Reflecting on Several Years of Writing About Parkinson’s Disease

Mary Beth Skylis avatar

by Mary Beth Skylis |

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I published my first column with Parkinson’s News Today in April 2019, confiding in readers about my dad’s struggle with Parkinson’s disease. Since then, I’ve written more than 60 columns, telling stories and sharing information I’ve learned. I’m rather proud to have looked Parkinson’s in the eyes so many times.

While writing several hundred words twice a month may not seem like a huge commitment, those little chunks of thought can really add up over time. For more than three years, I’ve been researching, working, listening, attending doctors’ appointments, and asking my dad about his relationship to Parkinson’s. And while many of our shared moments are small ones, when collected, they seem to amount to something much bigger — a better understanding or greater respect for our journeys, perhaps.

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Sometimes I feel like I’m talking in circles, saying a lot of things but going nowhere. Other times I feel like I’ve made tremendously important discoveries, which I ultimately share with my dad and my readers.

It’d be nice to think that I have this whole Parkinson’s thing figured out — that years of research and attention have improved my comprehension of my dad’s journey. But the truth is that time seems to make little difference. No one completely understands Parkinson’s disease. It’s like an onion that only grows larger as you peel back each layer.

Over the past few years, I’ve been inspired by, disheartened by, motivated by, and in awe of the Parkinson’s community. I don’t know whether I’d fight Parkinson’s with the same determination and commitment that people like my dad do.

And although Parkinson’s is notorious for taking away more than we can imagine, I’ve learned that it gives us things, too. It gives the community motivation and empathy, as cuddling up with our new, painful realities enables us to feel others’ pain when they confide in us. And the disease has given me a greater understanding of my dad.

Reflecting on our struggles provides an opportunity to remember how far we’ve come. And while difficult journeys still lie ahead, it’s important to occasionally pause and look at the progress we’ve made.

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.


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