“When I first found out in 2018 that something was wrong with my brain,” Kay Arvidson said, “I thought it was breast cancer returning to my brain.” So when she went to her doctor, the last thing she expected to hear was Parkinson’s. As her doctor relayed the diagnosis, she felt herself swirling in a haze of fear and uncertainty. All she remembers were the words “progressive,” “degenerative,” and “no cure.”
Immediately, Kay went to the library and checked out several books on Parkinson disease. She read about the disease’s different stages, that it was incurable, and how it progressed unrelentingly. Kay was only in her 60s, but she said, “I felt like my life had been taken away from me.” Kay was at a loss for what to do or how to get out of the funk that descended after her diagnosis. “I didn’t want to be negative,” she said, “but I couldn’t be positive. I didn’t know what was going on. I didn’t know anyone who had Parkinson’s at that time. I felt very much alone.”
All that kept coming to her mind was an image from decades earlier. When she was in high school, she worked at a pharmacy. A man with Parkinson’s would come in regularly. “He was old and frail and smoked cigarettes,” Kay remembers. “I kept thinking about him, about how much he would shake. It’d be hard for me to check him out at the register because he couldn’t handle his money; he was shaking too much. ‘This is the end,’ I thought. ‘This is how I’m going to end up.’ It made me very, very sad. I just didn’t want to do anything.”
But that’s when she encountered an unexpected blessing. Her doctor suggested she attend a big Parkinson’s conference in Iowa, where she lives. The first table she came across at the conference was Medtronic, a medical device company. The Medtronic representatives told her about deep brain stimulation (DBS) surgery. She knew from that moment that she wanted the surgery. She hoped it would change her life.
To most people, DBS surgery can sound terrifying—it is brain surgery, after all. As Kay explains it, in DBS surgery, “electrodes are placed into your brain on the basal ganglia, the part of the brain that stops producing dopamine when you have Parkinson’s.” The basal ganglia is small, about 10 cubic centimeters, or the size of a gumball. “Once the electrodes are in the brain, a battery pack is installed, similar to a pacemaker, and it stimulates the brain and controls the tremor.”
When Kay first learned of the surgery at the conference, she was hopeful but her diagnosis was still so new. She’d have to wait until her disease stabilized for her to be a candidate. But she didn’t waver in her desire to pursue DBS. “I was having a lot of dystonia and dyskinesia,” she said. “I did not want to live my life like that.” So while she waited to be approved for the surgery, she dedicated herself to learning as much about the procedure as she could. “I wanted to be prepared,” she said, “and not afraid of it.”
By 2020, it was time. She scheduled the surgery for October and made a plan. Kay, who doesn’t have a partner, arranged to stay with friends after the surgery, one of whom is a doctor: “I wanted to be around people who would know what to do if something went wrong. I didn’t know if I’d be able to walk or talk or if I’d do strange things like start saying ‘refrigerator’ when I meant to say ‘water.’”
A couple days before the surgery, she got her hair buzzed, the standard last preparatory step before the big day. She was ready to go.
The day before surgery, she got a call: Her procedure was canceled. It was the height of the pandemic and the hospital was full. She’d have to wait 6 more months to try again.
Kay had planned on working late into her 60s but after her diagnosis, she realized she needed to focus on her health. At age 65, she retired. Right before she left, a coworker gave her a gift—a bracelet with a quote from the beloved writer Maya Angelou: It said, “Still, I rise.” “It has become my mantra,” Kay said. “If I have a bad day, still, I rise. When another symptom comes along, still, I rise. Every day, no matter what happens, still, I rise.”
So when she had to linger in the uncertainty of her impending DBS surgery for 6 months longer, she didn’t waver. She looked at her bracelet and remembered: Still, I rise.
And she did. The results she spent years hoping for were evident immediately after the procedure. “It’s amazing,” she said. “I don’t shake anymore. It improved my movement.” Most importantly, she said, “I got my life back.”
It felt like the world was opening to her. Not long after her surgery, Kay came across a quote that spoke to her heart: “The purpose of life is to find your gifts; the meaning of life is to give it away.” In that moment, she knew: She wasn’t that scared woman from four years earlier who was newly swirling in the haze of her diagnosis. She was resilient. She knew her own strength. Again, it was time: “I decided to give my gifts away to Parkinson’s.”
Kay dove into the Parkinson’s community, joining the Twitchy Women group for women living with Parkinson’s, joining the board of a Parkinson’s organization in Iowa, and becoming a Medtronic ambassador. “I wanted to talk to people about DBS,” the procedure that has changed her life and, she hopes, might change theirs, too. “I want them to know it’s not as scary as it sounds. In fact, it’s life-affirming.” She spreads her message by speaking at support groups, on podcasts and webinars, including a DBS webinar and panel discussion with PMD Alliance. “I feel like DBS is the only thing that addresses the cause of the problem, and not just the symptoms,” she said.
Giving her gifts away has given Kay new life, too. “This is how I live well,” she insists. She has discovered her own inner abundance—and the way we bloom in community.
Going through DBS has reoriented Kay towards joy. After the procedure, her hair was buzzed short from the surgery and she thought, “If I’m ever going to do it, this is the time.” She dyed her hair blue! Looking in the mirror, she’d smile at her simple but radical act of choosing joy.
Kay also realized that, as she said, “I have much more power in my life than I ever realized…When you live with an illness like Parkinson’s,” she said, “you think you lose your control. But you don’t. You still have control. You still have power. I like to assert that in my life as much as I possibly can.” Kay was saying that, no, Parkinson’s is not something any of us asks for and, often, it is unruly. But you still have agency in responding to it. For Kay, that means focusing on her attitude and her exercise. “This fuels me,” she said, “giving me strength and endurance.”
She has also noticed kindness all around her. She remembers going to the grocery story one day when her Parkinson’s was noticeable. “I was getting out of my car,” she said, “and the stranger across from me asked if I could use a cart to help me walk. A stranger offering to help me has happened so many times since.” And it has shown her that, sometimes, all it takes to care for our neighbors are simple acts of kindness.
Kay is committed to passing on the kindness she receives. When she talks to others with Parkinson’s, she reminds them of their inner strength. “You can fight this disease,” she tells them. “You’re not going to let the disease win. Some days, it’s a challenge. And it’s appropriate for it to be a challenge; this is a devastating disease. But you have a choice: You can let it define you or you can define it.”
She knows firsthand how natural it is, especially when you’re newly diagnosed, to feel depressed, to want to disengage from your life and the people you love. “Remember,” she says, “You have much more power than you think. Approach the illness with a positive attitude and make accommodations in your life. And, no matter what, just keep going.”
She promises: still, you can rise.
