Playing the Parkinson’s Wild Card

Playing the Parkinson’s Wild Card
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“Parkinson’s will not define me.”

That was my mantra when I received my diagnosis five years ago. Today, I write about Parkinson’s, participate in Parkinson’s research studies, and teach classes to help others fight Parkinson’s. So, maybe it does define me.

I began to ponder the idea after a recent conversation with my 20-year-old son, Zachary. For the last two months, he has been my virtual boxing class assistant every Monday, Wednesday, and Friday. He punches beside me as we Zoom and stream our way through the world of fitness. 

Recently, we resumed in-person classes and implemented the protocols established by our facility. He was on disinfectant duty both before and after class to keep everyone safe. The first class went better than I expected, as we had not had a class in months. The class went smoothly. At least I thought it did.

Parkinson’s: The wild card or the joker?

Later that evening, I asked my son what he thought about the class.

“I don’t know how you do it, Mom,” he responded. “Aren’t you scared?” he asked, referring to the effects of Parkinson’s on me.

Bam! Parkinson’s landed another punch. At that moment, I did not have an answer for him. I was completely unprepared. I have educated others about Parkinson’s, including how it is different for everyone. It comes in all shapes and sizes. It was interesting to see that my son’s perception of a person with Parkinson’s was just me. 

I thought about the question, “Am I scared?” Five years ago, the answer would have been a resounding yes. Working with people with Parkinson’s and writing about it would have absolutely terrified me.

However, it’s different now. Parkinson’s is part of my daily life, but on my terms. I cannot control the disease, but I can control how I respond to it. 

Parkinson’s is a wild card, or maybe a joker. It’s unpredictable. It’s the invisible enemy. However, I do have a plan. I know that exercise and my attitude are two lines of defense. I’ll continue to use both to manage my symptoms, fight progression, and help others do the same.

Does that mean Parkinson’s defines me? Or that I define Parkinson’s? It’s both, and I am playing the hand I have been dealt.  

So, going back to my son’s question: “Am I scared?” Yes, I am scared, but not as much as I used to be. There are good things happening in research. I am hopeful.

Is that the answer I want to give him? No. But it’s the best one I have right now. However, I hope I am an example of how to put your faith over your fear and face life one day and one challenge at a time. They say that faith can move mountains, but sometimes it just needs to get you through the day.

***

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.

When Lori discovered at 45 that she had young-onset Parkinson’s, she struggled with her diagnosis but decided to attack it with the same tenacity, passion, and care she brought to her career as an engineer, marriage, and motherhood (of 3 boys). Now, at 52, Lori is also a writer, a Rock Steady Boxing Coach, and a personal trainer pursuing her passion of empowering others with Parkinson’s. She hopes her column, “Life, Lemons & Lemonade,” exemplifies something she learned from dancing with her husband, Mike: ”It’s not important HOW you dance. It’s THAT you dance.”
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When Lori discovered at 45 that she had young-onset Parkinson’s, she struggled with her diagnosis but decided to attack it with the same tenacity, passion, and care she brought to her career as an engineer, marriage, and motherhood (of 3 boys). Now, at 52, Lori is also a writer, a Rock Steady Boxing Coach, and a personal trainer pursuing her passion of empowering others with Parkinson’s. She hopes her column, “Life, Lemons & Lemonade,” exemplifies something she learned from dancing with her husband, Mike: ”It’s not important HOW you dance. It’s THAT you dance.”
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