Finding Support and Understanding Within the Parkinson’s Community

Mary Beth Skylis avatar

by Mary Beth Skylis |

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When my dad, Jim, was diagnosed with Parkinson’s disease in 2013, he fought the idea of pursuing Parkinson’s-specific exercise classes and seeking out others in the Parkinson’s community. Nobody wants to admit they’re getting weaker or are in trouble, and I think that initially, he was afraid to categorize himself as a person with Parkinson’s. He wanted to face the future with optimism. But eventually, Dad decided to confront the reality of his diagnosis and lean into his new experiences.

Soon enough, he started taking Rock Steady Boxing classes, where he met people in the Parkinson’s community who shared his struggles. Instead of having to describe his experiences to his newfound friends, he felt understood without uttering a word. Suddenly, he started laughing more. He looked physically stronger, perhaps due to the exercises. Then he started to gain insight from other people’s experiences.

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I’ve read that friendship occurs when we look someone in the eye and find ourselves saying, “Me, too.” There’s an undeniable connection that happens when we see ourselves in others. Maybe it removes an element of loneliness or provides more clarity in our lives. But those friendships are what make life bearable in many ways.

COVID-19 shut down my dad’s Rock Steady Boxing classes. But he recently started doing Parkinson’s-specific exercises again. When I saw him, I felt a wave of relief. He looked good. He was smiling. His body wasn’t betraying him as harshly as I’d seen it do before.

And I suspect it’s not just exercise that’s changing his mindset. I think it’s the people in the Parkinson’s community, too. When he can look his friends in the eyes, knowing that they understand him on a different level, maybe it takes the edge off the pain. And maybe it’s being alone in one’s suffering that’s one of the most difficult parts of navigating a disease like Parkinson’s.

What does it feel like to see yourself losing abilities that used to be automatic? Or when you can’t speak as clearly as you once could? Or when you walk into a room and freeze to the ground while everyone watches? As the daughter of a man with Parkinson’s, I can really only guess what it’s like to navigate a disease like Parkinson’s. But those who have a Parkinson’s diagnosis often exhibit a greater level of understanding of and compassion for others who have it, too. That’s the resilience of the Parkinson’s community.


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.

Comments

Mike avatar

Mike

Mary Beth,
Parkinson’s is certainly tough but there can be other health conditions that can be difficult. Joining with other with a similar
diagnosis can provide inspiration. It is a blessing to share insights with others. So many of my ‘new’ 65 y.o. pearls’ come from this new reality of being a PwP. God has given me this problem or gift , it is how I perceive it. Your Dad can benefit
from shared experiences with others. It is how we all can benefit as we begin to start our Next Act. Blessings, Mike

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