Living – and thriving – with MS
Carolyn Armstrong couldn't stop herself from falling down.
It happened over and over again. Eventually, she convinced herself a brain tumour was behind her clumsiness and that she only had months to live.
When her doctor told her she had multiple sclerosis, she was “ecstatic”.
“I literally went, ‘Yes! Yes! Thank God',” she said. “You can live with multiple sclerosis. You can maintain your life. You can still go out and work. You can still go to parties.”
She's now president of Bermuda's MS Society and is determined to raise awareness. The charity will observe National MS Week from March 6 to 10.
Fundraisers during that period will go towards medical costs. Some of the group's members pay as much as $2,900 a month for drugs.
“If you have MS and your insurance covers 80 per cent, we will cover 75 per cent of the remaining balance,” said Ms Armstrong, who learnt she had the disease 14 years ago.
The former secretary knows how useful that is from her own experience.
She broke an ankle and a leg in a fall a year ago and now uses two walking sticks to get around. She has cataracts and, like many people with MS, optic neuritis — an inflammation of the optic nerve.
Her short-term memory has also been affected by the disease.
“I write notes all the time,” she said. “I have friends over for movie night on Saturday nights and another friend will call me up on Sunday and say, ‘What did you watch?'”
She doesn't remember.
Having a sense of humour is critical in her condition.
“You have to,” she said. “Depression is another part of this and a lot of people in the group do get down.
“I've always been an upbeat person. I can always see the glass half full. Sometimes in life it's the hard knocks that make you stronger, so [I believe you should] embrace the hard knocks. Go out in the garden, sit in the sun. Go to the beach and listen to the waves.”
The MS Society has about 36 members. Ms Armstrong is hoping people who aren't members complete a brief survey on the charity's website.
She believes there could be as many as 150 people living with the disease here.
“If they are employed, they don't want their employer to know because if they have to downsize, the weakest person will go,” Ms Armstrong said. “We are actively trying to collect as much data as possible about those who suffer from MS in Bermuda, so if you have MS please log on.”
Joining the group has provided her with great support.
“[It showed] there are others out there like me; they could also understand. Know that help is out there if you look for it.
“Even though we all have MS it's very important to remember, we're individuals with individual fingerprints. No two people with MS are the same. I could have relapsing-remitting MS and drive a car, but you can have another person with relapsing-remitting and they're dragging their feet.”
Fatigue is a common side-effect. Ms Armstrong said she doesn't let it hold her back.
“A normal person walks a mile; a person with MS can walk that mile but with a 250lb weight on their back and 100lbs on each foot.
“That's how tired we get. That mile is the equivalent of 100. I can walk up Gibbs Hill Lighthouse, but I take it one step at a time. That's what one needs to do. You'll eventually get to where you're going.”
ABOUT THE DISEASE
The disease usually strikes people between the ages of 20 and 50. Women are two to three times more likely than men to get it, and there's no known cause or cure.
Symptoms include depression, fatigue, poor coordination, memory loss and bladder and bowel problems.
MS has four forms: relapsing-remitting, primary-progressive, secondary-progressive and progressive-relapsing.
Businesses are asked to hold a denim day in aid of the MS Society of Bermuda next Friday, March 10. Participants are encouraged to wear orange, the official colour of MS.
For more information visit www.mssociety.bm