Parkinson’s Unity Walk ‘22
On April 23, I attended the Parkinson’s Unity Walk. It was the first time in 3 years since the last Unity Walk was held due to the pandemic. The Walk was well-attended and many organizations exhibited along “Partner Alley.” I worked at the PD Avengers and World Parkinson Coalition (WPC) booths. There was so much enthusiasm from the attendees and nice to finally meet two of my fellow WPC ambassadors Larry Gifford and Jon Pawelkop, as well as WPC Executive Director Eli Pollard.
That morning, I had allowed myself 45 minutes to get dressed, eat breakfast and fill my backpack with lunch and snacks to get through the 5 hours ahead of me. In reality, it took 1 ½ hours (double) to get out the door. Thank you, Parkinson’s. I was happy to be able to walk into Central Park where the event was located without a problem. But there was something different. I noticed my tremors were present. I usually can rely on the tremors to disappear shortly after taking my morning dosage. Instead, strangely, they lasted through the event until after lunch around 1:30pm. Envious of my comrades who were still and coordinated, I willed my tremors to stop until I finally accepted that this was not in my control. It’s not easy to be shaking in my body for hours and hours, while on my feet holding conversations. Inside my head was a loop of worry that this is the new normal.
It gets to be trying to stay focused on the present and not let myself get dragged into the worries of what the future might bring. But staying present is the best coping mechanism I have against Parkinson’s disease. At events like the Unity Walk, you see many different people of all ages and as many varied symptoms. Some people have very minor symptoms like stiffness or a slight tremor, while others have more pronounced symptoms of more advanced stages of the disease. It can sometimes be difficult to see those with more disability, but they also show such bravery and courage by showing up at this event. The support of community is vital to those of us with Parkinson’s. Among the most devastating side effects people with Parkinson’s can experience are apathy and isolation, which can be debilitating and cause disease progression. Looking around at the event as I walked the 1.4 miles with my husband and daughter, I took it all in: people living with Parkinson’s, caregivers, neurologists, fitness instructors and the many organizations that serve the community from advocacy to research to technology. A very inspiring way to close out Parkinson’s Awareness Month.
About Miriam
I share my personal stories to offer a glimpse into what it is like to live with Young Onset Parkinson’s, revealing honest and intimate reflections. Hearing other people’s stories can be a lifeline for many of us living with this neurodegenerative disease. I hope to inspire and educate people living with Parkinson’s and to create community through shared experiences.