What it feels like to have Parkinson’s is globally described through Guelph’s Barbara Salsberg Mathews’ new ebook she illustrated and it was released today.
Through descriptions from across the world Salsberg Mathews painted and used mixed media like watercolour and Photoshop to create illustrations to create What Parkinson’s Feel Like. Underneath the illustrations are people’s thoughts on what Parkinson’s feels like for them, including their names and when they were diagnosed.
Salsberg Mathews was diagnosed in 2020 with Parkinson's. “Parkinson’s is like a grey mist, floating towards me from behind to take me down. Sneaking up in an insidious way, trying to put me to sleep, roll off to the corner with the dust bunnies,” read Salsberg Mathews’ description in What Parkinson’s Feels Like. The illustration paired with it is of a person standing on rocks as a wave starts to roll over them.
This is every morning for Salsberg and she purposefully visualizes the wave coming over her shoulder so she can carry on. “Because that’s what Parkinson’s does. It does some terrible things … cognitive as well as physical,” said Salsberg Mathews, in an interview with GuelphToday.
In the illustrator’s note in the book Salsberg Mathews expressed her gratitude to those who shared their descriptions for the book. “Your descriptions reminded me that I’m not alone. This book could not have been made without sharing your lived experiences as a person with Parkinson’s. Thank you,” she said in the illustrator's note in the book.
“I purposely made this book because it's to educate others and raise awareness of how the disease presents itself, and more importantly, we are not the disease. We're people living our best lives with the disease,” said Salsberg.
Parkinson’s Europe, an organization that works with people with Parkinson’s in Europe and advocates, raises awareness and works with other Parkinson’s organizations, published the book alongside Salsberg Mathews. She was able to ask what Parkinson’s feels like, through Parkinson’s Europe, to get answers from those with Parkinson’s.
She wished she could have made illustrations of all the descriptions but her hand would have “run out of gas” as she put it, meaning when her medication wore off she had to pace herself while creating, she said in her illustrator’s note in the book.
The ebook is available to download online for free and there is an option to donate to Parkinson’s Europe, Parkinson Canada and PD Avengers, to help raise awareness and fund research. It’s available in English, French, Spanish, Italian and more languages like Ukrainian will become available later on.
