An image illustrating the answer to "What does Parkinson's feel like?"

The author of a new Parkinson’s comic book is calling for people with the condition to submit descriptions answering the question “What does Parkinson’s feel like?”, with their answers set to be turned into illustrations for the book.

Barbara Salsberg Mathews, a Canadian artist who was diagnosed with Parkinson’s in early 2020, is behind the new comic book, called What Parkinson’s Feels Like: More Than 40 Symptoms, which she hopes will build empathy, inform and raise awareness about Parkinson’s. She explains:

“This project came about after many people with Parkinson’s noted that when they shared their diagnosis, often family, friends and clinicians reacted by looking at us for a checklist of symptoms (e.g. a hand tremor). This often left people with the condition feeling unseen as a person. But we are much more than our symptoms, we are people with Parkinson’s aiming to go about living our best lives.”

Barbara shared a post to the social media platform X (formerly Twitter) asking her followers “what does Parkinson’s feel like for you?”, and received some creative and insightful responses. One user, @SethGillman, from the UK, responded:

 


Barbara has already transformed Seth’s description into an illustration for the book as an example of how the book can bring the truth of what Parkinson’s feels like to life:

“Parkinson’s feels like I’m on 1% and can’t find my charger” Seth Gillman. Illustration: Barbara Salsberg Mathews

Another submission provided by Nina, from Berlin in Germany, described Parkinson’s as:

“Sometimes when I look calm on the outside, there’s a storm going on inside me which people can’t see.”

Barbara has turned the above quote into this powerful illustration for the new comic book:

An image illustrating the answer to "What does Parkinson's feel like?"
“Sometimes when I look calm on the outside, there’s a storm going on inside me which people can’t see.” Nina. Illustration: Barbara Salsberg Mathews

The proposed comic book has already had enthusiastic backing from clinicians who work with people with Parkinson’s. Professor Jane Alty, neurology staff specialist at the Royal Hobart Hospital, University of Tasmania wrote:

“I’m a very visual learner and these images really help me understand the personal perspective of living with Parkinson’s. I think a book or short movie of these would be very powerful training for us clinicians too.”

Barbara hopes to make What Parkinson’s Feels Like: More Than 40 Symptoms available free to download in as many languages as possible to help people around the world understand what it’s like to live with Parkinson’s. When published, the book will be available to download on the Parkinson’s Europe website, with the option to leave a voluntary donation to Parkinson’s Europe, Parkinson’s Canada or other Parkinson’s charities.

Barbara previously created another comic book during the coronavirus pandemic called Kid Covid Fights Back, which helped to explain why Covid prevention measures were important in a gentle and fun way to alleviate children’s fears about the pandemic. Available in five languages and free to download, it helped to raise $500 in donations for a local arts council.

Call for submissions: what does Parkinson’s feel like for you?

If you would like to offer your own description of what Parkinson’s feels like, to be turned into an illustration for the book, please either:

Find more information about Parkinson’s and the symptoms of Parkinson’s