Reflections on Writing
One year ago, I posted my first blog on my website shakingupparkinsons.com. It marked a new beginning for me as a writer. I had dabbled in writing and I was looking for a way to share my voice more broadly and serve as an advocate in the Parkinson’s (PD) community. After having several pieces published online, I realized I had more to say. I made the decision to start my own blog. The goal was to share and document my experience of living with Young Onset Parkinson’s disease (YOPD) to help readers feel inspired, understood and part of a larger community.
With 18 blog posts under my belt, I have indeed developed a voice of my own. The blogs tend to be, as one friend put it, “snack-sized,” just enough to have a real message or “nugget” and an easy 5 minute read. I base each story on real-life events and “aha moments,” and the blogs typically have a universal theme. The stories are quite personal and often reveal my deep emotions and revelations. It took time to get accustomed to seeing my inner thoughts and feelings laid out as a post for anyone to see. I felt exposed and vulnerable and still do each time I write and publish. I am motivated to share my stories, because it helps to raise awareness about what it’s like to live with Parkinson’s disease. If my story has a positive impact on one person living with Parkinson’s, then it is worth a bit of vulnerability.
“Writing is my therapy. It keeps me in the moment and connecting with myself.”
It is still a very little-known fact that the number of people who get diagnosed with Parkinson’s under the age of 50 is growing. Many of those with YOPD are usually still working, raising children and are quite active. They have a need to meet other people who are in the same stage of life. Their issues are different than those who get diagnosed in the latter part of their lives. In many cases, they live active lives more than 20 years into their diagnosis. This requires an ongoing motivation, commitment and resolve to face this neuro-degenerative disease through medication, exercise and a positive mindset. One needs an ability to overcome setbacks and adapt to new challenges and side-affects. Keeping active in the community, attending conferences and building a network are all vital to fighting PD.
Attending the World Parkinson Congress (WPC) in both Portland, OR in 2016 and Kyoto, Japan in 2019 became the launching point for my role as a PD advocate. In 2020, I became an Ambassador for the 6th WPC in Barcelona, July 4-7, 2023. WPC brings together those who have Parkinson’s and their caregivers with scientists, neurologists and others who serve the Parkinson’s community, including physical therapists, social workers, nurses, fitness instructors, and more. There are opportunities to present abstracts, enter a video competition, and sign up to get matched with a buddy, as well as to meet leading researchers who are at the cutting edge of finding a cure. The WPC offers a chance to hear the latest research, medications and news in the Parkinson’s community, as well as to meet other PD Advocates.
I try not to look too far ahead because Parkinson’s is unpredictable. Writing is my therapy. It keeps me in the moment and connecting with myself. I look forward to continuing to share my insights and experiences in the coming year.
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.