When did you first get involved with The Parkinson Alliance?
I first got involved in April 2007 through the Parkinson’s Unity Walk. I had just been diagnosed that winter. I’ve been supporting them ever since and I’ll be involved forever. Carol Walton and her team have been so wonderful—they have been directly involved in my care and have made a huge difference! And the Unity Walk community is like no other. Everyone is there! A friend, James McNasby, told me that it’s the one day a year when he likes having Parkinson’s…the feeling that you are not alone, that you are all in this together is that wonderful.
What advice do you have for someone newly diagnosed?
Try not to panic! Mike Tyson said that “everyone has a plan until they are punched in the face.” Coming to terms with Parkinson’s is an evolution. None of your grieving and fear will resolve overnight. It takes time, but that’s OK. You need to give up control. Having Parkinson’s is like walking down a long hallway. There are doors and rooms and they are not revealed all at once.
As a practical matter, find a good movement disorder specialist! It will make a huge difference over time.
What inspires you?
My family. I have a close-knit family–my sister, parents, and two nephews are all fantastic. They are always there for me, support me, and tell me never be afraid to ask for help.
What are you most proud of?
My group of friends! There are eight women—we met on the very first day of college and have been friends ever since! These are long and deep relationships and this network has sustained me more than medication!
I’ve learned over the years the importance of being a compassionate listener. I’m proud that I’m open and friendly, yes, but I listen really well. Friendships are not all one way. You need to listen, and offer and ask for help. I’ve told my friends that if you need something, you have to tell me so that I can be a friend to you. They do the same for me.
What do you dislike?
Stress! It’s my enemy! As time has gone by, I need life to be more predictable. Little things will knock me off my game. I know that to feel my best, I have to be firm with how I build my day. I work from home and when I do go to meetings, I’m clear that I cannot sit in one place for hours at a time. I cannot skip lunch or have a late lunch. I need to eat at certain times.
What should more people know about Parkinson’s?
That its not just shaking. Often people will say “you don’t look sick.” But they don’t understand what it takes to get that way. That it can be the little day-to-day things that become difficult. Its remarkable the difference it makes when the meds go off.
I also wish more people knew that if you have Parkinson’s, you don’t forget how to laugh. I don’t have time for an “organ recital—“ a litany of problems. I joke all the time.
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.
- Brian Reedy
- 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