For seven years, Deb and her husband, Gary, kept his Parkinson’s a secret. It was 1985, thirteen years before Michael J. Fox would announce his own Parkinson’s diagnosis, which would bring PD into public view, and decades before reliable information about the disease would be available at the click of a button.
Gary was 35 when his strange symptoms were officially given a label, a shocking diagnosis, they felt, for someone so young. When he eventually made his way to UCLA Department of Neurology for care, his doctor called him a “live one,” his “case study,” because he had never seen someone with young onset PD before.
And, so, they bore their secret together, not telling their family, their parents, their kids, or their colleagues. Afraid of losing his job, Gary would try to sit on his hands at work to keep anyone from seeing them shake. Internally, he struggled. He would try to lead meetings and couldn’t keep the agenda memorized in his head. At the time, the computer didn’t dominate work like it does today, and Gary increasingly couldn’t hand-write legibly. “Our secret,” Deb said, “was overwhelmingly stressful.”
Deb remembers Gary driving down the freeway with her beside him and their children in the backseat when his left foot would start tapping the car. When their kids would ask why Dad was doing that, they’d say, “Dad’s just keeping time to the music.”
Parkinson’s Affects the Whole Family
At PMD Alliance, we often say that if you’re a care partner, you’re living with Parkinson’s, too. For Deb, her world was also upended when Gary was diagnosed. It became their secret to carry.
When Gary was diagnosed nearly 40 years ago, Deb said “the panic and fear immediately set in.” They had been building their lives together. She was a stay-at-home mom raising a three-year-old and seven-year-old. Parkinson’s changed their trajectory.
“The next day [after Gary’s diagnosis], I marched myself down to Chapman University and signed up for the teaching credential program. We didn’t know much about PD at the time and I had this fear I was going to be a single mom supporting two children.”
And they didn’t really want to know what was ahead—that is, they had a strong sense where this disease was going to take them, but they didn’t want to see it yet. “We didn’t join a support group,” Deb said. “We didn’t want to know our future. In that way, we stuck our heads into the sand.”
She went on, “We didn’t lean on anyone. We didn’t talk to anyone about it. I didn’t even want to sit down and tell him, ‘I’m so scared.’ There was no outlet.”
A Shared Secret
Gary had a feeling they weren’t the only ones trying to keep a secret. “We would watch Spin City,” Deb said, “and Gary would say, ‘Deb, watch. I think he [Michael J. Fox] has Parkinson’s.’” Gary noticed Fox trying to hide his symptoms, standing behind a desk, putting his hands in his pockets. It felt ominously familiar.
Seven years is a long time to hide. By age 42, Gary took a medical retirement. Deb started teaching just in time, three months before he stepped away from work. Their roles reversed: he became the one who packed the kids’ school lunches and drove carpool. Deb has a feeling he liked it, but they didn’t talk about it a lot. “It was just what had to be done.”
Gary would live 34 years with the disease, offering their family “a lot of good years” together. They were cautious, but they traveled, they went camping with their kids. They lived and they loved.
People Need Help Now
Today, a few years after Gary’s passing, Deb is an ambassador for PMD Alliance and a monthly donor. She says she’s committed to supporting other care partners because she wants to provide them the support she never had. “If I can reach one person, it’s worth it. There’s a young mother being diagnosed right now and she’s going to be beside herself about what to do.” Alongside PMD Alliance, Deb wants to help comfort and guide them, past the misinformation and the fear mongers and into the arms of community and support. “They didn’t sign up for this,” she said. “Nobody did.”
Deb continues to give to PMD Alliance and serve the Parkinson’s community in memory of her husband and because she believes in the organization’s mission. “PMD Alliance is the boots on the ground. People need help now. It’s nice to dream of a cure, to dream that someday this can go away. But, in the meantime, what do you do? How do you get your meds to work? How do you deal with OFF time? Do you have to remodel your bathroom for a roll-in wheelchair? Do you have to give up traveling?” For Deb, PMD Alliance’s in-person programs, webinars, and resources provide the tools people with Parkinson’s and their care partners need to thrive today. This is essential.
The Power of Community
Gary passed away three and a half years ago. By that time, he was living in a memory care assisted living facility. “You dread the death phone call,” Deb said, “but I started grieving even before I put him into care. We’d be having a meal together and he’d look at our neighbor’s roof and say, ‘Someone has to call the police. There’s someone on the roof.’” Deb says she started doing “therapeutic fibbing,” where she’d pick up the phone and pretend to call the police. This—her husband’s unfamiliar and distant presence—was deeply lonely and an intense loss. “I had to grieve when the day came that he didn’t know who I was.”
This is why Deb is more adamant than ever that leaning on those who “get it” is critical. “I look back and think, ‘I should have done all these things differently.’ But you can’t do that; I can’t beat myself up. Instead, I will offer this advice to others: ‘Do not make it a secret. You’ve got to reach out. You’ve got to be as open as possible. Discuss it, learn together, attend support groups…There are times when you feel like you can’t go on one more day, but then you connect with someone who’s been there, too.” That gives you the strength to go forward.
We are meant to walk this journey together. Deb continues to show up for care partners so she can remind them: even on your hardest days, you’re not alone.
Help the helpers
PMD Alliance educates, empowers, and connects the Parkinson’s and movement disorders community, uplifting the lived experience and passion of ambassadors like Deb. We walk alongside local leaders, ensuring that every gift to serve the PMD community has national reach and community driven, local impacts.
A donation of just $25/month provides education for one household, connecting them with weekly, free, expert guidance from movement disorder specialists.