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International Parkinson and Movement Disorder Society
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        VOLUME 27, ISSUE 1 • MARCH 2023  Full issue »

Toronto Western's advisory board brings patient perspectives to the other side of care 

The Movement Disorder Clinic’s Patient Advisory Board at Toronto Western Hospital was established in the fall of 2019, a few short months before COVID-19 became something more than an item in the nightly news. We managed to meet in person a few times before moving to Zoom, where we remain today.  

From the beginning the feeling in the room (both real and virtual) was one of confidence, inclusivity and resilience: Confidence gained and learned through experiences, both good and bad, that have shaped and strengthened our lives. Inclusivity from knowing that the answers can come from the most unlikely of places. And resilience. The resilience that allows you to get up and participate meaningfully, everyday, in your or your partner’s life with a movement disorder and still see the humor and love that awaits, if you’re willing to look for it.

The PAB is full of people with these qualities. A group of people so different in style, intellect and talent, yet so united by a common experience. What a perfect mix of individuals to brainstorm, explore and discuss the issues that come up at the MDC and to advise the faculty and staff, while still respecting what they do.  

The MDC at Toronto Western is a world-class clinic. It’s a small operation that employs about 50 people — the little engine that could. Patient care is as good as anywhere and research and advanced treatments are cutting edge. The MDC is all of these things primarily because of the work of the clinicians that perform miracles, solve puzzles and improve their patients’ lives, not because of anything the PAB does. But the PAB is essential. 

The patient voice has never had a more direct and effective conduit to the clinicians at the MDC — and they are listening. They attend our board meetings whenever possible and take part at the committee level. It works. But we can’t and won’t stop there. Looking forward, we have a new committee for patients going through advanced therapies and a new support  group to follow. A new video version of Clinical Research 101 is in development and could be an important step in the delivery of information to the patient community. We are establishing a relationship with the PAB at Bas Bloem’s clinic in the Netherlands that could become a great resource in the search for new ideas and approaches like the active engagement of MDC patients in research.  

Patients working side by side with the clinicians and staff. And so it goes.  

The Movement Disorders Clinic is and will remain a destination for young neurologists looking to complete their fellowship in the study of movement disorders. We hope and believe that the Patient Advisory Board at Toronto Western can play an ever more important role in maintaining the stature of this Movement Disorders Clinic, while helping to improve patient experience bit by bit along the way.  


Patient Advisory Board at Toronto Western Hospital 

· Gordon Myers, Board Chair 

· Hugh Johnston 

· Soania Mathur 

· Ron Prosserman 

· Jeff Ginsburg 

· George Crawford 

· Anne Bada Crema 

· Gerry Smith 

· Missy Mandel 

· Joe Van Koeverden 

· Harry Forestal 

· Aneta Josefowicz-stecher 

· Frank Sgarlata 

Read more Moving Along:

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