"I was a piano teacher
really all my life.

Until 2016."

It started with bouts of numbness here and there. Then some loss of feeling in one hand, and then the other. When Bibianne Yu was diagnosed with multiple sclerosis in her late 30s, it took away a part of her identity: she could no longer call herself a piano teacher.

But she’s found strength in her treatment at Unity Health Toronto’s St. Michael’s Hospital and is optimistic about the ongoing research into tackling “Canada’s disease.”

"I was a piano teacher really all my life.

Until 2016."

It started with bouts of numbness here and there. Then some loss of feeling in one hand, and then the other. When Bibianne Yu was diagnosed with multiple sclerosis in her late 30s, it took away a part of her identity: she could no longer call herself a piano teacher.

But she’s found strength in her treatment at St. Michael’s Hospital and is optimistic about the ongoing research into tackling “Canada’s disease.”

Bibianne's story

By Ana Gajic. Photos and video by Yuri Markarov. Produced by Michael Oliveira.

Bibianne Yu sits still before her piano.

Yu pounds two dramatic staccato chords to break the silence and then a flood of notes — fast and winding, almost impossibly so — flow from her fingers. Her passion and skill pierce through the hum of static on the digital recording of one of her old auditions, a performance of the Poulenc concerto for two pianos.

Bibianne Yu shares her story during an interview at her east Toronto home.

Bibianne's story

By Ana Gajic. Photos and video by Yuri Markarov. Produced by Michael Oliveira.

Bibianne Yu sits still before her piano.

Yu pounds two dramatic staccato chords to break the silence and then a flood of notes — fast and winding, almost impossibly so — flow from her fingers. Her passion and skill pierce through the hum of static on the digital recording of one of her old auditions, a performance of the Poulenc concerto for two pianos.

Bibianne Yu shares her story during an interview at her east Toronto home.

Listening to the performance now, the former concert pianist and instructor feels humbled.

Yu, now 47 and a resident of east Toronto, hasn’t touched a piano in close to three years.

She sold her beloved piano in 2016, eight years after she was first diagnosed with multiple sclerosis (MS). The disease affected the strength and agility of her fingers and gradually took away her ability to enjoy one of her life’s greatest passions.

“At times, it felt like I had gloves on my hands,” Yu says of her increasing struggles to practice and perform. “Playing just didn’t have the same satisfaction. But now, I cannot help but feel very proud,” she continues.

“Not boastful, but proud to have accomplished so much in music. I am so thankful.”

“It was just in my heart,” Yu says of her lifelong passion for the piano and music

the diagnosis

“I sat in my car and shed a single tear,” Yu says of her reaction after first being diagnosed with MS in 2008. “It wasn’t that I was brave, it was that I was processing having a chronic, debilitating disease but not yet feeling it.”

MS is a degenerative disease that impacts the central nervous system by breaking down nerves’ protective layering and causing damage. For many patients like Yu, they feel healthy at the time of diagnosis. The disease flares up and creates ebbs and flows – meaning that patients may go months without feeling its effects.

Though there are treatments, there is currently no known cause or cure. It strikes at the prime of life – when people are in their 20s and 30s – and most often impacts women.

Yu’s MS started with bouts of numbness here and there – nothing that she found too concerning. But she eventually lost a significant amount of feeling in one hand, and then the other. When she finally saw a neurologist in Michigan, where she was living and working at the time — as the director of the Music Preparatory Division of Oakland University — magnetic resonance imaging (MRI) scans revealed lesions on her brain.

She eventually returned home to Toronto and was referred to St. Michael’s Hospital to continue to face the disease.

Not a “fight” against MS but a journey together with St. Michael’s ​

Multiple sclerosis has been dubbed “Canada’s disease,” with one of the world’s highest rates of the condition. Eleven Canadians receive an MS diagnosis every day and one in every 385 Canadians are living with the disease.

St. Michael’s is the country’s largest MS centre, with more than 8,000 patients receiving treatment at its clinic. The hospital has a unique opportunity to change the trajectory of the disease for its patients not only through world-class, specialty care but also with its leading research and innovation.

“We are one of the largest clinics in the world, and that makes a difference,” says Dr. Xavier Montalban, a world-renowned neurologist and researcher who was recruited from Barcelona to lead the BARLO MS Centre at the hospital, which is under construction and expected to open in 2020.

Dr. Xavier Montalban, a world-renowned neurologist and researcher who was recruited from Barcelona to lead the BARLO MS Centre.

“MS is one of the only neurological conditions we have modified the natural history of in the last three decades. 

The prognosis of a patient recently diagnosed relative to one diagnosed 25 years ago is incomparable.

“The potential for us to continue to improve is exponential.”

Dr. Montalban’s optimism certainly made an impression on Yu. 

When she came in for her first appointment, she had the same mentality as many patients.

“I said, ‘I’m going to fight this,” Yu recalls. But Dr. Montalban suggested a change of perspective.

He told her: “A fight implies that you could lose. And you’re not going to lose, anything you have going on, we’ll find ways to treat it together.”

That message left Yu feeling comforted and ready to embrace the challenges that she knew would come.

 “It’s good to have the confidence that someone is going to help you along the way,” Yu says.

“And St. Michael’s has given me that.”

Watch Bibianne's story

THE FUTURE OF MS CARE AT ST. MICHAEL'S

How the BARLO MS Centre will offer new hope

Part of what will make the BARLO MS Centre unique is how a well-rounded team of specialists — occupational therapists, nurses, social workers, neurologists and scientists — will all work together to provide a personalized care plan for patients.

The innovative space occupying the top two floors of the hospital’s new Peter Gilgan Patient Care Tower will reimagine access to care, clinic design and knowledge generation, creating a “one-stop shop” for patients.

"My objective, and this is the reason why I came here to be honest, is to build up the best MS centre in the world. I think we are close to that and it will happen in a very, very near future."

Dr. Xavier Montalban,
director of the BARLO MS Centre

 

Right now, when patients come in to the clinic they are generally only see their neurologist. If they need special attention from a nurse, occupational therapist or social worker, they see them afterwards and sometimes have to wait to do so.

Nurse practitioner Alexandra Roll says the vision is to have nursing be the first point of contact to help tailor each patient’s visit.

“The BARLO MS Centre will provide leading, world-class specialty care by bringing all of our resources into one major centre,” Roll says. “Our patients’ courage inspires each of us and we’ll be able to serve them in a timelier way and help ensure they’re having the best care experiences possible.”

Discovering a
new purpose

Yu first started to play the piano as soon her hands were big enough – at age five. She had begged her parents for lessons. She can recall the years she spent waiting for her hands to grow were the longest in her life.

“It was just in my heart,” Yu says of her passion for music.

She went on to teach hundreds of people to play – from young students starting out just as she had to elderly students in their 80s – and performed for thousands, including at competitions around the world.

Yu now spends her days living a life impacted, but not defined, by MS.

She had to take time to reflect about her life’s path without piano and ultimately discovered the core of what she loved about music.

“Piano has been a bridge for me to connect with people,” she says. “So I’ve set out to create relationships in different ways.”

Instead of piano, she now serves on the ESL Cafe Team at her church to teach English as a second language to newcomers. She participates in activities through her church and goes to the gym three times a week.

Behind her bedroom door, she keeps a photo of herself as a child, beaming with her first piano.

That smile still lives on Yu’s face, now powered by different things.

“Resilience is a really good word to use for learning piano,” Yu says.

“Living with MS is similar. There are days that are frustrating but those pass, and you need to strive forward.”

nurse practitioner alexandra roll explains

What We Do

What does a typical patient visit look like at the MS clinic right now?

How will a typical patient visit change once the new BARLO Centre is open?

What do you want people to
know about MS?

FAQ

Frequently asked questions about multiple sclerosis

MS is an autoimmune disease that affects the central nervous system, which is made up of the brain, spinal cord and optic nerves. The disease attacks myelin – the protective layer that surrounds and insulates nerves – disrupting the transmission of nerve impulses through nerve fibres. Essentially, the diseases causes communication problems between the brain and the rest of the body.

The symptoms of MS vary from patient to patient, but the disease typically presents with extreme fatigue, weakness and tingling. As MS progresses, patients may experience impaired sensation, lack of coordination, vision problems, mood changes and cognitive impairment.

Upon initial symptoms, patients are typically referred to a neurologist who will conduct a thorough neurological assessment to evaluate patients’ eye movement, strength and coordination. The neurologist may also order magnetic resonance imaging (MRI), which identifies soft tissue damage in the brain and spinal cord.

In some cases, the neurologist may also employ evoked potential (EP) tests, which involve stimulating specific nerve pathways and then measuring the responding electrical activity in the brain. Slowed impulses are a symptom of myelin damage, indicating MS.

A third test involves a spinal tap to draw fluid from between two bones in the lower spine. This fluid is typically clear and colourless, and changes can indicate an abnormal immune response, suggesting MS.

MS is most commonly diagnosed in adults between the ages of 20 and 49, but younger children and older adults have been known to be diagnosed as well.

The cause of MS is unknown, but current evidence suggests that lifestyle, environmental, genetic and biological factors all play a role. MS is three times more likely to occur in women than in men, and is more common in people of northern European background.

Canada has one of the highest rates of MS worldwide, with an estimated 1 in every 385 Canadians living with the disease.

No. MS is not fatal for most people living with the disease. Thanks to improvements in symptom management and disease-modifying therapies, most people with MS can expect a normal or near-normal life span.

No. However, treatments designed to manage MS can significantly alter the disease course and diminish related symptoms.

Treatments for MS range from medicinal to non-medicinal strategies, such as occupational therapy, exercise programs and physiotherapy.

The earlier patients seek treatment, the better their prognosis.

Close Menu