A new e-book, What Parkinson’s Feels Like: a collection of illustrations inspired by descriptions written by people with Parkinson’s around the globe, has been created by Canadian artist with Parkinson’s Barbara Salsberg Mathews to raise awareness and share with others what it’s like to live with the condition.
Free to download, the e-book is the result of a question Barbara posted to her social media followers with Parkinson’s earlier this year: what does Parkinson’s feel like for you? Barbara then created several artworks conveying the essence of the responses she received using mixed media including watercolour, ink, acrylic paint and Photoshop.
Describing what she wanted to achieve with the book, Barbara says: “As [cognitive psychologist, musician, and author] Daniel Levitin wrote, ‘The power of art is that it can connect us to one another and to the larger truths about what it means to be alive and what it means to be human.’ So, I used my skills as an illustrator, especially while I can still draw and paint, to capture what Parkinson’s really feels like.”
Barbara found the process of working on the illustrations profoundly meaningful.
“At first, I had thought we’d create a comic book with a few drawings per page. But the descriptions submitted were often quite complex and deeply moving. These required more time to capture the visuals that I saw in my imagination, all the while honouring the contributors’ voices.”
Sometimes Barbara’s Parkinson’s symptoms slowed her down, with fatigue forcing her to pace herself. “At times, I pushed my weak, formerly dominant hand and arm to convey what was in my head, as often my body ran ‘out of gas’ when my meds wore off. But I got used to telling myself, ‘I can still draw and paint, it just takes me longer.’”
Barbara also believes that working on the project improved her art. “Many of the submissions challenged me as an artist, which helped make my work stronger. For example, Dave Clark, one of the presenters of podcast 2 Parkies in a Pod, described living life in slow motion. I wanted to suggest a fast-moving world in contrast to the slow-moving person in my artwork. So, I blurred the people in the background.”
Seeing their thoughts converted into art struck a chord with those who sent their descriptions of Parkinson’s to Barbara.
Those sent in by Richelle Flanagan, an Irish dietitian with Parkinson’s and founder of the My Moves Matter app, and Dr Soania Mathur, a Canadian Parkinson’s advocate with Parkinson’s, were merged as follows: “Parkinson’s feels like an unwelcome guest who is still in my house when I get home and I have to look after them. They try holding me back as I do my best to face the challenges that are inevitable.”
Barbara’s resulting painting, of a woman coming home to find a man sitting at her table expecting dinner, provoked this response from Richelle: “Mr Parkinson is feeding on my dopamine neurons. I look forward to the day that I can stop feeding him and boot him out!”
Paqui Ruiz, of the Spanish association of women with early onset Parkinson’s Con P de Parkinson, likened having Parkinson’s to being on a rollercoaster – a view shared by Ben Stecher and Judy Furman: “Parkinson’s feels like a never-ending roller coaster ride of emotions, with ups and downs, never knowing what’s around the next bend.”
In response, Barbara drew a group of people on a never-ending rollercoaster. Commenting on the picture, Paqui said: “This is how I think the disease develops. There is a twisted side and there are better sides; it’s the duality of our body, how we feel, how we are seen. Our essence as a human being is something that neither this nor any other disease can take away from us.”
Barbara says: “Reading these descriptions reminded me that I’m not alone with these symptoms. I could never have created this booklet without the descriptions of all those who shared their lived experiences with Parkinson’s. I’m most grateful to my fellow Parkinson’s sisters and brothers.”
You can download “What Parkinson’s Feels Like” (as well as free copies of the illustrations from the book) here, where you’ll also have the option to donate to one of three Parkinson’s charities: Parkinson’s Europe, Parkinson Canada or PD Avengers.
