Tony Saviano, who’s been living with Parkinson’s for 22 years and recently celebrated his 50th wedding anniversary with his wife Darlene, is an official “badass.” At least according to his four adult daughters. Three years ago, he and his daughters had an idea: They wanted to help their dad join the Instagram revolution and bring his inspiring, fighting spirit to the masses. “He has been such a rockstar,” his daughters said, “and has not stopped fighting in the 22 years since he was diagnosed.” He’s committed to living with a positive spirit and fighting back with exercise—and it shows.
Tony’s Instagram page, which is managed by his daughters, is a catalog of his loving bond with his family and his strength. There are photos of Tony stretching on his yoga mat, pedaling on his spin bike, doing push-ups against a kitchen table, crushing his workout on the rowing machine, boxing, doing squats over a park bench, planking (with the caption, “What a beast!”), and drumming.
Tony, quite literally, is not taking Parkinson’s sitting down.
When I asked Tony’s four daughters to describe their dad, they all described a man who is clearly adored and admired—a man who is positive, hardworking, and kind. Last year, Tony retired after 44 years as a real estate broker in the Northwest suburbs of Chicago, and his daughters agreed that he was “always well-respected by peers” and a man who lived and worked with integrity. Sharon, his oldest, says that they grew up with their dad instilling in them the belief that “what goes around comes around”—so be kind, treat the world well.
Tony also knows the value of joy and of play. His second youngest, Tricia, says he’s “funny,” and Sharon added that he loves telling “Dad jokes.” Christina shared that he “cherishes family” and “likes to keep some of his Italian traditions alive,” like Sunday macaroni and meatballs. And Brianna, his youngest, summed it up best when she simply called him a “legend.”
The girls remember growing up with a dad who lived to the rhythm of music. “He’s a drummer,” Tricia said, “so I loved growing up hearing music in the house.” Brianna remembers the way he would wait for his favorite song to finish playing on the car radio before he’d come in from work. And they all remember that moment when their whole family was in the car, Prince was blasting on the radio, and they were singing aloud. At a red light, their dad got out of the car and started dancing. “We couldn’t believe it,” Sharon laughed. “We were cracking up.”
And, so, when their dad got Parkinson’s in 2002, they were shocked. Sharon, who was 28 at the time, cried. “I didn’t know what to expect,” she said. Tricia, like all of them, thought it couldn’t possibly be true: “Not my dad,” she thought. “He’s too awesome.”
These 22 years of Parkinson’s have not been easy or wished for, but they have brought unexpected blessings. Their family has always been tight-knit, but they all agree this journey has brought them closer. “It has made us more open,” Brianna said, “than we may have otherwise been.” And Sharon, who now works out with her dad in her home gym about once a week—often while cranking Led Zeppelin—has found a deeper sense of gratitude in their time together. “I see Dad in a different way,” she said, “and realize he’s not invincible. So I cherish every moment together.”
They’ve also seen firsthand how Parkinson disease (PD) impacts an entire family. Brianna explained, “The only constant in PD is change, so everyone impacted has to learn to adapt.” She praises her dad’s—and her whole family’s—openness to getting creative and flexible as pivotal to helping them navigate the unexpected.
Today, all four daughters are committed to sharing their experiences and lessons with other families, including adult children like them. They’ve learned the value of working closely with a movement disorder specialist, and encourage family members to try to attend appointments when they can. Sharon said, “My sisters and I all take turns attending with our mom (Dad’s main caregiver) for support and an extra ear.” In fact, Christina encourages families not only to attend appointments, but to “write down everything…Take notes at doctors visits, write down patterns and observations at home.” As Brianna added, “It has come in handy for us over the years.”
In fact, Tricia shared the power of truly becoming a self-advocate and learning as much as you can. “Don’t be afraid to research and ask questions of the doctors,” she said. “We got my dad on very new meds because we inquired after reading about people in Australia. Knowledge is power.” And so is community. By creating spaces like Tony’s Instagram page or joining a support group, people can pool their knowledge and personal stories in a way that leads to innovation and, most importantly, better living for everyone impacted by this disease.
And, of course, they recommend exercise. Whether it’s tai chi (which Tony loves), taking a walk in your neighborhood, doing yoga or dance or boxing—movement is medicine. “See if there’s an activity you can enjoy with your parent,” Sharon said. When we move together, we sprinkle in an extra dose of nourishing love and care.
The reality is: This disease is tough. Just as much as there are going to be wonderful days, there are going to be hard days. “Be prepared,” Sharon says. “Just when you have things figured out, something changes. In my experience, it’s a rollercoaster.”
This is why it’s key for care partners and adult children not only to help their loved ones live well, but to offer compassion and care to themselves, too. “It takes a team,” Sharon said, “so give support to your parent(s), but also get support from wherever you can. I don’t know how we would navigate this without each other.”
If you are the main care partner, Sharon says, “Please take care of yourself. There are plenty of resources available. If you are not the main caregiver, make sure to support them and give them breaks. Caregiving for this disease can become incredibly tough, emotional, and stressful.”
This is part of their mission, too: to show all sides of living and loving someone with this disease. To bring light and joy; to empower others to get moving in the ways that make them smile; and to show people what a full life—up, down, and everything in between—with Parkinson’s looks like. Because just as much as there is hardship on this journey, life is here, too, ready to be lived together.
