A Small Town Advocate for A Big Time Issue
Opening my mail yesterday from my rural box out here in the sticks, I found quite a surprise! No, it was NOT a snake, although we have had our fair share of spiders and baby birds. Instead, all rolled up and bent inside the mailbox was a large cardboard envelope. Racing up Hott Lane to our house (for scissors), this barely five foot tall, small town advocate discovered an “official proclamation” from a very “big” time politician concerning an important national health issue! With a beautiful blue folder trimmed in gold, the fancy paper inside read:
“Now, Therefore, Be it Resolved that I, Jim Justice, Governor of the Great State of West Virginia, do hereby proclaim April 2018 as: Parkinson’s Disease Awareness Month”
No one’s voice is ever too small to be an advocate
In the midst of a week filled with terrible news, receiving recognition from the residents of the Mountain State felt pretty cool! While big-time state issues concerning a pipeline and PEIA (Public Employees Insurance Association), my Delegate Daryl Cowles found the time to support patients affected by Parkinson’s disease. With available healthcare a hardship for many in our rural state, bringing awareness will ensure hope that our legislature is working for its constituents. They really do care.
I may be tiny in stature and hail from a town of less than 800 residents, but watching an incurable, chronic illness slowly maneuver its way in our lives gave me a whole new quest. Ten years ago, my “hotthubby” was diagnosed with Parkinson’s disease. A neurological disorder that affects movement and often tremors, PD manifested itself in the form of stiffness, cramping muscles, and rigidity for Dan. Gradually, I found my own “voice”.
With my new laptop in our corner kitchen cubby, I began to share our story on a personal blog called "Excuse me, can I tell you something?" Most online articles seemed to feature elderly Parkinson’s patients suffering from symptoms similar to that of my young husband and father of four. Sharing my mom moments bridged a connection with other families, online faith communities, and even congressmen and senators.
I was a small person with one, small voice; but, in a community of many - we become part of a much larger voice.
Resources come in many forms
Discovering a cure and developing new therapies to treat Parkinson’s disease, obviously, require millions of dollars. Next to robbing a bank, I knew extra money was a resource we would never have to offer the many fundraising efforts found on awesome sites like the National Parkinson's Foundation or The Michael J. Fox Foundation for Parkinson's Research. I may not have had funds to donate, but I still had a story to share.
Soon, I discovered that by beginning to connect with others in the Parkinson’s community, my own unique Advocacy Recipe for PD was beginning to cook. Even without cold hard cash, I could still make my voice heard. With a few quick internet searches, I found resources available to assist advocates. Several sites offer help in advocacy; from providing merchandise, national events, online media kits, congressional links, to even local and state proclamations, much of the hard work was already done. I just needed to plug it all into my own email, blog, or social media post.
Before I realized it, I was begging to cook up my personal Advocacy Recipe for Parkinson’s disease. It goes something like this:
My Advocacy Recipe for Parkinson’s Disease
- Internet Access
- Resource Sites (like ParkinsonsDisease.net, National Parkinson’s and Michael J. Fox Foundations, etc.)
- Email address
- Contact Phone Numbers for Congressional Representatives
- Contact Info for Local and Regional Media Outlets
- Laptop and/or Cell Phone
- A Fearless, Bold, and Relentless Attitude
- Dash of Prayer
Begin by turning on internet access to a temperature required to connect to existing resources. Create email and phone contacts. Insert personal story. Stir with a fearless, bold attitude that is relentless for answers. Sprinkle with a heavy dash of prayer. Repeat until answers are generated, connections are created from social media, legislative representatives, and research centers.
Results...a "small town advocate for a big time issue."
Has it been difficult for you or a loved one to maintain hobbies?