Fighter’s attitude key to coping with MS

Melissa Norman could probably teach us all a lesson about what’s really important in life.
Since 1988, the Fort Frances woman has been living with Multiple Sclerosis–an unwelcome guest that stole her ability to walk five years ago.
MS (which means “many scars”) is the most common disease of the central nervous system affecting young adults in Canada, afflicting almost twice as many women as men.
It attacks the myelin covering of nerve fibres in the central nervous system, causing inflammation and often destroying the myelin in patches. The results include vision problems, extreme fatigue, loss of balance, bladder and bowel problems, numbness, pain, weakness, and tremors.
Spontaneous recovery from symptoms can occur and last for several months or years. Recurrent attacks of neurological symptoms, followed by periods of improvements, is called “relapsing-remitting,” with “secondary chronic progressive” (periods of remission and progression) and “chronic progression” (characterized by unpredictable attacks) causing further disability.
As yet, the cause–and a cure–remain a mystery.
While the disease is a formidable opponent to Norman’s well-being, she’s not about to let it steal her spirit, gratitude, or visions of the day when she’ll walk away from her wheelchair.
“My legs are so weak that I can’t hold myself up anymore [but] I’m too damn young to give up yet,” Norman stressed Monday, praising her family for their support.
“I’m only 31 years old and I have my daughter to raise–there’s no way I’m giving up,” she vowed. “Sometimes I sit and cry and think ‘Why me?’ but there are a lot worse off people than I.”
A drug called Interferon Beta 1b might make the difference for Norman. Better known as Betaseron, she’s been taking the drug by injection three times a week for nine months–and it has given her a relatively new lease on life.
“They say this drug does wonders for people [and] I haven’t had an attack of MS since I started taking it–even that is a positive outcome,” Norman reasoned, recalling the last MS attack took away her vision and speech.
“Even if I can’t walk, I still feel good,” she added.
May is MS Month across Canada, and MS groups like the one here have been busy fundraising to help further medical research that will bring answers and, hopefully, a cure.
The second-annual MS Carnation Campaign raised $4,200 locally, with proceeds going towards the MS Society in Thunder Bay. Across Canada, thousands of volunteers sold more than $1 million worth of bouquets for the fight against MS.
Norman was honoured as the MS “Mother of the Year” for the local campaign.
But it’s also a time for raising awareness about the disease among the public, where pre-conceived and often inaccurate notions about MS linger, said Gayle Arpin, co-ordinator of the local MS group.
She’s lived with the disease since 1989, with her biggest battles coming from unpredictable attacks of severe fatigue and trigeminal neuralgia (excruciating facial nerve pain).
But she remains upbeat, grateful for “the small stuff”–and passionate about getting the message out that MS support is an arm’s-length away.
“The biggest misconception is that everyone with MS is in a wheelchair,” said Arpin. “[But] 90 percent of us look perfectly normal.
“People will say ‘But you look so well’–MS people hate that and will just laugh,” she said with a smile.
“Fatigue is one of the biggest and most common, most dramatic symptoms,” she continued. “It’s not a normal fatigue, it can stop you dead in your tracks.
“You can be fine this morning but by two [p.m.] be in bed and all the plans you’ve made for the day have to be cancelled,” Arpin noted. “It’s very hard on families.
“If I had to describe MS in one word? Powerful,” she said. “It can knock you down [and] it’s very humbling. But [humble] is a good thing, I think.”
Arpin said there’s no question MS is tough on families, often striking during the prime years of their working career and the parenting of young children.
Though she admitted the thought of future attacks scared her to death, Arpin mirrored the same “chin up” attitude that Norman–and many other MS sufferers–hold fast to. And she also believed the disease had added a positive dimension to her life.
“I’ve gained more than I’ve lost–but that’s subject to revision at any time,” she laughed. “You learn to appreciate so much more [and] have more empathy for so many people.
“You have to concentrate on what you have, not on what you’ve lost, and spend time and energy on the things and the people that are important to you because you won’t have energy for it all,” she reasoned.