An interview with Anna Bendas from the Canadian Open Parkinson Network: Exploring Parkinson’s disease through research and dance on January 16, 2024 by George Ackerman, Ph.D, J.D.
Biography
Born and raised in Ukraine, my family moved to Canada in 2009. Since then, it was my dream to make Canada my home by combining Ukrainian and Canadian values in my everyday life. I graduated from McGill University with a bachelor’s degree in psychology. My undergraduate studies allowed me to enter an incredible world of scientific research with focus on improving health and well-being. After working 5 years as a laboratory manager, I continued my graduate studies in the field of management. With an MSc in management, I started my new role as a National Manager for Canadian Open Parkinson Network.
Can you tell me more about your organization?
Canadian Open Parkinson Network focuses on efficiently supporting Parkinson’s research to ultimately improve the lives of those living with the disease. Funded by Brain Canada and Parkinson Canada, C-OPN seeks to dramatically enhance our capacity to uncover answers with the goal to deliver best personalized treatments and services to peoples with Parkinson’s disease.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I was introduced to the Parkinson’s community in 2014 as a young admirer of psychology and alternative therapies. My mother, who is a psychiatrist and a certified dance therapist, brought me to a class of dance movement therapy with Parkinson’s patients, and for two hours, we shared an incredible moment filled with music and dance. I immediately fell in love with this community and continued volunteering with them, eventually becoming a specialized dance teacher. As this disease targets movement, seeing patients improve through dance and music is truly what makes it all worth it.
What type of goals do individuals with Parkinson’s have when working with you?
Parkinson’s disease can be very debilitating and isolating. Therefore, my primary goal is to increase awareness and patient’s willingness to join help groups. Working closely with Parkinson’s patients, I make sure to convey the importance of community to them.
What type of training and how long are the programs?
Canadian Open Parkinson Network seeks to recruit patients across Canada to improve the diversity and increase the ability to personalize treatments. Our network has sites across Canada to facilitate access to patients.
Parkinson en movement, a non-profit organization, offers diverse classes (dance-movement, singing, art and table-tennis) to people living with Parkinson’s disease in Montreal, Canada. They also offer a training program for those who are interested in teaching classes for people living with Parkinson’s disease.
What effect can it have on an individual with Parkinson’s?
Several research studies demonstrate a positive result of dance for people with Parkinson’s disease as their motor control abilities and mood are improved. Whereas participating in an open science research network allows patients to contribute to an overarching goal of improving research in relation to Parkinson’s disease.
What would you like to see as a future goal for your programs?
Canadian Open Parkinson Network seeks to establish a platform where participants living with Parkinson’s disease and related disorders are connected with scientists across Canada to participate in research studies and trials. This initiative will accelerate knowledge and understand of this multifaceted disease and facilitate large-scale projects.
What events do you participate in?
Various scientific conferences and an annual walk dedicated to spread awareness of Parkinson’s disease (Parkinson’s journey).
How does this also assist the caregivers?
Canadian Open Parkinson Network seeks to promote close collaboration with caregivers in field of Parkinson’s disease and related disorders. Only through collective efforts, we can improve and make change.
How can someone get in touch? What is your website?
Canadian Open Parkinson Network: https://copn-rpco.ca/
Parkinson en movement: https://www.parkinsonenmouvement.org/en/
How can others also become advocates for awareness?
If people are interested in joining Canadian Open Parkinson Network they can contact me through email: national.manager@copn-rpco.ca
If you could add any questions to this interview that you may want others to learn about, what would the question(s) be?
How do you make sure that your goals are relevant to the needs of people living with Parkinson’s disease?
In your opinion what is the key to effective advocacy?
As an advocate, we often seek to dominate the conversation and demonstrate our eagerness by staying in the spotlight. Personally, I prefer giving voice to those who remain silent. I believe it is possible to spread awareness by doing more behind the curtains and promoting people who have difficulties seeking that spotlight themselves.
How can we better fundraise to support a cure for Parkinson’s?
Personal statements and individual stories are key to achieving better funding support. It is much easier to relate to another human being who shares their personal stories.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Of course, dance and music are key activities in my day-to-day life. Multiple research studies have shown significant improvements in mental health in those who listen to their preferred music on a daily basis.
Why should people who don’t have Parkinson’s care about this?
More than 100 000 Canadians live with Parkinson’s and 30 more are diagnosed every day (https://www.parkinson.ca/about-parkinsons/#:~:text=Parkinson’s%20is%20a%20complex%20brain,more%20are%20diagnosed%20every%20day.). Understanding this disease and learning about it can help reciprocate to people who live with it.
Have you had any family members or relatives affected by Parkinson’s disease?
No, my family members are not affected by Parkinson’s, but many family friends are Parkinson’s patients.
If you had one song that would tell us more about you or represent your life, which song would it be?
Alba (feat Sofiane Pamart) – without lyrics this music piece moves me to tears every time I listen to it.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
We stand BIG and loud together.
(LSVT LOUD and LSVT BIG are therapeutic approaches that address two different issues in Parkinson’s: LSVT LOUD is designed to help improve speech and voice function, and LSVT BIG aims to help people increase the size of their moments to improve balance and daily function.)