A new illustrated book inspired by people with Parkinson’s around the world
Artist Barbara Salsberg Mathews, who was diagnosed with Parkinson’s in 2020, has collected descriptions of what Parkinson’s feels like from people living with the condition, and transformed these into a new book of illustrations.
What Parkinson’s Feels Like was created to build empathy, inform and raise awareness about Parkinson’s.
Parkinson’s Europe is proud to support What Parkinson’s Feels Like.
You can download the book for free below, or purchase a hard copy on Amazon.
We would be hugely grateful if you could show your support by donating whatever you can to Parkinson’s Europe, Parkinson’s Canada or PD Avengers below.
Download the book and donate
What Parkinson’s Feels Like is available to download in eight languages:
English Español Français Italiano Deutsch українська (Ukranian) Русский (Russian)
You can also download individual prints of illustrations from the book.
Download individual prints
Buy the book on Amazon
Barbara has also created physical hard copies of the book in paperback format, which you can purchase on Amazon:
Buy on Amazon UK Buy on Amazon US Buy on Amazon Canada
Donations
The work we do to support the millions of people with Parkinson’s depends on your generosity.
Parkinson’s affects millions of lives around the world, robbing individuals of their ability to move, speak, and live freely. By giving us a small donation in exchange for this book, you’ll help our organisations to raise awareness and fund critical research that could one day end Parkinson’s.
Please donate below:
Show your support for the book - donate to Parkinson's Europe
Please give whatever you can. The work we do to support the 1.2 million people with Parkinson’s in Europe depends on your generosity.
Other places to donate
Barbara is grateful to two other organisations, Parkinson Canada and PD Avengers, for their support in promoting What Parkinson’s Feels Like:
Donate to Parkinson Canada
Parkinson Canada empowers the Parkinson’s community through tailored programs and services, innovative research and raising the voice of all Canadians impacted by Parkinson’s.
Donate to PD Avengers
PD Avengers are a global alliance of people with Parkinson’s, their partners and friends, aligned to add urgency to the cause of ending Parkinson’s through wellness, advocacy and research.
More about the book
Barbara 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 has collected dozens of descriptions of what Parkinson’s feels like from people with Parkinson’s in ten countries. 27 of these descriptions have been incorporated into the book across 22 different illustrations.
Barbara describes the creation process:
“I’m very grateful to all of the people with Parkinson’s who took the time to share their descriptions of what Parkinson’s feels like. To create these illustrations, I used mix media including watercolour, ink, acrylic paint, and Photoshop. Your descriptions reminded me that I’m not alone. Many of your images challenged me as an artist which helped make my work stronger. This book could not have been made without sharing your lived experiences as a person with Parkinson’s. Thank you.”
More about the illustrator
Barbara Salsberg Mathews wrote and illustrated children’s books, published by Annick Press. She studied mime in Paris, France, and had a touring mime company. Barbara taught visual and dramatic arts in high schools for over 25 years. Since retiring, Barbara lives with her husband in Guelph where she does volunteer work and continues to create art. In 2020, Barbara was diagnosed with Parkinson’s. It took her some time to accept this diagnosis; she made sense out of it by realising that she is not her disease. She’s a person with Parkinson’s who aims to live life fully and give back to our global community through the arts. Barbara is now using mime as a therapeutic tool to help others living with Parkinson’s manage their symptoms.
Download individual prints from the book
As well as downloading the entire book as a PDF, you can also download individual prints of any of the book’s illustrations as high-quality PDF.
These prints are provided free of charge, and if you can spare a donation, we’d be hugely grateful.
Testimonials
“We’re delighted to be collaborating with the immensely talented Barbara Salsberg Mathews on What Parkinson’s Feels Like. This ebook is a perfect reflection of the work we do: giving a voice to people with Parkinson’s across Europe, and raising vital awareness about the condition.”
Russell Patten, Director General of Parkinson’s Europe
“Despite its enormous impact on people living with Parkinson’s, there is a lack of awareness of the condition in our society. While it’s important to raise awareness and understanding of Parkinson’s, we’re also working to highlight the incredible resilience and determination we often see in our community. We’re so inspired by the many people who challenge the stigma of life with Parkinson’s, and who openly share their experiences, including in this book.”
Karen Lee, President and CEO, Parkinson Canada
“This book is an incredible resource capturing what it really feels like to live with Parkinson’s. Too often, people with Parkinson’s get reduced to visible symptoms, like tremors, as others search for clues that match a checklist. But Parkinson’s is so much more than that. Barbara’s art dives deep into the emotional and physical realities we experience—the chaos, the loss of control, the relentless fatigue, the frustration of disrupted sleep, and even the struggle with shifting identities.
Her illustrations hit home. There’s a puppet struggling to move under invisible strings, perfectly capturing that feeling of not being in control of your own body. Another piece shows someone mopping endlessly, a perfect metaphor for the way everyday tasks can feel like an uphill battle. These images aren’t just about Parkinson’s symptoms—they’re about us as people trying to live our lives through this condition.
This book invites everyone—clinicians, care partners, and loved ones—to step into our world for a moment and really see us. It helps shift the focus from what’s wrong with us to who we are. It’s not just about recognizing the condition—it’s about recognizing the person.”
Larry Gifford, President, PD Avengers
“Looks amazing! So powerful to see the illustrations all together.”
Richelle Flanagan, Dietitian, co-founder & CEO My Moves Matter, a digital app
“I am so amazed to see who you are Barbara and how incredibly brave you are to express your talent in ways to portray a small sliver of the world in living with PD. I am honored to be collaborating with Parkinson Europe, Parkinson Canada, Parkinson’s UK and more so we will keep rallying with urgency.”
Dr. Diane Stephenson, Executive Director at Critical Path Institute, Tucson, AZ, USA
“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 of these would be very powerful training for us clinicians too.”
Dr. Jane Alty, Consultant Neurologist – Royal Hobart Hospital and University of Tasmania
“While people often associate Parkinson’s with visible symptoms like tremors, there’s so much that goes unseen. This ebook gives language and vivid images to what it feels like to live with this disease in body and mind. Not only does it make people with this disease feel seen, but it’s a powerful resource for their non-Parkinson’s circle, helping them understand what life with Parkinson’s is really like.”