May is Multiple Sclerosis Awareness month. Nurse, writer, world-traveller and Consumer Advocacy Manager for HandyDart services, Linda McGowan sheds some light on this unpredictable disease.
Four months after completing the Vancouver Marathon, Linda McGowan, a Vancouver nurse and mother of two, was diagnosed with multiple sclerosis (MS) in 1983. She was barely 35 at the time.
Canada’s disease
A neurological disease, MS affects the brain, spinal cord and optic nerves. When a person has MS, the myelin (the covering that protects the nerves in brain and spinal cord) is damaged and may form scar tissue. This scar tissue often blocks or slows down messages sent along the nerves, which result in a variety of symptoms.
“It’s uncommon but I was diagnosed with almost no symptoms. I had just a bit of numbness in my right hand and something called Lhermitte’s sign,” says McGowan, explaining how she felt an electric shock down her back when she bent her head down.
Other symptoms of MS can range from numbness and tingling, vision problems, impaired speech, loss of balance and coordination, extreme fatigue, loss of mobility, and in some cases, partial or complete paralysis.
Now, according to the MS Society of Canada, around 100,000 thousand Canadians live with this disabling disease and approximately 1,000 new cases are diagnosed each year. It is usually diagnosed between the ages of 15 to 40 and is thrice as likely to occur in women than in men. “Canada has the highest rates of MS in the world,” says McGowan. “MS is Canada’s disease, people don’t realize that.”
There are several main types of this disease. The most common form of MS when it first occurs is Relapsing Remitting MS (RRMS), which is characterized by attacks or relapses followed by periods of complete or partial recovery called remissions. About half the times, relapsing-remitting MS progresses to Secondary Progressive MS, where the MS symptoms start to worsen after 10 years of diagnosis. “That’s what I have,” shares McGowan, who has been using a wheelchair since 1992. “It’ll go on, and drop a bit, go on and drop a bit and you never know when that drop is going to come. The drop means getting worse.”
As of now, it is unknown what causes MS, although current research points to a number of interconnecting factors like environment and genetics. Canada is a high-risk for the disease, and MS usually is most often found in areas further away from the equator.
Unpredictable and challenging
While MS is not fatal for the majority, there can be a lot of challenges and every person living with MS often faces a unique set of symptoms to manage. “Some people are diagnosed and 30 years later, they are no different. You never know with MS,” explains McGowan. “Or else you can be diagnosed and 6 months later, be in a wheelchair. It’s very different for everybody. It’s very unpredictable.”
The unpredictability of the disease means people living with MS live in a constant state of uncertainty. According to McGowan, while she knows what her disability is right now, she remains aware of the fact that she could wake up the next morning and have it be completely different.
Another challenge that arises with MS is extreme fatigue. “I always say, when you start the day, you have a cup of energy,” shares McGowan. “When that cup of energy is gone, it’s gone. And there is no way you can get it back.” This prevents spontaneity, she adds, saying how planning has become a part of life.
While there is no cure for MS at the moment, there are several treatments and medications that primarily help manage the symptoms. In addition, it is recommended to live an active, healthy lifestyle with a well-balanced diet.
Life with MS: “Not a deterrent to adventure.”
Despite all these challenges, people who have MS can – and should – lead rich, fulfilling lives. “When you are diagnosed with something like MS, when a problem arises, you have just two choices,” says McGowan, who still works full-time as a nurse. “You can choose to sit at home and moan and groan and complain that life is not fair. Or you can take what you have and do what you can do.”
That is exactly what she has done. Her diagnosis did not deter her from pursuing her life’s goal to travel and see the world. In 1989, she took her first trip to China after her diagnosis. In 2005, she travelled across India by train for several weeks, visiting cities like Delhi, Jaipur, Jaisalmer (where she went on a four-day camel safari), Chandigarh, Shimla, Agra and finally ending her trip in Calcutta.
“I have been on every continent at least once,” says McGowan, who has travelled to more than 110 countries in the last 20 years. Some other of her travel highlights includes climbing up to 18,500 ft. on Mount Everest using a TrailRider (a single-tire wheelchair) and seeing emperor penguins on the Falkland Islands.
“If I want to live my life, I can’t have MS be the main focus,” says McGowan. “I always say, being in a wheelchair is not a deterrent to adventure.” She has published her experiences in a memoir, Travelling the World with MS...In a Wheelchair, an inspirational collection of factual, humorous stories that encourage people to pursue their goals.
Hope for a cure
Researchers are learning more about what causes this neurological disease and working towards figuring out ways to prevent it. Organizations like the MS Society of Canada, not only provide essential services and programs for people living with MS, but also fund approximately $10 million every year in research to support studies that investigate that disease, in hopes of finding a cure.
For more information about MS, visit the mssociety.ca.
