Living with MS
Small gathering acknowledges MS Awareness Month during flag raising event at CBRM city hall
SYDNEY — Long lineups and traffic snarls don’t bother David MacKinnon.
Nope, he doesn’t give them a second thought.
And for good reason.
The 53-year-old Whitney Pier resident has been living with multiple sclerosis, or MS, for the past nine years.
“I tell people that if I can get up in the morning it’s a good day,” said MacKinnon, who was one of about two-dozen people who attended a ceremonial flag-raising ceremony at Cape Breton regional Municipality’s city hall on Wednesday in recognition of the start of Multiple Sclerosis Month.
Like some of the others, he showed up with the assistance of a cane. Some days he needs a wheelchair. On really bad days he can’t get out of bed.
He recalls that in the days before his diagnosis he would often stumble or trip, sometimes leading to falls. It happened enough that he sought medical help.
“When I was diagnosed with MS it threw my world upside down — my neurologist handed me a letter that essentially told me that I was going to be off work for the rest of my life,” said MacKinnon, who serves as the president of the Cape Breton chapter of the MS Society of Canada.
“He told me that if I didn’t stop work that I would end up in a wheelchair much sooner than if I stopped working right away.” He stopped working.
To explain how MS affects his legs MacKinnon uses the analogy of a very taut plastic band.
“Imagine that band being pulled so tight that it’s almost ready to snap, so when you go to lift your leg over a step there is no muscle there to tap into to make it work the leg over the step and that’s why we trip and fall and stumble,” said MacKinnon.
He’s not alone.
An estimated 100,000 Canadians (about one of every 385 people, the majority being between 20 and 40 years of age) are affected by the autoimmune disease that affects the central nervous system. It’s even been referred to as “Canada’s Disease” because although an exact cause has yet to be pinpointed, contributing factors include a Vitamin D deficiency and descent from Northern Europeans, both characteristics of Canada.
A simplified explanation of MS is that the disease attacks myelin, a protective covering of the nerves, and causes damaging inflammation. Slight damage to myelin causes minor interruptions of the nerve impulses, while serious damage can result in complete disruption of nerve travel through the body.
According to the MS Society, the disease is unpredictable and has a wide range of symptoms, including extreme fatigue, lack of co-ordination, weakness, tingling, impaired sensation, vision problems, bladder problems, cognitive impairment and mood changes.
During the raising of the Multiple Sclerosis Society of Canada flag in front of CBRM city hall, Mayor Cecil Clarke read the declaration proclaiming the acknowledgement of MS Awareness Month.
For Clarke, the disease is now a part of his life. His husband Kyle has MS.
“MS is no stranger to Cape Breton but it’s not until you have someone in your family with a chronic disease or ailment that you really appreciate what effect it has on day-to-day life,” said Clarke.
“It changes how you co-ordinate life and how you pace your life — Kyle has a great attitude and we remain optimistic, you can’t let it stop you.”
Deputy Mayor Ivan Doncaster also knows MS as his wife Viola has been dealing with it for years.
“It can be tough — you have to make a lot of adjustments,” said Doncaster, who was also on hand for the flag raising.
New Waterford resident Carl MacLeod was another attendee. The 83-year-old, whose wife suffered from MS for many years prior to her death six years ago, has become an MS awareness activist. Each year, MacLeod presents carnations, the symbolic flower of the MS community, to the CBRM mayor and council.
“My wife is gone but my determination is still there to promote MS awareness — I am quite concerned for people living with MS, it’s a heartbreaking thing and I’m hoping they’ll find a cause and a cure,” he said.
Alas, both remain a mystery. In terms of cause, there is evidence that lifestyle, environmental, genetic and biological factors are contributing factors, and studies are ongoing as to how susceptible people may be to MS in regard to gender, age, family history and personal habits.
There is no cure, although a number of drugs have been shown to slow the progression of MS in some people.
David MacKinnon received his first shot of a disease-modifying drug just two weeks ago. He hasn’t experienced any sideeffects and remains hopeful it will help slow down the debilitating effects of the disease that has so dramatically changed his life.