Local Support Groups


Burlington, Ontario

Ontario PSP/MSA/CBD Support Group patients and caregivers

Location: Port Nelson United Church, 3132 South Drive, Burlington ON

Meeting Time: Last Monday of every month 1-3pm (Excluding December)

Hosted by: CCF for PSP Awareness

Facilitator: January Bailey Will, EMAIL

January's Experience with PSP

Christmas in 2015 brought unexpected observations. My stepson and his girlfriend, who had last seen Jim in June, noticed something off about his behavior during their holiday visit. They wondered if he had been drinking, as his driving seemed different. To me, he seemed the same, but I recalled an incident in June when Jim had an accident on a fishing trip. But beyond that, nothing seemed out of place.

As 2016 rolled in, Jim started having backward falls. He brushed it off, blaming his office chair. By September, while I was in Scotland, his frequent calls to my cell phone raised eyebrows. The frequency of his falls increased, necessitating the help of a Personal Support Worker, especially for tasks like showering. Jim’s interest in routine activities dwindled, making me wonder how he could forget activities he once relished.

One particularly alarming incident at work landed him in the hospital. They pointed out his low B1 levels, which led to cognitive tests and the revocation of his driving license. But deep down, I felt there was a bigger issue. Our visit to a neurologist confirmed my suspicions. Still, their advice was just to keep up with B1 supplements.

Jim’s enthusiasm for life was ebbing away. His zest for socializing was gone, replaced by an ever-present desire to sleep. I found myself asking why we were being tested this way.

Life had been good to us. We were comfortable, and we enjoyed our travels. Our journey for answers took a turn when we met an insightful neurologist who diagnosed Jim with PSP. Unfamiliar with the term, I researched it at home, only to be overwhelmed with grief. Jim’s symptoms matched: the falls, abnormal eye movements, choking during meals, and imbalance.

Our subsequent visits painted a bleak picture. Jim’s deteriorating condition was evident, but his cognitive abilities remained intact. He even suggested moving to Long-Term Care (LTC), thinking it would ease my burden. How could I even consider it? He was my everything.

However, we pushed on. We got a walker and engaged in community activities. Yet, Jim’s health challenges persisted. By 2019, with a heavy heart, I put him on the waiting list for LTC. When he finally moved in August, a familiar face from his day program offered some solace. I visited daily, standing by him.

By February 2020, Jim’s health plummeted. He was losing weight rapidly, struggling with food, and eventually needed oxygen support. PSP’s cruel nature became more apparent each day. Witnessing a loved one’s decline like this was agonizing. On February 12th, he was moved to palliative care. I stayed by his side, ensuring he felt loved until his last breath on February 14th at 8 pm. I spoke to him for 15 more minutes, as advised, hoping he’d hear me. My heart was broken, but I took solace knowing he was now free from pain. xo


Burlington Support Group (Parkinson’s, PSP/MSA/CBD)

Address : Appleby Place - 500 Appleby Line, Burlington, ON L7L 5Z6, Canada

Date(s): Meets the 3rd Monday of each month (except July & August)

Time : 1:00 PM-3:00 PM

Contact Telephone : 1-800-565-3000    

Contact Email : info@parkinson.ca

By: Parkinson Canada

Burlington Carepartner Group (Parkinson’s, PSP/MSA/CBD)

Address : St. Paul Apostle Church - 2265 Headon Rd, Burlington, ON L7M 4E2, Canada

Date(s) : Meets the 2nd Tuesday of each month (except July & August)

Time : 1:00 PM-3:00 PM

Contact Telephone : 1-800-565-3000  

Contact Email : info@parkinson.ca

By: Parkinson Canada


Toronto, Ontario

Toronto Care Partner Group (Parkinson’s, PSP/MSA/CBD)

Address: Parkinson Canada Office

4211 Yonge Street, Suite 316
Toronto, Ontario

Date(s) : Meet the 3rd Wednesday of every month.

Remote video attendance available.

Time : 6:15 pm – 8:00 pm

Contact: 1-800-565-3000

Contact Email :  info@parkinson.ca

By: Parkinson Canada


Toronto – Care Partners 2 (Advanced Stages)
Address : Parkinson Canada Conference Centre
4211 Yonge Street, Suite 305
Toronto, Ontario
Date(s) : Meets the 2nd Tuesday of every month. Year Round.

Time : 6:30 PM - 8:30pm

Contact: 1-800-565-3000

Contact Email : info@parkinson.ca

By: Parkinson Canada



Montreal Facebook Group for PSP/MSA/CBD/LBD patients and caregivers

Location: Click Here

Associated Medical Center: Centre Hospitalier de L’Université de Montreal

By: CurePSP 


Calgary Support Group for PSP/CBD/MSA caregivers

Location: Meeting virtually - contact facilitator for link

Meeting Time: 3rd Saturday of every month from 12:00pm-2:00pm

Facilitator: Kelly Clapham, claphamk@telus.net, 403-803-3307

By: CurePSP 



British Columbia Support Group for PSP/MSA/CBD/LBD patients and caregivers

Location: Contact facilitator for location

Associated Medical Center: University of British Columbia Hospital

Meeting Time: 4th Friday of every month from 10:00am-11:30am

Facilitator: Bob Brett, curepspbc@gmail.com, 604-930-8150

By: CurePSP 


More Across Canada Coming Soon!

Please let us know If you would be interested in facilitating a meeting in your area. We are always in need of new group leaders. We will assist with all the setup and provide support along the way!


About Us:

We are a dedicated Non-Profit Foundation Board made up of compassionate volunteers, each with a deeply personal connection to Atypical Parkinsonism. Our unifying bond stems from shared experiences - the struggle to secure a diagnosis, navigating unfamiliar healthcare landscapes, and grappling with a lack of information and community support. These challenges, felt keenly by many families across Canada dealing with Atypical Parkinsonism, have ignited a fervent passion within us.

Moved by our experiences, our mission is not only to provide support but to ensure that no family in Canada faces the same challenges alone. We focus on conditions like Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), and Corticobasal Degeneration (CBD), all forms of Atypical Parkinsonism often overlooked in mainstream healthcare discourse.

Our vision is to evolve into a National Charity, providing unwavering assistance to every Canadian affected by these conditions. We strive to deliver resources, educational initiatives, and comprehensive support to communities, healthcare teams, and families impacted by these diseases. We believe in forging a well-informed, empathetic community that can truly comprehend and empathize with the struggles associated with these complex conditions.

We stand firm in our commitment that "No One Walks Alone." In every step of this journey, we are here to share the load, provide a guiding hand, and foster a supportive network that ensures no one feels isolated or unsupported. We are the embodiment of solidarity, and in our pursuit of making a difference, we strive to bring light to the shadows of Atypical Parkinsonism in Canada.

No One Walks Alone!

PSP Awareness Shop

Make a purchase with purpose. Each sale supports the fight against Atypical Parkinsonism through the Coleen Cunningham Foundation for PSP Awareness!