Sometimes it can start with a small tingling or numbness in an arm or leg. Other times, it can be a bolt of blindness that temporarily knocks out an optic nerve.
For Phil Mitton, the first signs were subtle; a pull on his left knee after a motorcycle spill; a slight feeling of dizziness following a long hospital shift.
“It was the little things that started going,” he says, “the simple, everyday things you take for granted, like taking a step down a staircase, going to the bathroom, holding onto the steering wheel. One day, something simply doesn’t work the way it used to. Before you know it, it’s happening every day.”
Phil looks up as he talks about the first small signs. When he looks at you, it’s easy to imagine he’s the same tall, athletic guy pictured in the photo on the table, a photo that must have been taken just after high school.
Back then, he says, he loved motorcycles and had enough energy to attend college, hold down a job and juggle a couple of social events at night.
Fast-forward 13 years and Phil has traded in his fast-moving vehicles for a motorized wheelchair that moves him from one room in his renovated house to another. He can’t walk and has limited use of his hands.
Phil has progressive multiple sclerosis (MS), a particularly devastating form that continues to chip away at his body as it damages the myelin that coats nerve fibres. In Phil’s case, the disease shows its damage in incremental and catastrophic ways. Three years ago, he lost the ability to walk.
Just this past year, his right hand began to curl, making it difficult to hold a pen or use a knife and fork. A small incision in his stomach houses a suprapubic catheter, and it takes all of his energy to hold his body still while he’s transferred from his bed to his wheelchair.
It is estimated that Canada has one of the highest rates of MS in the world—affecting approximately 93,500 Canadians according to the Canadian Community Health Survey—yet much is still unknown about the disease.
The Canadian Multiple Sclerosis Monitoring System (CMSMS) is a new database at CIHI that, over time, will help us learn more about MS in Canada. The CMSMS will allow us to record, measure and monitor the evolution and treatment of MS.
Development of the CMSMS started in April 2011 through the collaboration of an extensive network of experts. They included people living with MS, their caregivers, the Multiple Sclerosis Society of Canada, the Canadian Network of Multiple Sclerosis Clinics, clinicians, researchers, international experts and various governments.
The CMSMS is just beginning to receive data. It’s this kind of data that will help clinicians, researchers and ultimately the public better understand disease patterns across Canada, variation in the use of treatments and long-term patient outcomes over time. The CMSMS will also give health care managers important information to inform health service planning decisions that improve the quality of care for people, like Phil, who live with MS every day.
Quality of care can make a huge difference in the life of someone living with MS. In this sense, Phil says he’s one of the lucky ones. Although, in his words, the disease has “hijacked” his body, it’s left his thoughts clear and his speech remarkably unaffected.
He’s also still able to live at home.
A motorized wheelchair, renovated walkway ramp and twice-daily visits from personal support workers (PSWs) make it easier for Phil to stay home. A couple of times a week, he meets up with friends at Brantford’s Adult Recreational Therapy Centre (ARTC) where they talk, hang out or play cards.
Keeping Phil at home isn’t easy. His family gratefully relies on the visits provided by the PSWs. It can take one PSW up to an hour and a half to help Phil wash, dress, shower and get into his chair so he can pull up to the dining room table for breakfast. When he’s finished, he’s exhausted—a constant reminder of how MS has changed simple, everyday tasks. “There’s never a day when I wake up and say, ‘I don’t feel like I have MS today.’ It’s always there.”
So too is the strain of caring for Phil. “It’s tough,” says Libby, his sister, a nurse by training, who’s reduced her hours to help care for Phil. She studies the ceiling. “I’m thinking of redecorating again,” she says.
She isn’t talking about adding new blinds or curtains to the window. The last time she redecorated, she punched out the wall between the kitchen and sunroom to install a new $14,000 accessible bathroom.
Now she surveys the living room. “Maybe we can hang a patient lift right there,” she points to the ceiling. “That might make it easier for us to move Phil. What do you think?” she laughs. She’s only half serious about the lift, but it’s a reminder of the reality of caring for someone at home.
MS is a difficult disease to identify, particularly because it produces varying symptoms in people: impaired walking in one, numbness in another. As the myelin is destroyed, it leaves behind scar tissue that scrambles messages from the brain and spinal cord to the rest of the body. “It’s different for everyone,” says Phil. That makes it a hard disease to diagnose.
And while there’s no cure, there are treatments. Phil’s tried quite a few of them, from interferon to a regimen of medications. Right now, he’s watching a buddy with MS undergo chemotherapy every two months as part of a clinical trial.
Is it working? “To be honest,” says Phil, “I’ve never seen anything that really works. I’ve been on all kinds of medication and tried all sorts of treatments and therapies, and for me, I just get a little worse every day, just a little worse.”
Even at that, he’s optimistic. “We’ve only been learning about MS for a little while, just scratching the surface. Doctors still don’t know what causes it.”
And though they’re not there yet, Phil’s hopeful that researchers will eventually find the right combination of treatments, maybe even a cure, that will make living with MS—or better yet, living without MS—a real possibility.
For now, he says, “there’s not a thing I can do about it except deal with it, stay positive and smile. So that’s what I’m doing.”