An interview with Barbara Salsberg Mathews from Mime Over Mind on September 17, 2023 by George Ackerman, Ph.D, J.D.
Biography
BARBARA SALSBERG MATHEWS wrote and illustrated two children’s books published by Annick Press when she was a teen. She studied mime in Paris, and had a touring mime company. Barbara graduated from Ontario College of Art [OCADU], and earned her MEd. Since retiring as Head of Art from Toronto Board’s Northern Secondary School, Barbara now lives with her husband in Guelph where she does volunteer work and continues to make art.
Can you tell me more about your advocacy?
She recently co-created, with Richelle Flanagan, the Dopamine Dance Against PD, to raise awareness of PD. The idea for this grew from a tweet Barbara made of herself dancing, titled, ‘Parkinson’s can’t stop me from dancing!’ This went viral with over 20K views. She now has developed the use of mime as a therapeutic tool to help people with Parkinson’s manage symptoms.
In 2020 Barbara was diagnosed with Parkinson’s disease. She’s now using mime as a therapeutic tool to help others living with Parkinson’s to manage the symptoms.
I was sent to a very dangerous and uninformed neurologist. He never did titration when prescribing me meds, gave me nighttime meds in the day – giving me awful side-effects, constantly pressured me to rate him on a rate my doctor website. I launched a formal complaint, and his license has now been suspended. I wrote about these experiences here: https://www.womensparkinsonsproject.com/stories/why-does-my-hand-want-to-play-piano
What type of goals do individuals with Parkinson’s have when seeing your advocacy?
Aside from donating my body to science while I’m alive (I’ve been on over 8 PD research studies), I’m very involved with my work on Mime Over Mind, hopefully my PD sisters and brothers will apply these tools to be able to override many of the annoying physical symptoms of Parkinson’s. I’m fortunate to have some very experienced and talented researchers on our team at University of Guelph. You can read more about our project here: www.guelphtoday.com/local-news/new-u-of-g-course-teaches-how-mime-can-help-manage-parkinsons-7403797 A photo of me and of Richelle Flanagan at this past World Parkinson’s Congress.
What type of training and how long are the programs?
We are in phase 2 of this project. After I’ve taught a series of workshops to people with PD, this fall the University of Guelph is having me train trainers to continue sharing mime as a therapeutic tool to overcome many annoying PD symptoms. This winter, me and these new trainers will in turn work with people with PD in the early stages of this disease. Dr. Lori Anne Vallis and Dr. Rebecca Barnstaple will lead the research on how Mime can improve: gait and balance.
Dr Rebecca Barnstaple and myself, the 1st day we are teaching our course, Mime Over Mind at the University of Guelph.
What effect can your advocacy have on an individual with Parkinson’s?
I hope that this work can give people with PD a better day to day quality of life.
What would you like to see as a future goal for your advocacy?
Bring greater awareness of mime as a therapeutic tool, bringing it to people everywhere – as it is simple, easy to apply and can have helpful results for little cost.
PD Mime workshop with participants from Hamilton, Ontario’s PD Support Group
What events do you participate in?
Helped create and co-launch the Dopamine Dance Against PD challenge. Do presentations, keynotes, and workshops on PD Mime and the dancing tweet that launched over 20K views.
How does your advocacy also assist caregivers?
Encourages them to get involved and learn the PD Mime tools to better support their care partners.
How can someone get in touch? What is your website?
How can others also become advocates for awareness?
Get informed via local PD Support Groups, read information from good sources such as Michael J Fox, Davis Phinney Foundation and join us and get involved with PD Avengers.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I was diagnosed with Parkinson’s disease in January 2020. It took me some time to accept this diagnosis. I finally made sense of this by realizing that I am not my disease. I am a person with Parkinson’s, and I aim to live life fully. While I still have the energy and motivation, I’m committed to spreading the word about using mime as a therapeutic tool to help people with Parkinson’s disease. I don’t do this for fame or fortune, as I don’t care about that. For me, it’s all about what I can leave behind, hopefully improving the quality of day-to-day lives for people like me, with Parkinson’s.