My shaky voice and uncomfortable glance were met with kind, compassionate eyes. “Oh my, you have Parkinson’s too? Well, welcome to the club. You know, it’s a rather exclusive club, we don’t just let anyone in.” That exchange marked the first time I met Bill Wilkins, an older successful media executive and entrepreneur from Atlanta, Georgia. We were at the annual Michael J. Fox Foundation fundraiser and that is when my work in advocacy began, almost 10 years following my diagnosis.
Before I met Bill, I spent years burdened by my fear of a future of disability, unable to proactively live my life, incapable of emotionally accepting the challenges that I now faced.
It was through Bill that I was introduced to the Michael J. Fox Foundation, an organization that he was extremely passionate about and was committed to supporting. He felt that they were on the path to curing this disease which serves as a disabling force in the lives of millions, a belief that I now share. Being the connector that he is, he believed that I could provide a perspective that may be helpful as a patient and physician. And through his connection, I joined him on what was at that time, the newly founded Patient Council. From that day forward, he took me under his wing and our friendship grew.
Bill became my mentor, someone whose selfless efforts I looked up to, whose optimism and hope for the future inspired me, whose acceptance helped me overcome my own fear of the stigma that comes with this diagnosis. He looked out for me and was always openly supportive of the work he heard I was involved with, which often paled in comparison to his own achievements. He was smart and insightful, a force to be reckoned with, although his influence was always delivered with his characteristic kindness and humor. He was always connecting people, creating collaborations that he felt were necessary and beneficial, his focus always on what he could do, how he could contribute to ending this disease not only for himself but for all of us, once and for all.
I heard of Bill’s passing while attending the World Parkinson’s Congress in Barcelona, an international conference for stakeholders, patients, clinicians, care partners and researchers. Many of us in attendance quietly shared our grief about losing another in our community and told stories of a man that will be deeply missed. I was moved to change part of my plenary session presentation to share Bill’s story with those in attendance, to share that I no longer want to witness friends, the pillars of our community, lose their lives ravaged by this disease. I was tired of witnessing them slowly and unwillingly succumb to the relentless war that this disease wages. I also challenged those in the research and clinical communities to learn from the perseverance of those like Bill, to be inspired by their strength and to use that inspiration to guide their research efforts, to add urgency to their work.
There are very few things that I truly count as blessings that I can directly attribute to my Parkinson’s diagnosis.
One of those blessings is the people I have met since those words “I think you have PD” were uttered. The one that started it all was Bill. When else would our paths have crossed? How else would a friendship between two very different people in many ways, except for a shared diagnosis, have thrived? And it did.
There were challenges. I could see how much he missed his life partner, Sara after he lost her a few years ago. I saw the effect that the pandemic had on him, isolating him literally at times from those he loved the most, how he felt his wings had been clipped through all the restrictions that were in place. But through it all, even as his own health became challenging, I marveled at his resilience. I take comfort in his hope for the future despite it all and I learned from him, the power of optimism. I take solace in the knowledge that he was loved by so many. And I feel a sense of peace knowing that he was surrounded by those that meant the most to him, his family, as he took his last breaths.
I will miss you my friend and know that we will take your torch and try to move it forward in your name.
Our club, that exclusive club, has lost one of its best...