Kitchener-Waterloo·Q&A

Guelph illustrator literally paints a picture of what having Parkinson's is like in new e-book

Barbara Salsberg Matthews of Guelph created a free e-book called What Parkinson’s Feels Like because she wants to help people better understand the disease.

Barbara Salsberg Matthews says a 'picture could share thousands of words' and help people understand disease

A cover of a book that says "What Parkinson's Feels Like" with a green monster with multiple arms holding silhouettes of human bodies and a bright red background. A portrait of a woman is beside the book cover.
What Parkinson's Feels Like is a free e-book by Barbara Salsberg Matthews, an illustrator from Guelph, Ont. (Barbara Salsberg Matthews)

Thousands of Canadians live with Parkinson's disease and it can be an isolating experience that few understand. 

Barbara Salsberg Matthews of Guelph wanted to capture what it's like to have Parkinson's in her new, free e-book.

The book, titled What Parkinson's Feels Like, features illustrations based on descriptions that people with Parkinson's gave her about how the disease makes them feel. 

She joined CBC Kitchener-Waterloo's The Morning Edition and host Craig Norris to talk about the book and the experience of putting it together.

The following has been edited for length and clarity. Audio can be found at the bottom of the page.

Craig Norris: What inspired you to put together this book?

Barbara Salsberg Matthews: When I was diagnosed back in 2020 and I shared my diagnosis with friends, I started seeing people looking at me differently. And I didn't like the feeling. 

I found I was being seen through a list of checkpoints. Like, do you have a tremor? Check? 

And I thought, wait a minute, I am not my disease. I'm a person with Parkinson's and I'm beginning to feel unseen here in the mix. 

So in order to help people better understand what it's like to live with this disease, I thought a picture might be the best way to show it because the picture could share thousands of words. 

And being an illustrator, I thought I'll use my talents in this fashion to help other people with the disease connect, and not just amongst family, but amongst clinicians.

Some clinicians expressed that because they don't have the disease, they don't really know what it's like. And so they go by their checklist of symptoms. So it helps build some bridges, build empathy, as well as inform and raise awareness of this disease.

Norris: So it wasn't just how the symptoms of the disease make them feel, it's also how they're treated?

Salsberg Matthews: Yeah, just basically feeling unseen, which is a terrible place to be. And I thought, let's make this not just my story, let's open it up to my Parkinson's disease or PD sisters and brothers all over the world. 

So through Parkinson's Europe, we decided we're going to collaborate together on this project and opened it up to anybody who has Parkinson's disease to share the descriptions. And that was pretty insightful. I learned a lot from the information I was getting.

But I thought, let's take it one step further. I want to pay it forward and give this away for free. That's just the station of life, that's the way I think is: What can I leave behind?

And so I thought I might as well get some donations happening. So we have three donate buttons with the e-book and people can donate to Parkinson's Canada, Parkinson's Europe or PD Avengers, a global grassroots group created by people with Parkinson's, and it's working.

Norris: As a person with Parkinson's, was there anything that you learned in this process that surprised you?

Salsberg Matthews: Well, the nicest thing was, I'm not alone. And the other thing was some of the poignant, very beautiful descriptions and painful, too. It brought some tears to my eyes and also a lot of laughter and it was challenging, too. Some of the images that people presented were quite unique. 

Like one person wrote how Parkinson's feels like a thief robbing me of my happy places, such as walking or even writing or talking. And they would also put it, how can I paint this image of a thief when they said it's like watching a home invasion.

So I had to do some research. What would a home invasion look like? And start to draw it and paint it. And so I learned as an artist how to override some of these very challenging images.

One of the contributors, Dave Clark, in Yorkshire, England, said that Parkinson's is like living life in slow motion. Simple tasks seemed to take forever. Putting your socks on in the morning can be a major challenge. I always wear brightly coloured ones to make me smile. It's very satisfying when you finally manage to pull them up. 

So as an artist, I had to say how am I going to show slow motion? So I made all the people in the background very blurry and focused on the main subject and the colourful socks that he was pulling up, but it stretched me as an artist.

Norris: What do you hope readers take away from this book?

Salsberg Matthews: I really hope that people start talking about this disease because it's one of the fastest growing neurological diseases today. And more and more people getting it, unfortunately, are younger people. 

We have the young onset Parkinson's disease and a lot of women have Parkinson's. There's one person, I highlight her story, and she got the diagnosis at age 31 just as she's starting to want to have a family and in her career and she talks about how Parkinson's makes her feel like a werewolf around the monthly cycle. 

That kind of discussion often we would never hear about before. So now people are becoming more aware that this disease is unfortunately growing more rampant, largely because of pollutants.

[The Parkinson's Foundation says Parkinson's disease is "believed to be caused by a complex interaction of genetic and environmental factors. There is now mounting evidence that air pollution exposure is an emerging risk factor in the development of Parkinson's disease."]

Norris: What's next for you now that the book is actually out there?

Salsberg Matthews: I'm working on many projects and it's all about paying it forward.

I used to be a mime artist. So I'm working with the University of Guelph on a therapeutic mime program to help people with Parkinson's override some of these symptoms. 

And I've been very fortunate that Parkinson's Canada has given me a grant to make self-study therapeutic mime videos that will be given away for free through my YouTube channel in the spring. 

Art usually gets the level playing ground. Going back to the What Parkinson's Feels Like e-book, my hope is to get it out to as many people as possible. It's for free. It's available in French, Spanish, Italian. We're getting German translations and Ukrainian and Japanese will be coming soon, too.

LISTEN | Guelph artist's e-book paints a picture of what life is like living with Parkinson's disease:

Guelph artist Barbara Salsberg Matthews wants to raise awareness and share people’s experience with Parkinson’s disease. Her new e-book What Parkinson’s Feels Like is a collection of illustrations capturing descriptions people with Parkinson's gave explaining how the disease makes them feel.