CHAMPs > Parkinson's CHAMP
I was diagnosed with Parkinson's disease (PD) in 2008. Getting a diagnosis of Parkinson's is devastating. It affects every aspect of your life and is often referred to as “the shrinking disease.” It robs little bits of your life over time, leaving you no longer able to do many of the things you used to do and were very good at doing.
Then one day I decided, the heck with Parkinson's! I committed to never use the word “disease” following the word Parkinson's, to tell my story and become the best possible PD advocate I can be. I promote PD advocacy 24/7 starting with the moment I wake up every day. I share a passion for both advocacy and clinical trial research. The Unity Walk has strengthened my networking and PD advocacy mission.
For me, PD now means POSITIVE and DETERMINED!
After years of seeking an answer to what was wrong with me, I was finally diagnosed at age 54 with Parkinson’s. I had been through the usual stages of grief, I’d been angry, asked “why me?” and finally accepted my life would never be the same. Life wasn’t going to be the same, but it definitely didn’t have to be over. Instead of focusing on how Parkinson’s had stolen parts of me without my permission, I discovered I had other strengths and talents. I made new friends - friends whose paths I wouldn’t have crossed if not for Parkinson’s. It is true - whenever one door closes, a window of opportunity opens.
Facebook and social media can be useful tools used to connect people with common interests or in this case a common enemy, Parkinson’s. Enter John Humphreys. We became friends on Facebook. I had learned through other Facebook friends that John was the guy who could help me in my quest to become a Parkinson’s advocate. John is very well known in the Parkinson’s community and a well-respected Parkinson’s advocate. I reached out to him on messenger to ask him where I should start. John took me under his wing and mentored me.
John made a to-do list on getting involved in advocacy. One of the things on this long laundry list was to participate in the Parkinson’s Unity Walk. This was non-negotiable. The team had been called East Coast for A Cure. We recruited team members from all over, even internationally. We knew we needed a new name. We came up with a name that would have meaning for all of us - “Team D’ohpamine.”
We downloaded the Parkinson’s Unity Walk app from the website and used it to raise funds for our team. John persistently and doggedly encouraged, cajoled and “gently” reminded the team members to keep up with our fundraising efforts. We wrote letters, set up our personal donation pages, and we used the automatic Facebook postings through the PUW app. Our team goal was $10,000. We exceeded that goal and have collected $12,828 to date with more donations expected to come in before the 2018 Unity Walk closes.
The primary reason we chose to participate in the Unity Walk was to raise funds for Parkinson’s research. We’ve come to realize that the Walk offers so much in addition to raising funds for research. It was encouraging to see Parkinson’s cannot rob us of the simplest joys of connecting with others and making new friends; sharing the same struggles and challenges and doing so with a smile and a positive attitude. If you asked us if we would we do this again; our answer would be a unanimous and enthusiastic, YES!!
John Humphreys and Julie Fitzgerald
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