When I asked Stephanie what she misses most about Rick, her husband of 34 years who passed away with Parkinson’s disease last December, she took a deep, sighing breath. “I miss his laugh,” she said. “He had such a great sense of humor.” But even more than that, she misses the simple things, those everyday moments quietly filled with tenderness: “going for a walk in the prairie or for a bike ride. Picking out a bottle of wine together for dinner.” It’s the little things. “I miss him deeply,” she said. “It feels like a part of me is missing.”
When Stephanie answered the phone to talk with me, she told me she just got home from a strength-based cardio class and that she had recently joined Rock Steady Boxing, a program designed to fight back against Parkinson’s. The boxing class left her uneasy; Rick had done one-on-one Rock Steady Boxing for a couple years and being in class, where he had spent so much time, left her emotionally vulnerable.
But Stephanie plans to continue boxing, not merely to hold Rick’s memory close, but because three months after Rick’s passing, she, too, received those unbidden words: You have Parkinson’s.
Rick was a kind and creative person. “He shared his love through acts of service,” Stephanie said, especially through cooking. “He was the head chef in our family and enjoyed cooking with the season. When the garden was in its full glory, he would use whatever was ripe. When we took trips to Italy to eat our way across the country, he would try to recreate what we ate there.” Though Rick was ancestrally Czech, Swedish, and German, he had a sweet spot for Italian food. Rick was also a potter. “For gift exchanges,” Stephanie laughed, “everyone hoped Rick would pick their name.”
Rick and Stephanie met in 1987. “If Rick was telling the story,” Stephanie said, “He’d have a twinkle in his eyes and say, ‘We met at a place where you go to pick up chicks,’ and he’d wink.” The wink was a joke; as Stephanie put it, they met at “the last place you’d think to pick up chicks: an adult children of alcoholics meeting at the University of Wisconsin Madison campus.” Rick was in graduate school and working on campus; Stephanie was an undergrad. “I think we knew there was something really special between us. After a few months of knowing each other, we knew that we wanted to speed the rest of our lives together.” Two years later, they were married.
Their marriage was one of abiding love. “He was my friend, my confidante, my best buddy, my guy,” Stephanie said. They traveled and became scuba certified together. Rick had two kids from his first marriage and they’d travel with them and, later, with them and their wives and their grandsons. “You know how some couples, when they get back home after a vacation together, they’re ready to go to work?” Stephanie said. “How some couples feel like vacation is too much together time? That was not us. I missed Rick when we’d go back to work. I’d call him and tell him, I miss you.”
When I suggested to Stephanie that they were true partners, she said, “Yes, exactly. That’s a really meaningful word. We were partners, we made decisions together, we explored life together.” One of the hardest losses for her came as his Parkinson’s progressed to include more cognitive impacts: “We weren’t able to be partners in the same way. I feel like I lost my partner because of his disease and that was really, really hard for me.”
When Rick was diagnosed with Parkinson’s in 2010, Stephanie remembers saying to him, “I am committed to supporting you and loving you through this. This is our new normal. We’ll make adjustments as we need to.” In sickness and in health, she was there.
Not long before his diagnosis, Rick retired early from his work at the University of Wisconsin Madison. Immediately, he jumped into volunteering, sharing his time and his gifts at their local hospice organization. “He volunteered in the kitchen,” Stephanie said, adding with a knowing laugh, “Surprise, surprise.” There, he helped establish a vegetable garden. But grief crept into Rick’s life. When his dad died in June 2010, Stephanie started noticing something unusual: Rick was having acute anxiety, which he never had before. His affect became flat, his shoulders slumped, and he was shuffling. When close friends started to express concern to her, she said, “Well, his dad just died. I think it’s grief.” But two girlfriends of hers, who were medical social workers in neurology, lovingly persisted in their concern and Stephanie began to watch him through a different lens. By the time she attended an informational session about Parkinson’s disease at the local hospital, she knew: “They gave us this list of symptoms, and I was like check, check, check, check. I just started to cry.”
Eventually, Rick went to see a movement disorder specialist. By December, it was official: He had Parkinson’s.
Today, when Stephanie thinks back to the unfolding of her symptoms, she can’t help but notice a similarity between hers as his: “His symptoms correlated with grief,” she said, “and mine started around the time Rick transitioned to an assisted living community. Sometimes, it’s hard to tease apart what was grief and what was Parkinson’s. Maybe it was both, together.”
For Stephanie, the scariest part of being a care partner was the continual hypervigilance. “I worried,” she said, “when will Rick fall? I was afraid to take the dog out for a walk. What if I came back to find him on the floor?” She also didn’t realize how deeply his nonmotor symptoms would impact them. “Sometimes, he would be sitting at the dining room table and suddenly his words would get garbled. It would look like he was staring out into space and, then, boom, he was gone; passed out.” The first time it happened, Stephanie thought he was having a stroke. That’s when they learned one of his Parkinson’s symptoms was orthostatic hypotension, meaning, in those moments, his blood pressure would tank. What most terrified Stephanie are the times when Rick would faint when they were home alone, no one else there to help her get him up. As Rick’s disease progressed, he also had trouble communicating. “At times, it was hard to understand how best to support him,” she said. “A lot of it was me doing my best to make a judgment call about what would be helpful in that moment.”
And then there were the little losses along the way. “It was years of that,” Stephanie said, years of small doses of grief. She remembers the loss Rick felt when he recognized he shouldn’t drive anymore. Or the loss of him not being able to go to the bathroom by himself. With emotion in her voice, Stephanie said, “I think he faced these losses with a lot of grace. I saw him get frustrated sometimes, but I never saw him get angry or lash out. He moved forward with quiet grace.”
When Stephanie started noticing symptoms on her right side shortly before Rick died, she thought, “This cannot possibly be what I’m fearing.” She dismissed it as caregiver fatigue or anticipatory grief. But, deep down, she knew: “Because I had so much experience with Rick’s PD, I just knew.” She remembers the neurologist telling her that her experience will not be the same as Rick’s, and not to use his struggles as the map to her own future. “Intellectually,” she said, “I know that. But I don’t have a partner now. That fear of living without a partner with this disease is scary.” Stephanie has a great support system of siblings and good friends and she’s grateful for it. But sadness still lingers: “Rick never knew about my diagnosis,” she said. And he won’t be by her side to face the waves together. “It’s just really sad,” she said.
To deal with her pain, Stephanie is leaning into purpose. “One of the ways I’m channeling my grief and my anger and my WTF energy in the world,” she said, “is by focusing a lot of energy into bringing the Parkinson’s disease registry to Wisconsin.” The registry is a database with information around incidence and prevalence of the disease, looking at who has Parkinson’s, when they were diagnosed, what kind of medications are helpful to support research and clinicians in caring for people with the disease. And to help inform us about environmental factors that may influence the development of Parkinson’s. Stephanie’s advocacy around the registry is a way for her to honor Rick and “to contribute to the greater good.”
Today, when Stephanie thinks about the future, she doesn’t want to get too far ahead. “That scares me,” she said. One of the questions she and Rick began focusing on as his disease progressed was simple, a reminder to be in the present: “What’s important to you right now?” The question became their guide, allowing them to hone in on what really matters. When Rick told her what mattered most to him was family and friends, she said, “Let’s make it happen. Let’s have people over. Let’s invite our grandsons for brunch.” Or they’d focus on their abiding love for each other: “We’d sit next to each other on the sofa holding hands and watching Jeopardy, which is something he really loved,” she said. “Or he loved Dairy Queen, so I’d say, ‘Alright, let’s get your favorite: medium twist with crunch coating.’” They started to do the simple things that brought meaning.
Stephanie wants to do the same for herself. Instead of getting lost in the future, she wants to focus on what matters most now. “I’m just so in love with my nephews and my niece,” she said. “I just want to spend time with them, basking in their sweetness and their discovery of the world…We can make our lives really complicated and it doesn’t need to be that way.”
As we closed our conversation, Stephanie wanted to share one more thing: for her, it’s the Parkinson’s community that continues to nourish her, that continues to offer her their hands, their care, their advice, and their understanding as she navigates this disease on her own. “I am forever grateful to continue connecting with people through this process,” she said. As she said this, she realized her body had responded without her noticing: “Look at that,” she said, “I have my hand pressed to my heart.”
