Claude Pepin first got involved with The Parkinson Alliance in the early 2000s. He met Carol Walton, CEO of The Parkinson Alliance, at an advocacy forum in Washington, DC and quickly found that they shared a common interest in lessening the fear about DBS and promoting more patient-friendly approaches. At the time, The Alliance was an early leader in providing comprehensive and personal information about DBS through its DBS4PD.org site. You can read about Claude’s DBS experiences here, but in the meantime, he has this to say:
What advice would you give to someone newly diagnosed with Parkinson’s disease?
Well, every person is different, so it’s difficult to compare your experience. I’m hesitant to give advice because of that. However I can say I’m more convinced now than ever that you need to get into an exercise program immediately, if you’re not already. I consider exercise part of my work. I bike year round outdoors in Vermont. I am convinced after 16 years of 2,000 miles per year that it does slow progression and make a big difference. Second, you need to self-advocate for your own well-being, your own health. Only you know what you need. And try to minimize time being frustrated, saying “why me?”
What inspires you?
People who follow their passion with humility. Humility is important to me. There is a spiritual dimension to life that humbles me daily. I do a healing meditation every day—not for myself, but for others. There is always someone worse off than you.
What are you most proud of?
Well, its hard for me to think that way—I like to stay under the radar! But you could say I’m proud of my work with people less fortunate – from my early days in the Peace Corps teaching math in The Gambia, to my decades of work helping resettle refugees, from Southeast Asia in particular, preparing them with skills and training. It was not always easy work. I’m also really proud of my four kids—the last one was born just as I was diagnosed in my early 40’s. I try to be a role model for them.
What’s your favorite word?
Intuition. I believe in being true to what I need to do. I don’t mean hunches. I mean the absolute clarity that comes to you when you know what path you must take. That deep knowledge carries you through a lot.
What do you wish every person knew about Parkinson’s disease?
That its not just a physical journey. It’s a mental, emotional, psychological and spiritual journey. You need hope, the will to keep going, and the ability to surrender to the present.
What began as a forum to tell the story of DBS therapy now extends to the community at large. People with Parkinson’s generously share their own stories — of challenges and victories — to help others realize they are not alone. You too can connect with others by sharing your own story. Contact us.
- John Ball
- Ten Years After, by Dan Stark
- Living with Parkinson’s Disease, by Susan Mollohan
- My DBS, by Alex Abrahams
- Marlene’s Story, by Marlene Kahan
- Kip’s Story, by Kip Smith
- DBS – 9 YEARS LATER, by Claude Pepin
- David’s not waiting for the storm to pass, he’s learned to dance in the rain, by David Dorsey
- J. Gregg Riehl runs Marathon after DBS, by J. Gregg Riehl