Eleven years ago, when Ana María Tamayo’s husband Ray was diagnosed with Parkinson’s by one of the top neurologists in Lima, Peru, where they live, he told them, “Don’t tell anybody. People won’t understand and you don’t want them to look at you differently.”
“We heard him,” Ana María said, “But deep inside, what he was suggesting didn’t feel right.” Something in her knew that not sharing would only feed the isolation, that keeping it silent wouldn’t help them make meaning of their lives with PD.
Since then, Ana María has spent many hours learning and getting curious in order to make sense of what she calls “this chaotic experience” of Parkinson’s. And she has discovered a revelation: life is chaotic. Parkinson’s even more so. It is a disease that requires constant adaptation. The secret, then, is not to fight it, but to embrace it: what happens, she wonders, “if we become open to the changes, if we realize uncertainty is necessary?”
What happens if we embrace the complexity of life?
Building a Bicultural Family
Decades before his diagnosis, Ray traveled from Ireland to Peru. “He had never left Europe before,” Ana María said, “didn’t know a word of Spanish, but he came here to learn.” He came as a student and a missionary.
“I met him at the university,” she said. He was studying for a Master’s degree in sociology and she was studying anthropology and sociology. They shared a class. One thing led to another until, eventually, they were married.
“For twenty years, Ray was a Catholic priest,” Ana María explained. “Except he wanted to find his own way, not work within the institution. So he was a priest in the shanty towns of Lima, Peru. He’s always been very curious and very open, he worked with his hands in the countryside.” Mostly, though, he loved what Ana María called “hanging with the youngsters…He loved sharing poetry and literature to enhance people’s lives. He enhanced so many lives.”
What to Say when Dad has Parkinson’s
Parkinson’s started slowly. Ray’s symptoms were mild and not very visible at first. Ana María and Ray kept going with their lives. But as their two young children tried to make sense of their dad’s new diagnosis, they were fearful and struggled to understand.
At the time, Ray was also experiencing seizures from epilepsy, another brain disorder, and his two-year-old daughter, Sophia, thought at first that he was playing, that it was a game. Their older son, Patrick, looked on with worry.
As the kids got older, Ana María and Ray made a commitment to open dialogue, with each other and with their children. And when Patrick suddenly began to worry: what if it’s genetic? What if I inherit it, too, they got him the support he needed.
As Ana María explains, Parkinson’s impacts the whole family.
When Doctor Visits Aren’t Enough
Their challenge was that this emotional impact on the family wasn’t being talked about anywhere else. “I have spent hours,” Ana María told me, “surfing the net for information about Parkinson’s to try to understand what is happening to Ray in his body and emotionally, but also to understand what is happening to us as a family. I’ve wanted to make sense of our experience, which, in some circumstances, is one of intense emotionality and discomfort.”
In fact, surfing the Internet from her home in Lima is how she found us: she navigated her way to PMD Alliance, to our supportive online communities, which she joined, and then to our In Sync!® Support Group Leader trainings.
She has found these explorations and connections with community to be pivotal. “We’d go to the doctor once every three months or six months for 20 minutes. A 20-minute appointment is not enough to understand what’s going on, especially with his non-motor symptoms, like mild depression and anxiety.” In fact, Ana María insists that Ray “continues to evolve,” that Parkinson’s is a “completely new internal experience that affects how you feel, how you think, how you connect with people. It affects everything.”
In Ana María’s eyes, their brief doctors’ visits which focus on the medicine couldn’t possibly cover everything she and her family need to live well and make sense of their experience.
What people need, she insists, are tools to navigate change.
Expanding Access to Resources
Ana María believes she’s lucky. “Because I live in a city like Lima, not a rural area, I have had more opportunities to educate myself. Because I can read and speak in English, it gives me greater access to the newest Parkinson’s information, information that’s not necessarily accessible in Spanish yet.”
She has been able to explore new tools and resources that extend beyond medical information and go to the heart of what it means to live with Parkinson’s. She’s been able to connect with people across the globe. This is not a privilege granted to all.
She and Ray are now on a mission to begin expanding that access. Recently, they hosted their first virtual meeting for people with Parkinson’s and their loved ones. The group of twelve that attended were given time to talk in smaller breakout groups and, what Ana María realized, is they were craving this time together. “They wanted more time to talk,” she said, “because the traditional way to educate is that one person speaks and 20 people listen. We want to change that perspective.”
She went on, “People are so used to being looked down on from a medical perspective or a top-down perspective, and we want to give them the space to be heard, to be seen as an individual with richness.”
In fact, Ana María and Ray envision this virtual support space as an opportunity for people to begin to explore, together, what it means to navigate change. “We’re not trained to ask questions about our own lives and to look inside, so we want this to be a learning experience about tools to enhance their adaptive capacity.” These are the tools, she insists, she and her family have been working to implement in their own lives.
They want to support people impacted by Parkinson’s in expanding their thinking: life with PD isn’t linear. It can be surprising and uncertain and complex. The question becomes: how do we respond to this? How do we cope?
Explaining the power of exploring these capacity-building inner resources together, Ana María explains, “Learning these tools in community, that builds resilience. It takes us from a sense of fragmentation and tension into meaning. It’s so important for us to nurture our communities.”
Navigating PD as Partners
As Ana María and Ray explore their new roles as facilitators in their movement disorders community, they insist they don’t want to “be like role models.”
“I attend webinars sometimes when care partners give idealized versions of their experiences. And that’s just unreachable. Who can live that?” She wants to be real.
As she told me this, she paused and said, “I have to show you something we shared at our virtual meeting the other day.” She got up and walked away from the computer screen, leaving their dog Max to look up from his spot by her feet on the floor.
When she came back, she was carrying boxing gloves. She laughed: this was how they showed the other families in attendance that she and Ray spar sometimes, too. Life is messy and they don’t want to be idols. They want to create courageous space for the truth of partnership, including partnership with PD.
In fact, Ana María feels partnership is mutual, which is why she doesn’t identify with being a caregiver. She believes they’re a unit, leaning on each other and lifting each other up. “I take care of him, but he also takes care of me.”
When I asked her to give me an example of how Ray takes care of her, she smiled. “For example,” she said, “when I’m working on the computer, he brings me a pancake or tea or a snack. Or when there’s a possibility for me to spend some time with friends, he’s always willing to have me go and enjoy.”
This is not an easy journey and Parkinson’s shifts relationships. “Our love, it has shifted,” she admitted. “But it has shifted with bitterness and with brightness.”
They’re still growing together, reflecting together, just as they did all those years ago when Ray was a young priest espousing poetry and she was a student, curious and exploring the world. This is just a new season in their love.