change fundamentally.”
There are roughly 2,000 people living with MS on Vancouver Island.