Living With It, Laughing Through It: Luis and Ann's Story

There's a moment in Luis's story that stops you cold: a hurricane, a stadium holding 128,000 people with almost nothing to give them, and a man who didn't yet know that the tremor in his hand was the first sign of a disease that would define the next chapter of his life. What follows isn't just a diagnosis story — it's a portrait of a marriage, a found family, and the particular kind of humor it takes to live with a disease that doesn't let up.

We sat down with Luis and his wife, Ann, to talk about what it's really like to live with Parkinson's—not the textbook version, but the version that shows up in bruises with no explanation, and in a community that became family faster than either of them expected.

"That Was the First Time"

Luis traces the beginning back to 2005, though at the time, nobody—including him—thought much of it.

"I was working in the Bronx and I made a delivery of clothing for a women's program," he says. "I exerted myself, and that was the first time I ever noticed a tremor in my hand." The woman running the program sat him down, brought him cold water, and chalked it up to summer heat. He attributed it to exhaustion — he was working 12- to 14-hour days and traveling constantly for World Vision, where he was part of the emergency response team.

That instinct to explain it away only deepened a few months later, when Hurricane Katrina hit. Luis was supposed to fly in for a quick assessment. Instead, he landed to find the Superdome already holding 128,000 people, with almost no resources on the ground and only a small, five-thousand-square-foot space to work with.

"My national director and I looked at it and forgot about leaving," he says. "We're basing our services here." Over the next four weeks, that space grew into a 200,000-square-foot operation. Luis converted a conference room into a call center by hand—doing the carpentry himself—while juggling the chaos that follows every disaster: donated ice trucks abandoned on the highway because no one coordinated the drop-off, water shipments he negotiated truck by truck just to keep the doors open. He was working 18-hour days and not sleeping.

"During this time, did you notice your symptoms getting worse?" we asked. His shoulder ached constantly. He tore cartilage in his knee and avoided surgery, opting for physical therapy instead. He was, by his own account, pushing himself far past what his body could sustain—without yet understanding why his body was starting to fight back.

He wouldn't be diagnosed for another seven years. Looking back now, he wonders if the signs went back even further than 2005. He remembers his knee shaking during tense moments as a teenager and assuming it was adrenaline. In hindsight, it was always his right hand, always his right side—a detail that, years later, would matter more than anyone realized at the time.

What People Don't See

We asked Luis what he thinks is hardest for people to understand about Parkinson's, and he didn’t hesitate: it's invisible until it isn't.

"If we don't shake like a maraca, they don't realize we're sick," he says. "From the outside, we look okay. But they don't know—I get cramps along my ribs, cramps in my arms. And I get black and blues."

Bruises that appear with no memory of how they got there turned out to be a shared experience in the room. "Most people are able to avoid the bump," Luis says. "We can't avoid the bump." A basket of laundry, a doorframe, a moment of lost balance—and there's a bruise the next day with no story behind it.

The harder part, he says, is the disbelief that follows. "Even when you tell them, they still look at you like—but you look fine." It's a phrase that clearly grates. "That's the worst part," he says. "When they say, 'But you look good.' And I'm like—just keep walking. Shut up. Don't talk to me. How else am I supposed to look?"

Ann: "I Didn't Know What We Were Going to Do"

We turned to Ann to ask what the early days after Luis's diagnosis looked like from her side.

"It was so hard," she says. "For a year after he got diagnosed, I would cry on the train home every day, because I just didn't know what we were going to do." Luis was still trying to work, and Ann didn't want to be the one to tell him he couldn't—work mattered too much to him. Early on, he was sick enough that his routine narrowed to just work, home, and sleep.

Underneath the emotional weight was a logistical nightmare. Figuring out disability benefits was, in Ann's words, "a pain in the ass"—and once Luis qualified, they discovered he wouldn't have healthcare coverage for two years. Finally, the family would qualify for Medicaid instead. From there, it was Bellevue Hospital's clinic system: long waits, red tape, hours spent sitting next to strangers just to be seen. But she's quick to note the silver lining—being in the city meant access to excellent doctors, once you could actually get in the door.

"We did as much research as we could," she says. "We tried to join groups, but it was hard." One early connection came through a friend: free dance classes for people with Parkinson's, held at Juilliard, taught in part by an instructor Ann happened to already know. They also took part in the Parkinson's Walk and, years later, turned their 50th birthday into a fundraiser for the cause.

Not every support opportunity was one Luis wanted to walk into. Ann recalls a group session where the range of participants—from mild tremors to advanced mobility loss, including one person wheeled in on a hospital bed—hit Luis harder than he expected.

"I almost had to take a deep breath and compose myself," Luis says. "Because all of a sudden, I saw myself." It's the thing that scares him most, he admits—not where he is now, but the clear, undeniable picture of where the disease can go.

Finding Family in a Support Group

Ask either of them where they've found real community, and the answer comes without hesitation.

"We're so blessed to have TRAC and The Oxx Foundation," Ann says. "We say it every day."

She describes the pull of their current support group in almost gravitational terms: dreading getting up and dressed on group mornings, and not wanting to leave once they're there. Much of that comes down to the people—including a fellow group member, Tim, who Ann and Luis both describe with real tenderness.

That kind of community, they say, is something they didn't have in the years before they found this group—and its  wasn't for lack of trying. 

"We had found some resources" Ann says, "but we didn't form friendships like this." She recalls a reluctant first visit to an art therapy class—Luis  grumbling the whole way in—and by the end of the night, he was hugging the instructor goodbye.

"It's truly been a lifeline for us," Ann says.

Humor as Survival

If there's a throughline in this conversation, it's that laughter isn't a coping mechanism on top of the hard days—it is how the hard days get survived.

"Part of me being in front of people is so that I could smile, so that I could laugh," Luis says. "That's a coping mechanism. It's how we deal with things." He acknowledges that not everyone understands it—that in some families, that kind of humor might read as rude or insensitive. "But if we don't laugh," he says, "what's the alternative? Just sit there and cry all the time?"

How Their Circle Responded

Not everyone in Luis's life responded to the diagnosis the way he needed them to—a topic that we can tell isn't easy for him to revisit. But he speaks warmly about his cousin, who he says took the news the hardest.

Luis had always been the protector between the two of them growing up—stepping in when his cousin was bullied, coming home with a black eye and a fat lip after standing up for him against a group of kids. "That's what got him," Luis says of his cousin's reaction to the diagnosis—seeing, for the first time, the person who'd always defended him facing something he couldn't fight off with his fists.

Luis is candid, too, about how the disease affected him before he understood what was happening. "I didn't realize that Parkinson's was eroding my humanity," he says, describing a period early in his diagnosis marked by confrontations and a short fuse he didn't yet have a name for. Ann agrees it changed how he showed up in conflict—with her, and with their sons—in ways neither of them recognized as the disease at the time, rather than simply his temper.

The Anxiety Between Doses

One of the more visceral parts of the conversation is about the space between medication doses—what happens when an "off" period starts, sometimes earlier than expected.

"It's so palpable," Luis says. "I think the anxiety isn't even Parkinson's—it's our own emotion, knowing that the medicine is wearing off. This is scary." He says the environment changes everything: at home, an off period is manageable, even something he can ride out with a sense of humor. In public, it's a different story—moments where he's struggled to speak clearly or think straight, and the only fix is finding a private moment to take his next dose.

Grief, on a Loop

Ann doesn't dress up how hard this still is, even years in. "We're still grieving every day," she says. "For the things you wanted in your life that were supposed to happen, that aren't happening. Things you can't do day to day that you want to do. Because it's just not fair," she says. 

And yet, the conversation doesn't end there. "Unfortunately, there's nothing we can do about that," Ann says. "But fortunately, we found support. That's the bright side." She talks about believing people come into your life for a reason and a season—and that their support group, against every expectation she had when she first got involved in advocacy work, became something closer to family than she ever imagined.

"I can't get over how quickly we all became a family," she says. "I'm so grateful."

Small Wins

The conversation closes on something lighter: a recent discovery that Luis can walk more easily in a swimming pool than on land, after years of struggling to cross even a short stretch of sand without losing his balance.

"How many laps did you do?" Ann asks him. "Like twenty small laps?" Luis replied. "You have to come with me," she tells him. "You have to get motivated." "Okay," Luis says. "I will."

It's a small exchange—but after everything that came before it, it lands as exactly what it is: two people, still figuring this out together, one lap at a time.