At St. Michael’s BARLO MS Centre, occupational therapist Cecilia Wan and social worker Mari Vella operate as a tag team, ensuring their patients get the physical, cognitive, mental, and functional support they need to get on with their lives.
If a patient needs a walker or wheelchair, say, Cecilia will source it, arrange to have it delivered, make sure her patient knows how to use it and find ways to offset the costs.
And while she is taking care of the practicalities, Cecilia is also watching for signs of distress.
“The question is not just, ‘Do you need a walker?’ it’s ‘Are you psychologically ready for a walker?’ says Cecilia. “Often patients are self-blaming. They say, ‘Maybe I just haven’t tried hard enough to walk on my own.’”
But in her 10 years as an occupational therapist, she knows how hard patients work to walk. The self-blame, she says, is misplaced.
So when Cecilia sees her patients struggling, she calls for backup.
Mari’s expertise is in counselling, including cognitive behavioural therapy, crisis management and mindfulness techniques. She’s also an exceptionally good listener.
Mari recently pulled out all the stops for Omar*, a man in his 50s with primary progressive MS who uses a power wheelchair.
“MS has taken a lot away from him,” says Mari. “He believes that his family is sad because of him. He sees the disease as his fault.”
Mari has been counselling Omar for months, getting him to work through frustrations he doesn’t want to burden his family with – like how it feels to sit in a wheelchair while his wife and children shovel snow.
“We’d talk for an hour at a time and I wasn’t sure I was changing anything for him,” says Mari.
But one day Omar came in and showed Mari a photo on his phone of an IKEA bed he’d put together.
“‘I did this,’” he told me. ‘It took me four weeks, but I did it!’ It was so meaningful because he did it for his daughter.”
But neither Mari nor Cecilia takes credit for these successes. They both are at pains to point out that their patients are the ones doing the hard work.
“When patients get stronger, I tell them ‘I’m not strengthening your muscles, you are,’” says Cecilia.
Or as Mari puts it: “Patients think we’ll solve their problems. But all we are doing is bringing out the strengths they already have.”
Mari and Cecilia are just two members of the expert team that will move over to our new BARLO MS Centre once it’s complete. St. Michael’s Hospital has launched a $40 million fundraising campaign to build a physical space that matches the excellence in care our patients already receive and to invest in research and education that will battle MS on all fronts.
When all is said and done, the BARLO MS Centre will occupy two floors and 25,000 sq. ft. in St. Michael’s flagship Peter Gilgan Patient Care Tower. It will have a cognitive lab for cutting-edge rehabilitation for memory and attention issues. It will also have a private space for advice about personal finances, family dynamics and navigating the health-care system. It will have a new infusion centre where patients and their families can feel comfortable during the long hours of treatments, complete with cozy chairs and lots of light.
Two families – the Barfords and the Loves – have already donated an incredible $20 million to create a centre that will be a world pioneer in research, treatment and care.
Please join us. With your support, we will build the world’s top centre for MS research and care.
The time is now.
*Out of concern for privacy, the patient’s name has been changed.