An interview with Tony Saviano: Movin’ and Groovin’ on July 12, 2024.
Biography
I was born and raised in Chicago and was a real estate broker for 44 years in the Northwest Suburbs before retiring last year. My wife Darlene and I just celebrated our 50th wedding anniversary. We have four wonderful daughters and seven fantastic grandchildren. I was also a drummer in a rock and roll band back in the day. From drumming to Karate and Tai Chi, I have always considered myself an active person. My Parkinson’s diagnosis came in 2002 after my wife and I noticed changes in my movements and a tremor in my left thumb.
Can you tell me more about your organization? (Tony VS PD)
The Tony vs PD (@TonyvsPD) Instagram has been going for three years now. My family and I decided to start it to help motivate me to stay active and fight this disease with exercise. An added bonus that I didn’t anticipate was how much I could inspire others, which in turn, keeps me inspired and motivated. It’s been incredible seeing my content travel around the world and reach the larger Parkinson’s community.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I have been passionate about positive thinking and have admired people like Zig Ziglar for many years. This optimistic mindset has absolutely helped me with living with PD for so long.
What type of goals do you have when working with Coaches or Physical Therapists?
My main goal as a patient is truly to keep moving in both the short and long term. I notice a significant change in my balance and stiffness when I skip my training.
What type of training and how long are the programs?
I do Tai Chi every other day or so to focus on balance. I usually do a 30–45-minute session at home. I also do 15–30-minute Parkinson’s Foundation workouts from their Fitness Friday videos. Their sessions work on a variety of areas such as posture, brain and body, big movements, and strength. I cycle through these videos depending on what I feel I should focus on each time. Lastly, I train with my oldest daughter in her home gym about once a week. This is another opportunity to customize workouts to my specific needs — we focus on strength, seated cardio on a rower, and always include some balance and functional exercises like getting up from the floor.
What effect can training have on you and your Parkinson’s?
It makes all the difference in the world! It helps keep me going both physically and mentally.
What would you like to see as a future goal for your programs?
Maintaining strength and the ability to move and be independent as long as possible as I age with PD.
What events do you participate in?
My family and I are very active with PD related organizations and events. We have participated annually in the Parkinson’s Foundation’s Moving Day Chicago walk, PD Revolution cycling event, and attended their Stand Up for PD comedy show fundraisers. We also participate annually in the Michael J Fox Foundation’s Run/Walk Series.
How does your advocacy also assist the caregivers?
Advocacy as a baseline provides necessary support and recognition for caregivers. The more PD is talked about, the more resources can become available and accessible to fill gaps and meet the caregivers’ needs. It is so important that we are constantly recognizing everything they do – for me, I wouldn’t be here without my amazing wife, Darlene.
How can someone get in touch?
People can reach out via Instagram: @tonyvspd
How can others also become advocates for awareness?
Since PD is so common, many people probably know someone with it whether they realize it or not. The more it’s talked about through organizations like Together for Sharon, the more people will be inclined to participate in events, donate, and talk about it within their own communities.
What’s the secret to managing PD in the long term?
My answer is – it’s crucial to have a Movement Disorder Specialist that you feel you can be a partner with through this journey. After these 22 years, I can say that finding the right med strategy takes a lot of trial and error and is ever changing. Being able to have conversations about my experiences and have a MDS that listens to all of it has offered me a much higher quality of life than I may otherwise have.
How can we better fundraise to support a cure for Parkinson’s?
I think that PD organizations are doing a phenomenal job with fundraising so it’s great to see the government taking on some of that burden with the recent National Plan to End Parkinson’s Act.
What other activities do you undertake to help improve and support your daily living eg exercise and alternative remedies?
Other than exercise, music is still a big part of my life. I love to jam on my old drum set when I get a chance and listening to my record collection brings me a lot of joy. Organizing and cleaning old records also keeps me busy!
Why should people who don’t have Parkinson’s care?
Parkinson’s is a disease that relies on care teams and support from friends and family. So many people are touched by this disease in some way whether they have it or not. It’s everyone’s responsibility to care for and support their communities.
Have you had any other family members or relatives affected by Parkinson’s disease?
My mother was never diagnosed, but as my symptoms have advanced, my family and I see many similarities. We think it’s very likely she had PD too.
If you had one song that would tell us more about you or represent your life, which song would it be?
“Here Comes the Sun” by the Beatles
It’s an uplifting song that represents the positive thinking I have always been a proponent of…and The Beatles are my all-time favorite band.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Keep moving!