In 2018, Kathy Bovino went to the doctor to discuss her migraines. “I was just going over my medications,” she said. “And at the end of the appointment, I added, ‘By the way, I’m having this little twitch in my finger. Does that have anything to do with migraines?’” Her doctor invited a movement disorder specialist into the room, who performed a few tests and then asked Kathy to walk back and forth. As Kathy paced toward him, he said, bluntly, “Unfortunately, you have Parkinson’s.” It hit her like a ton of bricks.
Kathy wasn’t new to Parkinson’s disease. Nearly two decades earlier, she watched her husband Mike care for his dad with Parkinson’s. Sitting in that doctor’s office, hearing she had Parkinson’s disease, all she could think was, “Oh, my god, now Mike’s going to have to do it all over again.” She burst into tears.
When I spoke with Kathy and Mike, they had just arrived home from what she called a “trip of a lifetime”—two weeks in Hawaii to celebrate their 30th wedding anniversary. The pair met in 1991 at the Special Olympics Winter Games in Copper Mountain, Colorado. Kathy was a teacher who was volunteering and Mike worked for Special Olympics International. As Kathy tells it, “Several people at those winter games felt like we would be a perfect match. So they made sure that, throughout the weekend, we were in the same places at the same time.”
Two weeks later, Kathy flew from her home in Colorado to Washington, D.C., to visit Mike. “We definitely clicked,” she said. They dated long-distance for six months before taking the leap: Kathy moved to D.C. to be with him. They’ve been together ever since.
The feeling I got from Mike as we spoke over Zoom is that he’s a sensitive soul, a loving and grounding partner for Kathy. They were kind and patient with each other, never talking over the other. As Kathy retold her diagnosis story and started to cry, Mike quietly wrapped his arm around her shoulder.
When Kathy drove home from her doctor’s appointment in 2018 and told Mike the “earth shattering news,” she worried about being a burden. She remembers Mike’s dad, hunched over as he struggled with his fine motor skills and living with Lewy Body Dementia in his last years. The movement disorder specialist had tried to allay her fears. After inadvertently making Kathy cry with his blunt diagnosis, he wrapped her in a hug and said, “Parkinson’s today is nothing like it was 20 years ago.” Still, her uncertain future hung heavy in her mind. “It wasn’t fair,” she said, for Mike to have to go through it again.
But Mike was unwavering. “Don’t worry,” he said when Kathy told him her diagnosis through tears. “I am here for you.”
The Bovinos’ cat, Henry
When Kathy and Mike talk about what it’s like to live with Parkinson’s, they’re sincere and honest. This includes Kathy’s invisible symptoms. When I asked Kathy what her anxiety feels like, she said, “It’s all-encompassing…I just want to stay in bed and do nothing. I don’t even want to take my meds…It’s kind of terrifying.” In fact, when her anxiety is at its worst, she feels trapped in her body and wants to withdraw from everyone, including the people and things she loves the most.
Her anxiety can show up in many ways, both in ways that make sense to her and, sometimes, in ways that don’t. Kathy often starts the day feeling pretty good and this feeling trickles into the early afternoon. But by dinnertime, her symptoms, particularly her tremor, are “ramped up,” making eating difficult. “I get anxious,” she said, “especially if we’re going out to dinner with other people. With Mike, it’s okay. But with other people, even really close friends that I know don’t care, my anxiety creeps in because I get messy and I have to lift the plate up to my mouth to eat.”
Then there are times when her anxiety is “crippling” and, she said, she has “no rational reason for feeling the way I do.” Earlier this year, Kathy started taking a dance class for people with Parkinson’s. As Mike explained, “she loves it. There’s never a time where she doesn’t come home happy. But the anxiety can sometimes get so gripping that even with the joy she knows it’ll bring, there are days when she decides not to go.”
“He’s right,” Kathy jumped in. “I feel so great when I’m there; it’s like a family.” On the days she doesn’t go, it’s confusing even to her. “It’s like there are two little people battling inside my head, one saying, ‘Go, you love it. What’s wrong with you?’ and the other saying, ‘No, I just want to stay home. I’m safe here.’” In these moments, Mike listens closely to Kathy. He never dismisses or admonishes her for not going. Instead, he tries to listen for the moments when he can encourage her to venture out. “Mike is really good at knowing when I need to be out there and interacting with someone, whether it’s a barista or a checkout person or a friend or just nature,” Kathy said. “He knows when to gently encourage me and when to leave it alone.”
When Mike encourages Kathy to step beyond her comfort zone, he has his dad in the back of his mind. He remembers doing everything he could to get his dad out of the house. But toward the end of his life, his dad became self-conscious about his “frozen” facial expression and started to retreat from his social life. Always a big walker, he stopped walking. The more he withdrew, the more his health spiraled downwards. Mike doesn’t want this for Kathy. “My message [to other care partners],” he said, “is that the most important thing you can do is be present, be empathetic, but also really promote engagement. Make sure you push your person a little bit beyond their comfort zone.”
Kathy and Mike don’t make concerted efforts to talk about the future—they understand that no one with Parkinson’s is the same and that, no matter who you are, your future cannot be predicted. But it comes up. Recently, after redoing their living room, they were browsing La-Z-Boy for two new recliners. The most comfortable recliner Kathy found for herself happened to have a feature that lifts you up and helps you stand. She turned to Mike, “I don’t need that.” Mike took a beat and said, “Well, it might help in the future. We don’t know.” So they talked about it. Kathy realized she might need it, she might not but, either way, the chair was comfortable. They took it home.
Their conversations about the future don’t need to be overwhelming or scheduled in advance. But they remain aware of it and unafraid to talk it through together.
The past five years have underscored Kathy and Mike’s partnership. When I asked them what they’ve learned about each other along this Parkinson’s journey, they agreed: they haven’t learned something new so much as deepened their love and admiration for each other. For Mike, it has amplified Kathy’s “big heart,” her “grace,” and “resilience.” For Kathy, she’s witnessed more profoundly Mike’s “supportive nature, understanding, and how he wants the best for me.”
But it is sometimes only through life’s darkness that we can emerge into deeper understanding. In January, on the fifth anniversary of her diagnosis, Kathy had what she calls “The Reckoning.” In 2018, after she got over the initial shock of her diagnosis, Kathy adopted a “chipper attitude.” She said, “I would joke and make light of it as much as possible.” She knew more—and maybe daunting—symptoms could arise down the road but, at the time, she didn’t want to look too seriously at it.
“When my anniversary date arrived,” she said, “I wasn’t consciously thinking about it. Only in retrospect do I realize that it suddenly hit me: I have Parkinson’s and this is serious.” She confronted her reality: “You’re not going to get cured,” she thought. “You don’t know what symptoms you’re going to get.” For six days, Kathy stayed in bed and cried. “It was just this stunning realization that I finally came face to face with.”
One day in the midst of this, she decided to pull out her phone. She started reading about Michael J. Fox, her idol. She realized that he didn’t always have what she called a “rah, rah, rah, I can conquer this” attitude. “Sometimes it sucks,” Kathy said, “and that’s just it.” Without leaving her bed, Kathy decided to text a few close friends what she was feeling. “Slowly,” she said, “I crawled out of my hole.”
As she emerged, she realized she couldn’t do this alone. “I knew no one with Parkinson’s,” she said. “I thought, ‘You’ve got to become part of a community. You’ve got to take action.’” She did. Kathy got connected with a dance group and a boxing group. In her dance group, she was moved by being seen and accepted as she is. “There’s so much care there,” she said. “It’s amazing. Somebody with tremors will help you put on your socks. That sounds so little, but it’s not. It’s a beautiful thing.”
Kathy also began to feel comfortable telling it like it is. “Because you don’t have to sugarcoat it,” she said. “You can be mad about it. It’s better to feel your feelings and get them out.”
Since The Reckoning, Kathy and Mike have shared their perspectives as panelists at PMD Alliance’s national conference for healthcare providers, called Advanced Therapeutics in Movement & Related Disorders (ATMRD). “And we’ve gotten to do this,” she said, referring to sharing their story. “It’s made a huge difference for me.”
If you ask her today, Kathy wouldn’t take back the pain of confronting her darkness. She is more resilient now. And she is not alone. She has emerged into her community’s nourishing embrace.
