Maverick Life

‘My Degeneration: A journey through Parkinson's’ deepens healthcare professionals’ understanding of the disease

30 Sep 2024

Parkinson’s disease, the fastest-growing neurodegenerative disorder after Alzheimer’s, affects millions worldwide.

In the US alone, in 2022, nearly 90,000 new cases are diagnosed annually. According to the World Health Organization (WHO), more than 8.5 million people worldwide were living with Parkinson’s in 2019 – a number that has doubled in the past 25 years.

In response to this growing trend, on 2 July 2024, US President Joe Biden signed into law the National Plan to End Parkinson’s Act. This landmark legislation directs the Department of Health and Human Services to develop a comprehensive strategy to prevent, treat and ultimately cure Parkinson’s.

Modelled after the National Alzheimer’s Project Act, this initiative marks the first time federal law has been dedicated solely to the eradication of Parkinson’s, signifying a historic commitment to addressing this growing problem.

While statistics do reflect the magnitude of this disease, they don’t fully convey the deeply personal experiences of those living with the condition and the impact on their families.

As I explored new developments regarding Parkinson’s, I discovered an interesting study called “Use of a Graphic Memoir to Enhance Clinicians’ Understanding of and Empathy for Patients with Parkinson Disease”.

The study focused on Peter Dunlap-Shohl’s memoir: My Degeneration: A journey through Parkinson’s. The findings showed that after reading the book, healthcare professionals significantly improved their understanding of the stigma and emotional burden of Parkinson’s.

Through his vivid illustrations, Dunlap-Shohl brought the reality of living with the disease to life, making the condition more accessible and real to both clinicians and families of patients.

I was inspired by this study and recalled the insights of Dr Oliver Sacks, who believed that every patient had a story worth hearing and described neurological patients as “travellers to unimaginable lands” – lands we might never understand unless we, too, embark on the journey with them. I wanted to learn more about how Dunlap-Shohl used his art to communicate what words alone often cannot – the raw, human experience of living with Parkinson’s.

A visual language for illness

Dunlap-Shohl was diagnosed in 2002, at the age of 43, while working as a political cartoonist for the Anchorage Daily News. Recognising the need to translate complex medical concepts into a more accessible medium, he wanted to create “something that people could look at and see what to expect and know not to panic”.

He used his artistic skills to share his journey in a way that resonated deeply, not only with those diagnosed with Parkinson’s but also their families and healthcare professionals. In blending art and science, Dunlap-Shohl has created a language that connects us to the lived experience of Parkinson’s.

My Degeneration does more than narrate his personal struggle – it visually illustrates the medical and emotional complexities of the disease.

Comics, as Dunlap-Shohl shows, can convey the essence of medical concepts in a way that entire pages of text often cannot. The use of the comic style offers readers the views of what is happening in the characters’ minds.

Dunlap-Shohl emphasises the importance of patients and caregivers gathering as much information as possible about Parkinson’s. This knowledge equips them to make informed decisions and understand the various stages of the disease with more confidence.

Parkinson’s is a progressive disease, meaning that symptoms worsen over time. The loss of dopamine disrupts normal brain activity, affecting not only physical movement but also psychological, emotional, spiritual and social aspects of life. In addition to motor symptoms, the disease impacts cognitive functions, leading to issues such as dementia, mood changes and sleep disturbances.

Dunlap-Shohl illustrates the loss of dopamine in the brain by comparing it to a shrinking resource, helping readers visualise what’s happening on a biological level. These visual metaphors make the intangible effects of Parkinson’s, like depression or sleep disturbances, more relatable and easier to grasp.