The first time Rebecca Gifford met her future husband, Larry, she had just come out of the bone marrow transplant ward after having cancer, non-Hodgkin’s lymphoma. She was 23 years old. Her hair, previously shaved from cancer, had grown back “just enough,” she said, “maybe half an inch.” This was the first time she decided to go out socially without anything covering her head. She thought, “I’m just going to throw on a dress and put a little makeup on and go.”
They met at a picnic, a picnic she had been to many times over the years. The family she grew up across the street from hosted it every year on Memorial Day and David, their son, had just returned from college with his college roommate, Larry. But Rebecca and Larry didn’t hit it off—“at all,” she said, laughing. “There’s a picture of us sitting next to each other at a picnic table. We ate lunch together, but we don’t really have any memory of it.”
Over time, Rebecca and Larry would bump into each other when she’d fly in from New York City, where she was living, to visit her parents in Dayton, Ohio. One night when she was in town for her grandfather’s funeral, David invited her to a bar. Larry was there. They spent the evening talking about life and death. And then it happened: sparks.
They began writing emails to each other. A long distance romance ensued. “We got each other,” she said.
Today, Rebecca has been cancer-free for thirty years. But she believes there are no coincidences. Decades later, when Larry would be diagnosed with young onset Parkinson’s disease (YOPD), Rebecca felt a kinship that stretched all the way back to her cancer experience. “Even though we were diagnosed with very different diseases at different times of life, I understood what that felt like. The underlying trauma of it, the chronic nature of it, the relentlessness. How the people around you can react in beautiful and challenging ways.” She went on, “But his Parkinson’s will be here forever.” Facing the eternal together, they are learning not only how to re-imagine their work and their family, but the ways they connect to each other.
A family photo from the Gifford’s trip to Japan for the World Parkinson’s Congress in 2019.
From a trip for their 20th wedding anniversary to visit the block Rebecca lived on while she and Larry were dating.
Larry put off going to the doctor as long as he possibly could. He and Rebecca, along with their then six-year-old son, had recently moved to Vancouver, British Columbia, for his new job with a media conglomerate. It was their first time living outside the United States and they were still adjusting. By the time he went to the doctor, his diagnosis was undeniable: Parkinson’s disease. He was 45.
When he got the diagnosis, Rebecca’s “emotional muscle memory” kicked in. “Something I had learned from my cancer experience is taking things one step at a time. What do I need to face today? I didn’t look too far ahead and didn’t allow myself to surmise too much about what the future held.” Today, that’s the advice she offers other care partners: “Don’t force yourself to barrel forward and take in all the information at once.”
For a year, she moved through the experience with a “little bit of denial.” Larry was still doing well. He started a podcast to engage with the Parkinson’s community. But as Rebecca began listening to the conversations he was having on his show, gaining perspective on how people face the disease differently, she realized she needed to “go through the process of accepting whatever this disease was and whatever it may look like.” Slowly, she started looking at the bigger picture of what Parkinson’s meant for them.
Over time, Rebecca said, “Larry’s ability to do certain things changed. His ability to go certain places. He had to think about the ons and offs of his medications. Parkinson’s started to become more present in our lives, more of a tangible experience. That’s when I knew I needed to do some work around this: How can we maintain our relationship? What can we do as parents to support our son through this?”
When you or your loved one is diagnosed with Parkinson’s at age 45, it disrupts your lives. “Young onset Parkinson’s disease hits,” Rebecca said, “when you’re supposedly in the peak of your career, when you have the most earning potential, when you often have kids still at home, when you’re still juggling a full life and still have parents living who are also aging and dealing with their own health challenges.” For Rebecca, that means that her baseline stress level for all the things everyone deals with at that age starts higher. “It doesn’t mean you’re overflowing or burning out,” she said, “it just means that your baseline stress level is higher first thing in the morning.” She believes you learn very fast that you have a choice: to do the self-care you need or not. “If you don’t, and I’ve been guilty of this, it will come back on you really fast through physical issues, stress, burnout, through not being a very nice person around your loved ones.”
In the movement disorders community, we often say that if you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s. The experience is different for everyone. Rebecca insists this is true for care partners, too. “Our experiences are going to be different from our friend who’s a care partner, or different from anyone who’s in the public sharing their story. Allow yourself the grace to experience it in your own way and to take care of yourself in your own way.” She went on, “If it bothers you that people start telling care partners that they need to take care of themselves, but that’s really difficult for you, figure out the way that self-care works for you. Listen to that voice. Allow yourself to be authentic in your own care partnering.” Your self-care doesn’t have to look like anyone else’s.
For Rebecca, this also means giving yourself grace on tough days—“on the days you don’t feel like you’re being a ‘good’ care partner, on the days you feel like you’re failing.” On those days, she says, it’s okay to say, “This is where I am today. This is all I can do today. I’m still doing a great job. Tomorrow is a different day.”
The more Rebecca listened to her husband’s podcast, When Life Gives You Parkinson’s, the more she noticed a need. Rebecca, who’s a writer and writing coach, said that writing “just makes sense” to her, but speaking extemporaneously—one of her husband’s gifts—didn’t come naturally. “But I felt compelled,” she said, “to make the care partner voice a larger part of the podcast.” She started getting involved in more episodes and began “getting a bird’s eye view of how care partners are seen and valued—and sometimes not valued.”
Today, alongside developing writing workshops for people impacted by Parkinson’s, including care partners, she’s started to call herself a “care partner advocate.” “We need to make sure our voices are heard in the community and in organizations,” she said. “To insist that we’re not just considered an appendage, someone who comes with the person who matters. We’re having our own experience with Parkinson’s and we have our own unique needs…which means we need our own support, separate from the person with Parkinson’s. We need programming that helps us deal with this as a person, not just on how to be a better care partner to your person.” Often, movement disorder organizations will say that when someone gets diagnosed with Parkinson’s, the whole family gets diagnosed. Rebecca wants to make sure that organizations are “actually living by that phrase.” Speaking directly to care partners, she said, “If you don’t feel like you’re getting what you need, ask for it.”
When Larry and Rebecca first felt sparks at that bar in Dayton, Ohio, they slowly built a relationship across 600 miles. They founded their love on communication, on long emails back and forth. “It’s how we expressed our love for each other, and it’s our nature as people and in our professions.” But as Parkinson’s has begun to more noticeably impact Larry’s communication “in being able to engage, focus, and say what he means; in being able to find the words,” they’ve had to “unlearn and relearn” their relationship communication.
“This is the biggest challenge that we have faced in our marriage,” she said. “We’re both going through a grieving and acceptance process. We’re learning how to support each other through it, when to insert yourself and when not to.” She went on, “It’s really easy when you’re having a mutual experience to think it’s the same, but we’re both having our individual experiences and we’re going to deal with it differently. It can feel very lonely and isolating if your experiences don’t overlap. From very early on, we knew we needed to think about that, making sure we’re reconnecting and finding mutual ground.”
There are days when they both deal with guilt. For her, the guilt of sometimes wanting to do something that has nothing to do with Parkinson’s. The guilt of wanting to spend a whole day away from her family, not thinking about what she has to do at home. For him, the guilt of the way his illness is impacting his family. “We’re learning how to express that with each other,” she said. “And also learning when it may not be a good time to say it or maybe it’s something you don’t want to express for quite a while.” When it’s needed, she’s finding other outlets to express her experience, with friends or in a journal. For Rebecca, relearning the flow between them “is like learning a new language.”
At the end of our conversation, I asked Rebecca what she loves most about Larry. “Mmmm,” she said, then paused. “I’m starting to tear up. I don’t even know how to put it into words. Larry is one of the most comfortable people I know, most comfortable with himself. He knows how to make himself happy, but he’s also good at reading a room and figuring out how to bring joy and trust and comfort into that room. He wants to contribute in a way that is meaningful and that matters, for the community and the people he loves around him. He’s so authentic and real. I walk into a room and I know that here is this lovable, trustworthy, trusting, real, authentic person in front of me and I never question his motivation. He just is who he is and he brings that big, loving energy into everything he does.”
Parkinson’s undoubtedly changes a marriage. But love—that can endure. If we don’t hold too tightly to what was, we can let ourselves morph and flow with what is, rediscovering our love in new ways right here, right now.
