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.
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.
Reprinted from: Dunlap-Shohl P. My degeneration: A journey through Parkinson’s.University Park, PA: The Pennsylvania State University Press; 2015
My Degeneration goes back 13 years, when Dunlap-Shohl was diagnosed.
At first, he felt as if his world collapsed: it is like having a meteor strike your world, reducing it to ash and smoke. Using his special skill, Dunlap-Shohl illustrates the fear he felt at his diagnosis. He could only hear three words: Incurable, progressive and disabling.
Reprinted from: Dunlap-Shohl P. My degeneration: A journey through Parkinson’s.University Park, PA: The Pennsylvania State University Press; 2015
Another medical term frequently used is akathisia, clinically defined as “an inner sense of restlessness accompanied by an intense desire to move”, often manifesting in the legs and compelling a need for movement. While this definition provides an intellectual understanding, it remains somewhat abstract until we see it through the lens of lived experience.
Dunlap-Shohl portrays akathisia with a striking image: a man standing on an endless road, representing the relentless urge to move.
The image captures the paradox of the condition – where the mind demands action, yet the body refuses to comply. The paradox and irony portrayed in the image bring the condition to life in a way that words alone cannot. We not only see, but also feel the restlessness, transforming the medical definition into something deeply human and experiential.
Reprinted from: Dunlap-Shohl P. My degeneration: A journey through Parkinson’s.University Park, PA: The Pennsylvania State University Press; 2015
Dunlap-Shohl vividly describes how “Parkinson’s touches every aspect of your life. It affects your sense of smell, your sense of balance, your ability to walk, to work, to speak, to taste food, and when and what you eat”.
In living with Parkinson’s, Dunlap-Shohl draws a powerful parallel to Herman Melville’s Moby-Dick, in which the harpooners throw their weapons into the ocean, each attached to a long, coiled rope that quickly unravels when the harpoon strikes the whale.
Reprinted from: Dunlap-Shohl P. My degeneration: A journey through Parkinson’s.University Park, PA: The Pennsylvania State University Press; 2015
This rope, while essential for securing their catch, also poses a significant danger. If a harpooner or crew member isn’t careful, the fast-moving rope can wrap around their body or limbs, pulling them overboard or crushing them in its powerful grip.
Similarly, for those living with Parkinson’s, the disease can’t be ignored or wished away. Much like the rope, Parkinson’s is an ever-present threat. By recognising its presence and learning how to deal with the unpredictable, those living with Parkinson’s can face the disease head-on, with courage and resilience.
Dunlap-Shohl stresses the importance of exercise in managing Parkinson’s.
While many are reluctant, he highlights its effectiveness in addressing symptoms like falls, freezes, stress, depression, balance, posture and even constipation. Exercise is a simple, low-cost way to improve both physical and emotional well-being.
He notes: “What is truly frightening is what you don’t know: where the whale is, what it will do next.”
Reprinted from: Dunlap-Shohl P. My degeneration: A journey through Parkinson’s.University Park, PA: The Pennsylvania State University Press; 2015
When I spoke to him, Dunlap-Shohl shared how significantly his wife Pam and son Wiley supported him on his journey with the illness.
“They have been my greatest support through Parkinson’s. At one point, I was so consumed with the challenges of the disease that I began to believe they’d be better off without me. I foolishly made plans to end my life, thinking it would spare them. But Pam knew better.
“She reminded me, in no uncertain terms, of the terrible void my absence would have, especially on Wiley.
“I realise now how harmful and mistaken that impulse was, and I’m forever grateful that Pam stepped in when she did,” he says.
“The fact that I am slow and unsteady doesn’t matter to him,” Dunlap-Shohl said of Wiley.
“Despite my limitations, Wiley sees beyond Parkinson’s. Our bond, built on shared passions, has only grown stronger. Looking back, I am deeply grateful for these years with them.”
Reprinted from: Dunlap-Shohl P. My degeneration: A journey through Parkinson’s.University Park, PA: The Pennsylvania State University Press; 2015
What is it like to gradually lose control over your body while trying to preserve the richness of your inner life?
Pain, suffering and resilience are sometimes difficult to express in words alone. As the poet Philip Larkin once wrote:
“Suffering is exact. There is nothing to be said.”
His graphic novel, My Degeneration: A Journey Through Parkinson’s, and the documentary Matter of Mind: My Parkinson’s allow us to witness the overwhelming emotional experience that words alone may not fully convey.
Yet, Dunlap-Shohl doesn’t see life with Parkinson’s as a battle.
To him, the traditional metaphor of “fighting a battle” is not only a cliché but deeply flawed. Since Parkinson’s is relentless and unbeatable, he views living with the disease as a delicate performance, similar to walking a tightrope. This performance requires grace, courage and unwavering support. The key question isn’t whether we face struggles, but how we choose to deal with them.
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