This week, we’ve invited our YOPD Council leaders (Amy, Steve, Gaynor, Kat, Tom, Erin, Heather, and Kevin) to take over the blog and share their stories. We hope you’re as inspired by them as we are.
Interview with Gaynor Edwards, Davis Phinney Foundation YOPD Council Leader
After a few years experiencing symptoms she attributed to stress, Gaynor Edwards visited her general practitioner and learned that the symptoms instead were caused by something neurological. Nine months of various scans later, she received a diagnosis of Young Onset Parkinson’s at the age of 42. “‘You have Parkinson’s.’ Those are three words no one wants to hear,” she says.
Gaynor found support and resources in the UK’s major Parkinson’s charity, but she quickly discovered that YOPD wasn’t a focus there. “I thought, ‘Well, it’s needed. We need to start a charity dedicated to Young Onset. I guess I’ll have to do it.’ So, I did.”
Learn more about how Gaynor founded and continues to lead Spotlight YOPD (a registered charity in the UK), how she got involved with the Davis Phinney Foundation, how she responds to challenges, and how she seeks humor in everything.
- Gaynor founded Spotlight YOPD in January 2016 and says the community tries “to groovy-up Young Onset a little bit. We have different stuff going on in our lives than someone who is older. It’s different for us. We want to identify and share information with people our own age going through what we’re going through.”
- When she discovered the Davis Phinney Foundation, she thought it had much in common with Spotlight. “You seemed young, groovy, interested, and that was it for me.”
- When faced with obstacles, be it money concerns or other people’s lack of knowledge about Parkinson’s, Gaynor looks on the bright side. “You’ve got to have a little bit of fun,” she says, “a little bit of a giggle.”
- To someone newly diagnosed with Young Onset Parkinson’s, she would say, “Don’t panic. It’s not as bleak as it first feels. Your perspective changes. It’s not a joy, but the perspective you get with any chronic illness helps you live life fully. You don’t just exist. You seize opportunities.”
Learn more about Gaynor and Spotlight YOPD at spotlightyopd.org.
WANT TO learn more about the yopd Council?
You can register for the entire YOPD Council series here. We meet on the third Thursday of every month to discuss the unique challenges of living with YOPD.