An interview with Margie Alley from PingPongParkinson– Gotta Keep Moving on October 23, 2023 by George Ackerman, Ph.D, J.D.
Biography
I am a 60-year-old woman with 2 adult children who was diagnosed with PD at age 48. currently work p/t as a social worker in a school for children with learning disabilities where I have been employed for 24 years. I have enjoyed playing many sports throughout my life, especially tennis which I played on a competitive level in high school/ college and up until age 55 when my PD diagnosis led me to change playing table tennis.
Can you tell me more about your organization?
I am quite involved with PingPongParkinson, (3P) which is an international organization/program started by a man named Nenad Bach which focuses on playing ping pong to help people with PD.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is playing ping pong and I have found that exercising and being a part of a community is vital to slowing down the progression of my PD. I became involved in Parkinson’s awareness after creating a 15-minute film called “Gotta Keep Moving” with the help of my childhood friends and their colleagues who are documentary filmmakers. The goal was to tell my story to inspire newly diagnosed people with Parkinson’s to exercise and to be part of a supportive community.
What type of training and how long are the programs?
I participate in the weekly PingPongParkinson program which meets twice a week for approximately 1.5-2 hours each session. I train with an instructor for an hour each week and play almost every day with neurotypical (people who do not have PD). I also train with a Rock Steady Boxing instructor 1x weekly for strength, agility, and balance.
What effect can it have on an individual with Parkinson’s?
The short- term effect is that my symptoms subside when I play and for many hours after my matches/practice. It positively affects my mood since I enjoy playing and it helps me to continue to feel like a competent agile athlete. I also enjoy the social interaction it provides for me, having made new a whole new circle of friends. I even met my life partner through 3P; he was volunteering in the program (he does not have PD) and it was a bonus at a difficult time in my life when I was going through a divorce. I have made many connections with PwP internationally after competing in the PingPongParkinson World Championships where I have earned gold, silver, and bronze medals.
The long-term effect is that playing ping pong and being physically active has helped me to slow the progression of the course of my PD.
What would you like to see as a future goal for your programs?
I am hoping that my film can reach and help inspire as many people as possible. Social Media has helped to share it worldwide. I would like to make a sequel to the movie – 5 years later and still moving to show the changes in my progression yet highlight what I am still able to do, physically and how it has helped me, emotionally. I am hoping that I can get some financial backing and support to be able to make this happen.
What events do you participate in?
The 3P World Championship
The Parkinson’s Unity Walk – I have participated for the 11 years with a team that has been recognized for being one of the highest earners.
The World Parkinson’s Congress in Barcelona where a 3-minute version of my film made it to the top 10 of the video contest. I also participated in the opening ceremonies as part of the Dance for PD Organization.
How does this also assist the caregivers?
Many of the caregivers accompany their partners and work as volunteers at 3P. They hit balls to their partner with PD and other participants.
How can someone get in touch?
PingPongParkinson.org
Facebook: Gotta Keep Moving: The Movie
What is your website?
I don’t have one but here is the link to my film: Gotta Keep Moving
In your opinion what is the key to effective advocacy?
It takes a village, so we all need to work together on every level to advocate for Persons with Parkinson’s.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I eat a mostly plant based diet. I augment my ping pong and boxing training with bike riding, elliptical and swimming in the warm weather. I also do a lot of cross -country skiing in the cold weather.
Why should people who don’t have Parkinson’s care about this?
More and more people are being dx with PD and the age of dx is getting younger.
Have you had any family members or relatives affected by Parkinson’s disease?
My mother may have had PD and her father, my maternal grandfather had Parkinson’s.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Every day is a new day… you gotta keep moving and you’ll feel better.