My dad was diagnosed with Parkinson’s disease in 1991. He was, and will always be, my brightly shining star, and his diagnosis was shocking and scary news.
I knew nothing about the disease back then. Having no access to the Internet, I raced to the library to learn everything I could about Parkinson’s. It was the first time I experienced an understanding of the statement “knowledge is power.” I found that gaining knowledge and taking action helped lessen my fears about his future while providing guidance on helping him live his best life. Little did I know then that this form of empowerment would direct many of my life’s choices.
As the Executive Director for the Parkinson Association of the Rockies from 2003 through 2007, I was often asked to share information about research opportunities in our regional newsletter. I felt a strong passion for sharing study information and results to provide hope for myself and others, but I also felt that it would be disingenuous of me to ask others to participate in something I did not embrace personally. As the child of a Parkinson’s patient, I wanted so desperately to help my dad! I started participating whenever and however I could. I quickly found that being part of the solution to finding the cure helped me gain a strong sense of pride.
I completed my 11th Fox Insight study visit earlier this month and have completed multiple research studies through Fox Trial Finder over the years. Both platforms make it simple to get involved and stay involved.
Most studies I have participated in focused on the impact of Parkinson’s disease on the family. Technology has made it easier and more convenient than ever to help. While being adopted excluded me from some genetic studies, I have had many opportunities to help and make a difference in the fight for a cure. It is possible to make as much of an impact as a non-patient as it is for a patient — researchers need both types of participants.
After living with Parkinson’s for over 27 years, my dad passed away in late 2018. He stayed positive throughout his journey and reminded me that Parkinson’s was only a small part of him — it never defined him. He lived his life with integrity and dignity and was the best role model I could have ever asked for. I stay motivated to participate in research because: 1.) it serves as a way to honor his memory, 2.) it helps others affected by Parkinson’s that I’ve met and haven’t met along my journey, 3.) it allows me to pay it forward by being a role model for my own children and 4.) it increases the chances of seeing this disease cured in my lifetime.
My work with Parkinson’s is the work I am most proud of, and I am grateful that it has given me a way to help others while also honoring and supporting my dad. Taking action through research hasn’t been solely about others, though. It helps me, too. When the problem — the cure — feels bigger than myself in so many ways, having tools at my disposal to chip away at it makes me feel that I am truly making a difference.
If you know someone with Parkinson’s, you can help advance Parkinson’s research by joining Fox Insight, MJFF’s online clinical study. Your unique experiences are valuable for researchers in their pursuit of capturing the overall voice of the Parkinson’s community. Learn more and register at foxinsight.org.