It was about this time two years ago that I first began to learn about the world of blogging. After years of living silently with Young Onset Parkinson’s Disease, my wife, Tonya, decided she was ready to join the front line in the fight for a cure. With no experience (and no idea what we were getting into), we decided that creating a blog would be a great way for her to share her story, increase awareness of early onset Parkinson’s and spread the word about her fundraising efforts.
Over the past two years, Tonya’s blog, fundraising events and awareness advocacy have largely been a family effort. Most of the time I operated quietly (and sometimes not so quietly) in the background. I learned just enough about WordPress to be dangerous. I overcame my aversion to social media, and assisted her through the trial and error of growing a social media following. I discovered that I enjoy photography, even though I still have no idea what most of the buttons do. After working through some initial concepts, Tonya settled on a fashion-themed approach to both blogging and fundraising, and the idea for the “The Shoe Maven” was born.
As my wife’s role in the local, blogging and Parkinson’s communities grew, so too did mine. I found myself wearing many hats – business manager, event coordinator, outfit consultant (don’t ask). When people asked about my involvement, I joked – “I do whatever The Maven needs.” Friends and supporters started to come up with funny nicknames to recognize my support – like “Husbanger” (pronounced like “manager”) and “Man Behind the Maven.” That last one sort of stuck and would eventually lead to this blog.
At some point during the past year, the pursuit for increased awareness, funding for research and the overall quest for a cure began to take on an even greater meaning for me. In my own family, I watched my wife undergo the second of two brain surgeries to mitigate the symptoms of Parkinson’s, yet continue to face every day with unfailing faith and grace. In the Parkinson’s community, I discovered the inspiring stories of people courageously battling this insidious disease and supporters who relentlessly dedicate themselves to the race for a cure. With each step along the way, I was drawn more and more to the cause until it eventually grabbed ahold of me in a way that is truly indescribable. In many ways, I’m now defined by the increased role that I want to play in the fight for my wife and everyone else living with this disease – and I’m good with that.
A number of people have encouraged me to share my perspective on our family’s journey with Parkinson’s – from the viewpoint of a spouse, supporter and awareness advocate. With great appreciation for their encouragement, I am launching this blog to offer that perspective. My posts will likely focus, in part, on supporting a spouse or partner with Parkinson’s or a similar chronic disease – both directly in daily life and indirectly through fundraising and awareness efforts. I also hope to offer useful information about resources and networks that I continue to discover in the Parkinson’s community.
This blog will also be my platform for sharing my more recent dedication to participate in Team Fox athletic events, beginning with the Disney 10K run, and my commitment to a personal 365 Challenge for Parkinson’s Awareness in 2016. I have never been a runner (in fact, I avoided running like the plague), so I will be sharing what I learn about running, fitness and diet in general as I go. Studies have shown that diet and exercise play a critical role in managing Parkinson’s disease, so those topics will be a focus in our household as a whole over the next year, and I will share the diet and exercise knowledge we gain.
Like most things, I expect this blog will evolve over time, and I am anxious to see where it leads. I look forward to sharing this journey with you, wherever it may take us.
Chad a/k/a “The Man Behind the Maven”