Adam DePorter was doing an undergraduate summer internship at York Hospital in Pennsylvania when his mom came in for neck pain. She was scheduled to see a neurologist in the same building where he was interning. So with no other reason than that they found themselves in the same place at the same time, Adam decided to meet her there for the appointment. Neither of them were worried; they planned on a relatively routine visit.
But even the best laid plans often go awry. “I don’t think this is your neck,” the neurologist told Lori and Adam as they sat beside each other in the doctor’s office. “I think you have Parkinson’s.”
“This,” Adam said, “opened a can of worms.”
Adam’s mom was in her forties, the mother of three boys, when that first neurologist told her he suspected Parkinson’s. “It’s an old man’s disease,” Adam said of his shock at the time. “When you hear Parkinson’s, you expect the 80 year old grandpa with the shuffling gait.” Early on, Lori’s symptoms were invisible, manifesting quietly not as motor symptoms but as anxiety and depression. Their inability to see it—to make sense of what they had always thought was a very physical—and visible—disease, Adam said, “was confusing and hard for all of us.”
Adam, who was away at college at the time, was the oldest of Lori’s three boys. His brothers, the youngest of whom was in middle school, still lived at home. Repeatedly during our conversation, Adam told me that this was one of the most difficult things the family had to navigate: Lori and her husband grappled with what to share with their kids and how much. It was like a bomb had gone off in their home, a bomb none of them ever suspected. Lori and her husband wanted to acknowledge it while still trying to shelter their sons from the blast, an impossible task.
What Adam remembers most about his mom when he was growing up is that “she was always there.” “That was the big thing,” he said. “She was a very present mom. I remember her being at all our sporting events and extracurriculars. She was the kind of mom who was engaged and involved.”
But in the first year after Lori was formally diagnosed with Parkinson’s, she was set adrift—present in body but not spirit. “It’s painful to admit,” Lori has said, “but I didn’t handle it well. My diagnosis consumed our lives.”
Adam remembers noticing this shift in her: “She wasn’t as engaged,” he said. “She wasn’t herself. I don’t know if distracted is the right word. It wasn’t her fault, but she was not there in the same way she had always been.” She was suddenly thrown off her path, into the wilderness. Her task was to feel through the darkness and find her way back.
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For a few years, Adam and his mom struggled in their relationship. He wanted to be there for her, even if he didn’t know how to help or what she needed. As Adam went on to graduate school to become a Physician’s Assistant, he straddled the line between son and clinician. His mom would send him her medical chart, wanting his opinion on whether she was truly getting the care she needed. “There came a point,” he said, “when I told her I can’t look at another one of her medical notes. It wasn’t helping her and it wasn’t helping me.” He struggled with wanting to help—while knowing the limits of his ability to do so. “I’m not a Parkinson’s expert,” he said. “I’m not a neurologist. My mom would ask me about certain medications and I’d tell her, ‘I haven’t prescribed this medication one time.’” And as much as he wanted to support her, looking at her as a clinician, not a son, was taking a toll on him.
Over time, Adam and Lori have grown through this and grown closer. “Our relationship is better,” he said. “It’s more open and honest. Being through all this, it’s made it easier for us to be more upfront with each other, to communicate.” They’re learning how to show up for each other, how to be present as mother and son. How to be with Lori’s Parkinson’s without the Parkinson’s consuming them. “This experience,” Adam insisted, “has made us stronger.”
The seven years since Lori’s diagnosis have not been easy. “It’s been a lot,” Adam said. But with what Adam describes as his mom’s characteristic “kindness, bravery, and strength,” Lori has not only emerged from the wilderness with more personal power and clarity, but she has used her journey to turn outward and support others living, loving, or caring for someone with Parkinson’s.
“After the fog of the first year,” Adam said, “my mom was able to be more proactive instead of reactive. That transition was a strong-willed decision. She could have chosen to remain stuck in a rabbit hole. Instead, she’s been able to really focus on what she can do from a physical perspective and how she can be involved in the Parkinson’s community. This, too, is a testament to her strength: she is doing her best to affect people positively instead of wallowing in self-pity.” In June, Adam and Lori are participating in PMD Alliance’s Advanced Therapeutics in Movement and Related Disorders (ATMRD) conference for medical providers. “We’re going to be on a panel talking about family support,” Adam said. Because for Lori and her family, improving the lives of those living with Parkinson’s means speaking up and bringing their experiences not only to other families navigating the disease, but to movement disorder specialists, neurologists, advanced practice providers (APPs) and other care providers who can only give the best care when they’re fully tuned into the patient experience.
Today, family—not Parkinson’s—is at the center of their lives. Adam has a one-year old daughter and he’s loved watching his mom become a grandma. “It’s kind of funny,” he said. “I have a little girl; she had three boys. It’s fun to watch her with a granddaughter, to see the way she dotes on her.”
Adam has also grown from watching his parents navigate this diagnosis in their relationship. “One of the best things I’ve ever seen between my parents,” Adam said, “is after her diagnosis. One of her physicians was doing research into dancing and music for Parkinson’s and the research showed a lot of benefits. So, for three years, my mom and dad took private dance lessons.” This came as a surprise to Adam and his brothers: “You should have seen our faces when my dad told the three of us he was taking dance lessons. Never in a million years would we have expected it! But that’s what he’s done as a partner: put his money where his mouth is. He’s stepped out of his comfort zone; dancing is a microcosm for how he’s been able to help and support my mom.”
Adam and his family never asked for Parkinson’s—and, if they could, they’d probably send it packing. But as Lori said, “Parkinson’s has not only made me stronger; it has made the rest of my family stronger, too.” They know what it’s like to lean on each other, to be honest and open about the invisible struggles. And they know what it’s like to find love and joy even in the darkest moments. As the writer Alice Walker has said, “Hard times require furious dancing.”
