In addition to The Parkinson Alliance, Brian is deeply involved as an ambassador for the Davis Phinney Foundation, with the Michael J Fox Foundation Policy Forum, as well as the World Parkinson Congress. Spend a few minutes with him and you’ll come away with renewed energy and optimism.
When did you first get involved with The Parkinson Alliance?
Shortly after I was diagnosed in 2011, I attended a Young Onset Conference and met John and Edna Ball. I became involved with the San Francisco Marathon put on by Team Parkinson and fortuitously met Carol Walton. I have a great kinship with them all, and am so impressed with Carol’s wit, caring and compassion. She really invests herself in people.
What advice do you have for someone newly diagnosed?
It’s not as scary as it seems. Learn as much as you can about the motor and non-motor aspects, and do this from reputable sources. Educate yourself; attend conferences. But above all, get yourself a good movement disorder specialist, even if you have to drive five hours like I do. And look into the non-medication ways to improve your life, like forced intensive exercise, music or speech therapy. I especially love Rock Steady Boxing. You get a better chance of managing your disease by pushing yourself. I just bought a recumbent trike and plan on riding it from Los Gatos to Carson City, through the High Sierras. Challenging myself and having goals keeps me moving forward with optimism.
What inspires you?
My faith is my guide. If I focus on that, it leads me to positive people. My parents were my inspiration in so many ways. I’ve learned that they are the source for whatever good is in my life, though I rebelled a lot when I was younger. I’m friends with Lucy Wedemeyer. Her husband Charlie had ALS, and was given 1-3 years. He lived 30 and continued to coach football even though he couldn’t speak and Lucy had to read his lips. John Ball, who continues to find ways to keep running, has learned the science of Parkinson’s and teaches it to others. People like this ignite me. I’m not some pie in the sky guy. All my learning is a result of persevering through tough times and embracing change. They make me appreciate the genuine value of things and what’s important. My Mom, who was in a lot of pain with arthritis, heart and back issues, always said, when I’d call and ask how she was, “I am better today than yesterday.” That’s how I try to think of life.
What are you most proud of?
It may sound cheesy, but honestly my greatest gift is my wife Lily—I am so proud of who she is. She is one of the most genuine, honest, empathetic and genuinely loving people I know. The more we do things together, the more I learn from her and the better we become. Parkinson’s makes communication difficult and can strain a relationship. We work at it. It is not always easy. She helps me be a better person and I am so proud to be partners together in everything.
What do you dislike?
Negativity, and pity and divisiveness. These are things we deal with in reality. When they are my behaviors I try to pull out of it and then use them to help me improve and learn. As people with Parkinson’s, we are prone to depression. I don’t like it. But my choice as to how I deal with it defines me. I try not to fall into those deep holes. —I don’t like them. But sometimes I do and I need to learn from it. Divisiveness is a sad reality in politics. I like to see it set aside and everyone honestly work to accomplish real goals.
What’s your favorite word?
Hope, always hope. With hope there is forward momentum. That’s what life is, moving forward. Learning, growing. Giving, being positive. Being with others. For me, it’s hard fought. I made a lot of bad decisions early on. I was homeless, in trouble, lost. I had to find my path. Luckily I did and became a high school teacher for 20 years.
What should more people know about Parkinson’s?
That movement is our best friend. We might be slower, or stumble or be awkward. People may feel sorry for us and want to help. But they need to give us the opportunity to assert our own power. Don’t shut us down; don’t assume we cannot do it. Afford us the opportunity to exert our own strength whenever possible.
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.
- Linda “LuLu” Woodruff
- Claude Pepin
- 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