My Parkinson Story is a weekly column featuring member of our community, sharing their stories with PD. We are interested in sharing a wide array of experiences, including yours! PD looks different in everyone, and affects everyone differently, including friends and family of those with PD. If you’d like to share your story on our blog, please email us.
Almost five years ago I retired from a 35-year career in telecommunication sales and began in earnest to design the rest of my life. I had always planned to include a component of “giving back” to the community and started a search for a not-for-profit organization that could benefit from my experience in business. I had spent years working for young, medium-sized companies that grew into tech giants. My role had usually been one of expanding into new geographies, and building a sales and service organization organically. We set market strategies, worked with media to introduce our company and its services and recruited and led new teams. I was blessed to work with talented and committed people who were very successful and I learned a lot along the way.
Since Parkinson’s disease had affected members of my family including that of my wife’s, I focused my search on the “usual suspects”: national organizations like The Parkinson’s Foundation, Michael J. Fox Foundation and others. None had a local presence and seemed a bit too large for me.
An internet search on local organizations in the Greater Cincinnati area led me to the website of Parkinson’s Support and Wellness, a local/regional non-profit that was focused on providing services locally to the Parkinson community. Across the top of their home page was a banner message: “We are seeking an Executive Director.” It seemed like it was meant to be.
During the interview process, I found the old adage of “Six Degrees from Kevin Bacon Law” applied here. My interview with the President of the Board of Directors revealed that he was the younger brother of one of my closest childhood friends. The Secretary of the Board was a neighbor when we were growing up, whose backyard and ours abutted. I already had welcoming connections to the PD community.
The mission the Board presented was to grow the organization’s reach within the Parkinson community; grow the organization’s services to better serve that community, and grow the organization’s human and financial resources to accomplish those efforts. All dovetailed nicely with my experiences in my career. So, in March of 2017, The Board of Directors gave me the opportunity to realize a major component of my life redesign. I will be eternally grateful.
PSW is a small organization and, at the time, I became the second paid staff member, each of us working part-time. Volunteers make up the greater part of the team, from the Board of Directors to the members of the committees that produce the educational events, fundraising events, and perform the outreach to our PD community. They all pitched in to help me learn about the disease, and to introduce me to the PD community in our service area, a 32-county region that covers the Tri-State area from Northern Kentucky to West Central Ohio and Southeastern Indiana.
Four years later, the PSW team has been able to grow our outreach and have a database of nearly six thousand members of the local Parkinson community. We have increased the number of educational events we call PD EDU’s, granted hundreds of thousands of dollars to providers of exercise and other physical therapies designed specifically or primarily for Parkinson patients. We expanded the number of support groups and groups that target specific subsets of the community, including recently diagnosed patients, persons with PD who are in the workforce, and caregivers/care partners. We even found a way to keep those groups thriving during the Covid-19 pandemic.
Through it all, my most rewarding experience has been meeting and working with so many people who are touched by this disease. My first organizational event was the annual The Basics of Parkinson’s PD EDU, targeting newly diagnosed patients and their care partners. The Basics of PD included a presentation by a doctor from the staff at UC Gardner Neuroscience Institute. The presentation goes into detail on how doctors think about Parkinson’s, how the disease is diagnosed and the symptoms that Parkinson’s patients present and was followed by a panel discussion by persons with Parkinson’s. The panel covered their diagnosis stories and the strategies they have employed to live well with Parkinson’s. It was the perfect introduction for me, the newly arrived team member. It was at this first event for me that I began to meet and make new friends and begin to understand how heroic so many of them are.
I am encouraged every day by these heroes and inspired to continue the mission. A mentor once told me the key to building and sustaining a great organization: “if you have good people, nothing else matters. If you don’t have good people, nothing else matters.”
Parkinson Support & Wellness has good people. Staff and volunteers who are dedicated to the mission of expanding our reach to all of the Parkinson’s community. Our goal is to arm those in our PD community with knowledge and to connect them to resources that allow them to manage their response to the disease to live well, and to build a community of support. I have found that the people who make up the Parkinson community— the care providers, therapists, sponsors and generous donors, and most importantly, those with PD and their care partners— are very good people.
In the end, as we strive to grow the reach and the scope of Parkinson Support & Wellness, as my mentor suggested, “If you’ve got good people, nothing else matters.”