How to Stay Engaged After Parkinson’s Awareness Month

Mary Beth Skylis avatar

by Mary Beth Skylis |

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Every year in April, Parkinson’s Awareness Month comes and goes, and I find myself wondering if anything has changed. Did the temporary boost of attention spark change in the medical community? Did fundraising efforts make a difference in our pursuit to end this disease? How might we maintain our collective momentum now that the month has ended?

In the same way that New Year’s resolutions are quickly forgotten, I worry that Parkinson’s Awareness Month is an annual event that doesn’t have lasting impact. But I don’t want us to pass it by, causing awareness to become an afterthought in the Parkinson’s fight.

Because of this, I’ve been coming up with ways to stay engaged throughout the year.

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Participate in Parkinson’s events year-round

Organizations like the Michael J. Fox Foundation help to create and maintain momentum by making it easy for the Parkinson’s community to find events taking place near us. Not only does this give us a way to stay focused on Parkinson’s, but it may also boost our sense of community and lead to change.

I recognize that traveling and attending events isn’t always possible. Virtual events can help fill in the gaps by allowing us to engage from the safety of our homes. Some virtual events are geared toward fitness, while others might focus on new research or opportunities for improved care. They also give me an opportunity to connect with others, even while I’m traveling.

Engage in conversation

There are dozens of forums that allow us to engage with the Parkinson’s community on a daily basis. I’m currently a forum moderator for two different Parkinson’s communities, where I get to dive into conversations and ask questions about other people’s experiences. This can be extremely helpful for me in getting a better grip on my dad’s experience with Parkinson’s. Most of the time, I can only speculate about what it’s like to live with a degenerative disease, but engaging with the Parkinson’s community offers me a greater understanding. And sometimes Dad chimes in, too!

Spend more time with Dad

I spend a lot of time with my head in books. I want to explore the latest research and learn about things we can do to delay or stop the progression of Parkinson’s. But at the end of the day, I think it’s more important to spend time with Dad. Going forward, I want to remind myself of my priorities so that I don’t end up living with regrets down the line.

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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