Support key for those living with MS

“Some days you’re feeling really good and other days you’re feeling really rotten. And they understand what is going on, so there is help there.”

Bain is the co-ordinator of the support group and receives information from the MS Society, which she passes along to the attendees.

About 10 people meet regularly, but according to Bain, they sometimes have as many as 20 people attending meetings at Christmastime.

“We get together for socialization but mostly to recognize that we all have this disease, MS, and we’re there to support each other.”

Prior to her own diagnosis, she said she was walking “like a drunk,” falling over and had vision problems. She lost the feeling in her hands and had a pins-and-needles sensation throughout her body. She was working for a nursing program at the time and one of the nurses noticed there was something wrong.

Bain ended up going to Holy Family Hospital in Prince Albert (now closed) and was then taken to a hospital in Saskatoon. She was in the hospital for two weeks and underwent tests at a time the hospital didn’t have an MRI machine.

Answers finally came after a lumbar puncture, also known as a spinal tap, was performed. Doctors kept a close watch for other symptoms before they finally made a diagnosis in 1987. She has a relapsing-remitting kind of the disease.

At the time, she had small children, and MS made it difficult for her to care for them. She said she couldn’t perform tasks such as preparing food for them. Her hands didn’t work, she said, and it affected her ability to walk and attend different events her children were involved in.

“Through determination, you learn different ways of doing and I think the support group was really good at encouraging you to try things. Sure, I do them differently, but I do them.”

She is being treated a medication called Rebif, which has improved her ability to walk and she now is able to work full time.

In Saskatchewan, there are different kinds of supports and support groups that are emerging, according to Erin Kuan, president of the MS Society of Canada Saskatchewan Division. She pointed out that Bain’s group focuses on people with a more advanced, or progressive, form of MS.

In Saskatoon, there is a support group for women under the age of 35, and the issues they deal with can differ from the ones faced by people aged 55 and over, Kuan said.

But there is also support for caregivers, as well. As a person’s disease progresses, they rely more and more on a caregiver, which can be spouse, relative or friend.

“When you think about those kinds of support networks, not everybody wants to join a group, but to know that those sorts of resources are available in their community or certainly with the MS Society are crucial to someone being able to navigate their disease and their well-being.”

MS is an unpredictable disease, and many people who receive diagnoses are between the ages of 15 to 40. It can come at a time when someone is finishing school, starting out in their career, or just starting a family, said Kuan.

She said the society sees a myriad of stories from those with MS about how they are living with the disease.

“There’s no one size fits all when it comes to multiple sclerosis and that’s the most frustrating part for our clients in Saskatchewan,” she said.

She said what they saw at Sunday’s walk is an “incredible” amount of energy they want to harness. She described such events as a way to rally around and support a person with MS — it shows them that they not only have a family who loves them, but a community that will support them.

But the walk can be a first point of contact to reach out for support, as well, Kuan said.

In Bain’s eyes, MS Walks, such as the one in Prince Albert, are important too. She said they create so much awareness about how many people there are in the city and area live with the disease.

“Creating awareness, so many people would see you when you’re first diagnosed, walking like a drunk, so you’ve got this stigma that ‘oh, she’s drunk again or he’s drunk again.’ So then you have to let them know that ‘no this is MS,’ and try to get them to understand.”

Bain took part in the first Prince Albert walk, but took time away from participating in the walk due to other commitments and to tend to other family members with health problems.

But, she said she is back now.

“And I hope we can rejuvenate this walk and let the people in Prince Albert know what it’s all about and gather lots of money to go to research to find a cure.”

tjames@panow.com

On Twitter: @thiajames

by Thia James

Support key for those living with MS

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