Guelph artist Barbara Salsberg Mathews doesn’t consider herself a dancer per se, but she’s always made time to dance. Parkinson’s disease isn’t about to change that.
The visual artist posted a video of her dancing to Twitter last month, sharing that the disease reminds her how precious life is.
“I’m aware of my diminishing energy and time to get things done. So I’ve removed negative people from my life. I focus on today, and what I can leave behind. And if I can hear good music, you can be sure I’ll be dancing to it,” she said.
When she posted the video on Twitter, she said she didn’t expect much from it. But with over 14,000 views, the responses “just kept pouring in.”
Other people from around the world with Parkinson’s were sharing videos of themselves dancing; a Guelph retirement home invited her to come dance with residents who have Parkinson’s.
She was also approached by one of the co-founders of the PD Avengers, international Parkinson’s group, to help develop a dance-based campaign to raise awareness about the disease.
Dancing is something anyone, at any age, with any disability can do, she said.
“When I dance, I no longer see myself as a person with Parkinson’s. I just dance,” she said.
Salsberg Mathews was diagnosed with Parkinson’s in January 2020, a progressive disease that causes uncontrollable movements like shaking and stiffness. It typically leads to difficulties with walking and talking and making facial expressions.
Though she had tremors long before then, she had convinced herself it was just a pinched nerve or an essential tremor.
All it took was 15 minutes for the neurologist to determine she had Parkinson’s.
“It was a horrible shock,” she said. “I had not visualized myself as an old, shaky woman. My whole future was changed in an instant.”
A tough diagnosis for a visual artist: she couldn’t paint like she used to, struggling with large-scale pieces and using fine paint brushes. There is only about a two-hour window where she can paint before her pills stop working and the tremor in her hand returns.
To make matters worse, the neurologist put her on lots of pills – too many, too fast, throwing her into a chemically-induced depression.
“I was losing memory, I was very depressed, and I started to believe I was dying.”
She was able to find another neurologist and something shifted: she felt empowered.
“I had a new mission in life ... I’m going to do what he should have done, and make it my life mission to help people with Parkinson’s live a quality day-to-day life in any way I can.”
She’s since “donated (her) body” to numerous scientific studies, with the goal of helping researchers find a cure.
“But if not a cure, then some ways to improve quality of life. That’s an important goal too,” she said. “I’m 64. I’m only on this earth for X more years. So it’s all about what I can leave behind, and that gives me great joy.”
A big part of that has been teaching others to use miming techniques to override Parkinson’s symptoms.
Salsberg Mathews began miming when she was 16, studying the craft in Paris, France.
“I loved it,” she said. “It was magic to me.”
She is primarily known as a visual artist, and said miming has always helped her with her art.
“Because I could put myself into that position or make the facial expression, and look at myself in the mirror. Then I could draw it,” she said.
These days, it’s taken on a different kind of magic: helping her override her Parkinson’s symptoms.
“It’s helping me heal. Instead of walking the way my body wants to walk, I can walk more normally. I’m more aware,” she said.
It all started with a book she read, which recounted the story of a man with Parkinson’s who taught himself to walk 'normally' by breaking the movements down individually, slowly at first, and then faster and faster until his gait appeared normal.
She realized he was essentially doing mime, and thought she could teach herself to move normally again using mime methods.
At the time, her right foot was dragging, her right arm wouldn’t move, and her posture was sluggish. Now, after using these methods, she walks normally, with a straight back, a foot that doesn’t drag and an arm that swings.
Plus, she uses imagery. For instance, to sit or stand up straight, she imagines she’s swallowed a coat hanger that’s sitting in her chest.
And when it started working for her, she realized she could teach other people as well, and has been busy raising awareness about the disease, and designing and delivering workshops and presentations on how to use miming to override Parkinson’s symptoms.
Through this process she found Rob Mermin, the founder of an international touring youth circus called Smirkus. Mermin, too, has Parkinson’s, and has been using mime and other circus techniques to override the symptoms.
Salsberg Mathews has adopted some of his circus techniques – though she said their principles are slightly different since they come from different schools of mime, his being more formal and hers more experimental.
One of his techniques is to have people throw and catch plastic grocery bags for play, balance and agility, a method Salsberg Mathews has employed in her own workshops since.
She said at first, the group was slumped, but once they started tossing the bags, they would stand up tall.
Another method is to have participants walk while balancing a peacock feather in their hands.
Often their tremors stop and they don’t drag their feet, “because they’re shifting their focus and creating a new neurological pathway in the brain” by focusing on the feather, she said.
Miming has helped her maintain her posture, her facial expressions; to keep from spilling a glass of water when she holds it.
Visualization is a big component of this technique, she said. So she visualizes what it’s like to pick up a glass of water, walk across the room with it, and take a sip, before doing it in real life.
“You can do that with a number of things, like all the things you do everyday, like getting dressed, putting on your shoes, preparing a meal, or carrying an object across the room. Little things.”
Art-wise, alterations like these have helped as well – as well as using different glazes, working on small-scale pieces and using a tool to stabilize her hand. But her main focus right now is sharing what she's learned.
She’s finishing a research paper with an MSc student, Muhammad Kathia, on the impact mime can have on people with Parkinson's.
“Parkinson’s has no cure, and it’s progressive. I know since I’ve been diagnosed, things have gotten harder, worse. I know where this is taking me, and I don’t want to lose this knowledge of mime.”
So she wants to make sure that knowledge is shared, so others can use it “as a therapeutic tool to help people with Parkinson’s override many of these annoying symptoms. And it really is working.”
“I’m not my disease: I’m a person with Parkinson’s,” she said. “And while I still have the energy and motivation to spread the word about using mime as a therapeutic tool to help people with Parkinson’s disease, I intend to do this.”