Each month, we spotlight Moments of Victory® from people in our community. Today, we are happy to feature Davis Phinney Foundation Ambassador Joe Narciso from New Providence, New Jersey.
Briefly describe your journey since diagnosis
I was diagnosed in 2003 at the age of 34. At the time, I was an actor living with my wife and two daughters. My progress was initially slow, but in 2010, I had to go on disability. In 2011 I had deep brain stimulation (DBS). It worked brilliantly for a few years, but beginning in 2014, I could tell it wasn’t managing my symptoms. By 2017 I was in a wheelchair, and my voice was severely affected. I thought it was just the progression of Parkinson’s, but I started seeing a new doctor. Dr. Arash Fazl, who now practices in Seattle, got me out of the wheelchair and helped me regain my voice. I’m doing well today, saving up to travel to Seattle for a checkup with Dr. Fazl, and taking daily walks with my granddaughter, Aria.
How do you live well each day?
I write, take long walks, and help at my church with the Men’s ministry. I also help make videos for the church. Additionally, I volunteer at a few high schools in my area by helping with the Every 15 Minutes Anti Drunk Driving program. I’m an Ambassador for the Davis Phinney Foundation, a top yearly fundraiser for the Parkinson’s Unity Walk, and a lobbyist with the Parkinson’s Action Network, now the Michael J. Fox Foundation. I try to take the things that I didn’t know back when I was first diagnosed and share them with others so they don’t have to experience the same struggles I did.
What do you wish you would have known when you were diagnosed with Parkinson’s?
I wish I had been better with my money. I was primarily a voice actor and assumed that as long as I could speak, I could make a living. Unfortunately, I was wrong, though I’m very blessed to have the resources I do. I also wish I’d known how DBS is supposed to work. I could have saved myself a lot of pain if I’d known what I know now.
What do you wish everyone living with Parkinson’s knew about living well?
There are many different ways to live well, and it’s important to keep doing things you love.
SHARE YOUR VICTORY
Each month, we spotlight people from our Parkinson’s community who embody living well today – what we call Moments of Victory®. Your story, like Joe’s, could be featured on our blog and Facebook page so others can learn from your experiences and victories.