Scrolling through Esther Labib-Kiyarish’s TikTok profile, where she’s been posting about her young onset Parkinson’s disease (YOPD) journey for the past two years, you see comments like: “Same here,” “I feel you,” “I so appreciate your posts. The best.” In the comments of a pinned post about common signs you may have YOPD, one mom writes, “I’m having an MRI next week. My neurologist thinks I may have Parkinson’s or MS. I’m scared as heck.” In the comments of another post, a caregiver writes, “I just want to thank you for helping me to understand more about Parkinson’s. I work with a lady (77) and your info helps me help her.”
Esther hadn’t set out to become a TikTok content creator and pivotal YOPD advocate with over 7,000 TikTok followers. She joined the app as a safeguard, keeping an eye on her daughter’s posts. But as she experienced a two year diagnosis journey during a global pandemic, TikTok became a lifeline and resource. One day after her diagnosis in 2023, she was laying in bed, ruminating on all of it, and she thought, “Girl, this crazy! I’m ready to talk about it.” And, so, her first TikTok reel was born.
“When I got diagnosed, before I even called my husband, from the clinic, I direct messaged two people in the community.”
“TikTok has become a political thing,” Esther said to me in a recent phone interview. “People have a lot of opinions about it. I feel like it gets disregarded; it’s this lesser platform. It’s this lesser form of advocacy, not where serious discussions are going on.” Esther disagrees. “I take a lot of offense to that,” she said. “We have a disease called young onset Parkinson’s. We should be where the young people are.”
When Esther first joined the platform, it was the middle of a global pandemic and many of us were home watching Tiger King on Netflix. “I remember watching that show,” Esther said, “and my friends and I would send each other Tiger King TikTok. It was a lot of funny videos. That’s how it started for me. But it became our search engine for everything—recipes, music, shows we’re watching, parenting advice. That was the evolution of the mom culture.”
So when Esther started noticing unusual shaking in her body, the first thing she did, instead of Googling it, was search for it on TikTok. The problem at the time was that the first videos that came up were of hunched over 80-year olds (Esther was in her mid-40s) with what she called “dramatic music overlay.” She was terrified. But as she refined her search (#tremor), she started stumbling upon TikTok’s Parkinson’s community. “By the time I had a neurologist,” she said, “I went down the TikTok rabbit hole and found real people living with YOPD.” She decided to reach out to some of them with questions and, sure enough, they answered. These once-anonymous content creators became Esther’s support system. “When I got diagnosed,” she said, “before I even called my husband, from the clinic I direct messaged two people in the community.”
For decades, Parkinson’s was mistakenly considered an “old man’s disease.” Today, as we slowly emerge from that misconception and begin to correct it, we’re still dealing with its aftermath. Which means that when you’re diagnosed with Parkinson’s—especially young onset Parkinson’s, it can feel lonely and isolating. When Esther was diagnosed at age 47, she remembers “feeling like the only person in the world that’s going through that.” In fact, she often humorously refers to living with YOPD as “cosplaying as a normal person.” When your medication is working, she explained, “you can go out into the world and walk amongst everyone else, looking normal,” even when, inside, you’re “feeling very jacked up.” It gives the sensation of being alone in a crowded room. “Even when you’re amongst everybody that loves you,” she said, “the disease can make you feel very separate.”
“People act like we’re so rare,” Esther said, “but we constantly have people getting diagnosed in their 20s and they reach out to me. Every time I do a TikTok Live, I connect with someone under 30 who is newly diagnosed. Every time.” For Esther, this is why posting on TikTok isn’t some frivolous thing; it’s crucial. “These people deserve us to meet them where they’re at. Can you imagine how scary it is to get diagnosed in your 20s? Who are they going to connect with? They’re not in the Facebook groups. They’re here, on TikTok.”
Indeed, in the face of an unexpected and life-changing diagnosis, an online community can be a salve. And a resource. The first two people with YOPD who ever commented on one of Esther’s TikTok videos are close friends to this day. The first person who ever invited her to a support group was on TikTok. “For people like us with young onset where there’s not as many of us, it’s a lifeline,” Esther said. But, for her, the best thing about TikTok is when the connections that begin online spark real-life meetings.
Amber Hesford, who was diagnosed at age 35, is, in Esther’s words, “the biggest creator on TikTok for Parkinson’s.” And she happens to be hilarious, mixing humor and sarcasm to tell her journey of life with YOPD. When Esther first discovered Parkinson’s TikTok, Amber was her “rockstar.” One day, Esther was watching one of Amber’s TikToks where Amber was in the car while filming, and Esther thought, “Wait a minute…I recognize that road!” Esther had never spoken with Amber before, but she messaged her: “Girl, do you live in El Paso?” Turns out, they’re nearly neighbors.
Amber was the first person with YOPD that Esther met in person. “If you can use social media to be in the same room as somebody with Parkinson’s, it’s a completely different feeling and it’s amazing,” Esther said. “To this day, Amber’s my really good friend. And those serendipitous connections? They happen because of social media.”
Having support doesn’t mean the journey is easy. Esther continues to see the disease “take things” from her and her friends. “I know it sounds cliché, but it’s true: you don’t realize what you have until it’s gone,” she said. And, sometimes, it’s the little losses that hurt most.
Esther has always had a love affair with shoes. Her step mother began insisting she wear heels to church beginning when she was twelve, and Esther hadn’t stopped wearing them since. But about a decade ago, she stopped being able to wear pumps and she couldn’t figure out why. She kept stepping out of the shoe, but only on her right side. She figured she had a fallen arch and dismissed it. Then she started wearing sling back shoes until those wouldn’t stay on either. Then she only bought shoes with an ankle strap. By the time she was diagnosed with Parkinson’s, it all added up: she was diagnosed by her gait.
“I kept trying to hold onto heels,” Esther said, “thinking, now I’ll wear platform shoes instead of heels. It’s just part of who I am. I thought, flats aren’t going to look right with certain outfits.” In fact, Esther says there’s an ongoing discussion in the PD community about what do you fight for and what do you let go of? “There’s this fighter narrative in the community,” she said. “I’m not going to let PD win; I’m not going to let it take anything. But, at the same time, you really are losing things. What you choose to fight for changes as the disease changes.” Esther is getting ready to go to a four-day music festival with her daughter. She’s been planning her outfits, knowing she’ll be on her feet all day. “I’d rather wear heels or boots”—her Instagram handle is @shakinginmyboots1—“but I have to let that go. Instead, I can still hold onto the fact that I get to do something like this with my daughter because I love music.”
Today, Esther continues to share her YOPD journey not only on TikTok, but as a co-host of PMD Alliance & Young Onset Parkinson Network’s “Living Well Starts Here” podcast. “It’s like everything else with us,” she said. “Our mission is to try and share our experiences as authentically as possible.” She, alongside co-hosts Melissa Marie Livingston and Chris Sutphin, whom she first met on TikTok, try to take the conversations they’ve been having together since they connected and bring them to listeners. Esther’s goal in the podcast, just as it was when she first launched her TikTok videos, remains the same: “for people to not feel alone. I just want to be there to say, ‘It’s not just you. We all feel that way. And it’s okay to feel it.’”
Two years into her diagnosis, Esther thinks about what it means to share her daily life with YOPD. “I know there are people who have worse symptoms than me,” she said. “I know people who have faster progression. People who have lived with this disease many, many, many more years than I have. People who have lost people with this disease. I think more and more about how we can be of service to those people who have lost someone with Parkinson’s. What would it feel like for them to see me on TikTok bouncing around on my treadmill, quote on quote ‘living my best life’ with Parkinson’s?”
“I understand that people want and need to be positive. I have to, as well. But I think we’re doing the community a disservice to only show that piece of it.”
While Esther says she gets almost universal support in her social media comments, she insists she “doesn’t ever want to lose sight of the reality of what this disease looks and feels like for the majority of people with it.” While Esther has a supportive husband, two kids, and a rescue dog named Yogi who, she thinks, really rescued her, she knows there are a lot of people living alone with this disease. “I don’t think we can minimize the brutality of this disease and what it does take from people over time,” she said. “I understand that people want and need to be positive. I have to, as well. But I think we’re doing the community a disservice to only show that piece of it.”
And it’s not just Parkinson’s. “There are other movement disorders that are more rare and that need resources,” she said. “All of us, we need more support. We need more education. We need more understanding. We need more visibility. That is what I think people really, really, really need to understand. That’s why I do this everyday. If someone can look at me and see me out and about shaking and having trouble walking—that people at least have an idea that someone who looks like me can have Parkinson’s—it matters.”
Esther believes that no one should be left feeling invisible with this disease. No one should feel alone. “Parkinson’s is not going to look the same for everyone,” she said, “but we must always make sure that everyone—and I mean everyone—is included.”
