A powerful new illustrated book, What Parkinson’s Feels Like, has been released to help build empathy and raise awareness about the lived experience of Parkinson’s disease. Created by artist Barbara Salsberg Mathews, who was diagnosed with Parkinson’s in 2020, the book translates vivid descriptions from people with Parkinson’s around the world into compelling, mixed-media illustrations.
Supported by Parkinson’s Europe, the book is a heartfelt reflection on the multifaceted impact of Parkinson’s beyond its visible symptoms. As Barbara explains, “Too often, people with Parkinson’s are reduced to their tremors or physical signs. Through art, this book explores the deeper emotional and physical realities—fatigue, frustration, disrupted sleep, and even identity shifts.”
Barbara expressed her gratitude to those who contributed their experiences, noting how their descriptions reminded her that she’s not alone. “Creating these illustrations, I had to pace myself as my drawing hand would ‘run out of gas’ when my meds wore off. Your stories challenged me as an artist and helped strengthen my work. This book wouldn’t exist without your courage to share.”
Speaking about the book, Russell Patten, Director General at Parkinson’s Europe commented:
“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.”
Available for download in four languages, with additional translations arriving soon, What Parkinson’s Feels Like is offered in exchange for a donation. Proceeds will go toward raising awareness and funding vital research aimed at improving the lives of millions affected by Parkinson’s worldwide.
This book is not just for patients and caregivers but also for clinicians, offering an opportunity to gain a deeper understanding of their patients’ inner worlds and forge more meaningful connections.
Dr Jane Alty, Consultant Neurologist at Royal Hobart Hospital and University of Tasmania noted:
“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.”
More information about the book and how to download your copy and make a donation can be found here.
Disclosures: This short article was prepared by touchNEUROLOGY. No funding or fees were associated with the publication of this article.
