Turning to science to paint a better picture of Parkinson’s disease

When you’re asked about Parkinson’s disease, how do you describe it?

Do you have any particular ways of imagining Parkinson’s that are helpful for you to understand or explain the disorder? Any pictures, diagrams, or frameworks that provide meaningful context?

Or when you’re trying to motivate yourself to exercise (physically and cognitively) or eat a healthy diet, do you envision ways that action could help improve the underlying problem?

If you’re a patient like me, you’ve probably struggled with how to conceptualize what’s wrong.

Although we may read everything, including articles, books, and published papers about clinical trials, somehow the words usually fail to paint a picture and help us understand how Parkinson’s is affecting our brain-body connection.

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In the early days following my diagnosis in 2020, I developed an ugly image of myself modeled after “The Scream,” the famous 1893 painting by Norwegian artist Edvard Munch.

As a Smarthistory article notes, “Conceived as part of Munch’s semi-autobiographical cycle ‘The Frieze of Life,’ [the painting] … is a work of remembered sensation rather than perceived reality.” To me, it depicts Parkinson’s — an agonized character in isolation on a bridge with diminished sensory-motor-awareness capacity.

In a twisted way, “The Scream” seemed to work for me for a while. But eventually, I’m glad to say, I decided it wasn’t productive. For me, it was just too emotional and depressing.

The turning point came after a Rock Steady Boxing class, when one of my classmates gave me his business card and told me to call him anytime for any reason, especially if I ever thought about “taking the bridge” (a story for another day).

I then searched for alternatives instead of focusing on potentially ugly self-images like “The Scream.”

Although the mechanisms of Parkinson’s disease remain mysterious in many ways, I seem to find some of the best answers by learning about science in general. As a patient research scientist, I’ve been inspired by a broad mix of physicists, researchers, physicians, psychologists, and philosophers, from Plato to Ernst Mach to Karl Friston. There’s an amazing history of connecting the physical to the psychical.

How does your brain interact with the world? How do psychology and physics combine to fuel our future?

As I’ve learned and developed a framework to try to make sense of these issues, I’ve filled notebooks with models, concepts, theories, geometry, equations, and pictures. I’ve probably oversimplified ideas in order to understand complicated science. Personal stories and examples from nature seem to convey a certain pattern of how things work.

That’s what this column will be about — sharing stories from a different patient perspective, related to science, to try to better understand what we already know.

There are always more questions than answers. But hopefully, these ideas can help those of us with Parkinson’s take action and change our trajectories, if only by a couple degrees.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.