An interview with Addie Cunningham from Indiana Parkinson Foundation on February 5, 2024 by George Ackerman, Ph.D, J.D.
I’m Addie Cunningham, and over the last 15 years, I’ve been fortunate to witness the growth and progress of the Indiana Parkinson Foundation. I’m deeply passionate about assisting individuals with Parkinson’s disease and their families. Additionally, I am a proud mother of five wonderful daughters and the wife of Eric. I was raised in Central Indiana and currently live in Noblesville, IN. My interests include spending quality time with my family, volunteering at church, camping, staying active, and enjoying the outdoors. Above all, I am a child of God, redeemed and forgiven through the blood of Christ. My hope and strength come from my faith in God.
Can you tell me more about your organization?
Since 2009, the Indiana Parkinson Foundation (IPF) has been a pivotal force in the Parkinson’s community, currently reaching more individuals with Parkinson’s than ever before. Emerging in response to my father’s Parkinson’s diagnosis, IPF started as a small initiative born from questions, confusion, fear and denial. Evolving over time with a desire to make a difference, it has grown into a community resource, guided by the grace of the Lord, providing strength and hope for many.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Having dedicated 15 years to serving the Parkinson’s community, I’ve had the privilege of forming meaningful connections with countless remarkable individuals. It all began with my deep love for my father, and now the Indiana Parkinson Foundation (IPF) is making a positive impact on the lives of hundreds of people with PD. My passion lies in fostering connections, helping individuals discover a community of hope, and providing valuable resources, support, and prayers.
What type of goals do individuals with Parkinson’s have when working with you?
Addressing diverse abilities and stages of Parkinson’s, our goal is to enhance the overall quality of life for everyone. We strive to meet individuals where they are while encouraging them to reach their goals. Our focus is on keeping them mobile, functional, connected, and surrounded by love as we guide our members through our exercise program known as The CLIMB.
What type of training and how long are the programs?
The CLIMB is the Indiana Parkinson Foundation’s comprehensive exercise program developed specifically for those with Parkinson’s Disease. The CLIMB helps to reduce rigidity, increase range of motion, and improve functional movement patterns. This program aims to address both motor and non-motor symptoms of the disease through research-based exercises. Clinical Education Supervisor, Deb Knapp, along with IPF staff conduct a 2-day hands-on learning experience to grow your knowledge of Parkinson’s Disease, the importance of neuromuscular re-education, how to apply the CLIMB exercises, and a discussion with a Parkinson’s panel.
What effect can it have on an individual with Parkinson’s?
Every 6 minutes someone is diagnosed with Parkinson’s disease. A neurodegenerative disease that is chronic and progressive. Although there is no cure, there is HOPE. The Indiana Parkinson Foundation exists to come alongside those with Parkinsons through valuable programs and services to improve their lives physically, mentally and spiritually.
We accomplish this through our pillars of exercise, encouragement and education. These elements unite individuals with Parkinson’s, alleviating the isolation often associated with the disease. Connecting people with one another through our programs allows us to help them on their journey with Parkinson’s, while giving them a support system, resources and a comprehensive exercise program for a better quality of life.
What would you like to see as a future goal for your programs?
By expanding our programs and services, my aim is to extend our outreach and further our mission. We have a long-term objective of establishing a dedicated facility that would serve as a hub for resources, classes, support groups, and more, catering specifically to those with Parkinson’s disease.
What events do you participate in?
We ended the 2023 year with 8 Educational opportunities and we are thrilled that over 230 people attended our educational events last year. These events offer insight into Parkinson’s disease, therapies for Parkinson’s disease, and important resources needed to make the journey with Parkinson’s an easier one.
Our special events help us to fund our programs, services and outreach throughout the year. In 2023 our 11th Annual Choose to Move Race had over 1000 participants! What an amazing day of awareness for the Parkinson’s Community. Our annual Purse Bingo Event had over 157 attendees and doubled in size from its inaugural event. If you have not joined us in the past, you have to check it out in 2024. It is a hoot! Finally, we added some pickleball to our events this year with our inaugural Pickleball 4 Parkinson’s. We were a part of the Holiday Pickleball Tournament at Grand Park in Westfield, where we enjoyed playing Pickleball, meeting new friends and raising funds and awareness for the Indiana Parkinson Foundation. We look forward to another pickleball event in 2024, so be on the lookout for details on this year’s event!
How does this also assist the caregivers?
IPF is now offering multiple support groups for those with Parkinson’s as well as their caregivers. Our Caregiver groups serve over 35 people, while our groups for those with Parkinson’s are serving over 60 people on a monthly basis. For those who prefer the virtual option, we also offer our Facebook support group, which now has over 260 members.
One caregiver shared, “I have been involved with IPF’s virtual support group since the fall of 2022, I have truly benefited from this group and look forward to each month’s meeting. A few of us who attend have become friends and often text each other for support. The resources available and speaker opportunities are invaluable as we all navigate this challenging time in our lives.” – Judy C.
How can someone get in touch? What is your website?
How can others also become advocates for awareness?
Engaging in our services, participating in our programs, and attending our events allows us to actively bridge the gap for individuals affected by Parkinson’s. By becoming involved, we have the opportunity to provide crucial support, understanding, and assistance to those navigating the challenges of Parkinson’s disease. Joining our community enables us to collectively stand in the gap, offering a helping hand and fostering a sense of connection and solidarity for those affected by this condition.
In your opinion what is the key to effective advocacy?
In my perspective, effective advocacy begins with prayer. I firmly believe that prayer has the power to bring about meaningful change, allowing us to find solace in the source of complete peace, hope, and strength. Additionally, I advocate for supporting and actively engaging with organizations that align with our values and goals. By identifying and getting involved with such organizations, we can collectively contribute to positive impact and work towards the betterment of our communities.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Our comprehensive CLIMB exercise program serves over 130 people throughout the state. This is a research based exercise program developed specifically for those with Parkinson’s. It helps to reduce rigidity, increase range of motion and improve functional movement patterns. Our classes are led by CLIMB certified trainers that have been through our CLIMB training program.
“The CLIMB gives my wife and me the opportunity to exercise together and with friends, but it is more than that! It is the opportunity to help others and a venue to learn more of how to deal with Parkinson’s diseases. We’ve learned so much while making lifetime friendships. The CLIMB has given us so much more than we have given. “ – Dick S.
“It is energetic, fun and offers a variety of exercises to all kinds of music for movement, balance and strength.” -Sue
“Joy.” – Diane
“As a relatively new participant, I immediately felt this was the program I needed. The CLIMB program targets the specific mobility issues I have with PD. This program is fun, encouraging and offers knowledgeable leadership and a friendly supportive community.” – Michael
“I’m the luckiest girl in the world, I get to do what I love with amazing people. The CLIMB has given me such purpose.” Lindsay – CLIMB Instructor
Our virtual CLIMB program, iCLIMB, is now in 42 homes where those with Parkinson’s need exercise, but otherwise would go without due to issues with transportation, proximity or assistance.
Why should people who don’t have Parkinson’s care about this?
While they may not currently have a connection to someone with Parkinson’s, it’s probable that they will in the future. Familiarizing themselves with the Indiana Parkinson Foundation equips them to offer hope to individuals facing Parkinson’s by connecting them with our resources and support network when the need arises.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes, my dad has lived with Parkinson’s Disease since 2008.
If you had one song that would tell us more about you or represent your life, which song would it be?
A song by John Waller titled “Something Big” was the inspiration behind the grassroots of the Indiana Parkinson Foundation.