Multiple sclerosis: A cure would mean freedom

After being diagnosed with relapsing remitting multiple sclerosis in 2011, Prince George resident Amy Ayers, 44, was left feeling isolated and depressed. She withdrew from her family and friends and, unable to work anymore, lost the socializing aspect that came from having friends in the office.
“I went into a state of bad depression. I was mad and felt sorry for myself. Most of all I was scared,” Amy says.

One of the hardest things to deal with was the fatigue.

“I feel like I’m always tired which means I don’t get things done.”

She also struggles with cognitive and memory issues, something that can be invisible to the outside world. Counselling has been an important step to getting her life back.

“I went through a year of counselling and courses to help me learn how to live with MS. Today I have a regular schedule so I know how much I can do and how much I cannot do. I still have bouts of being mad but I just work my way through it.”
Adding to Amy’s frustration were the issues she faced with disability benefits and insurance.

“I always thought I worked in a company that had great insurance for medical, dental and disability. Until you have a disability you will never know if your benefits are good or not.”

Unable to go back to work because of the fatigue and poor concentration, Amy was on long-term disability. But after two years the insurance company cut off her benefits, leaving the family struggling. Help came in the form of Marilyn Craig and the Volunteer Legal Advocacy Program (VLAP) at the MS Society BC and Yukon Division, who walked her through filling out the forms for her CPP Disability.

“Some people may think that it can’t be that hard, well when you cannot remember what you did yesterday it is hard.”
It was a long year, with Amy having to go through a committee of three doctors who had to agree that she needed to be on disability. Finally, she received good news.

“I ended up getting my CPP disability and my disability insurance back. And in a couple of cases retroactively paid,” she says. “Marilyn and VLAP have helped my family more than they can ever know. Her hard work saved my life.”
Leaving the fears of financial insecurity behind her, Amy is now free to focus on more positive things, like regaining some of her independence.

“Independence is the ultimate goal. I have always been an independent woman, but it’s something I struggle with every day now. Knowing when to stop doing something to conserve my energy, and when to take a nap.”
Her continuing issues with fatigue mean she can get exhausted easily, finding it hard to meet up with friends. But she is still able to get out, and volunteers at her granddaughter’s daycare once a week for a few hours. They are understanding about her needs. “It’s great because if I am not feeling good I can call in to say I will not be there,” she says.
For Amy, a cure would mean freedom, and no longer progressing with the disease. She would stay the self-proclaimed strong-willed, independent woman she has always been, able to take care of herself and others.