It took so long for Amber Hesford to get a Parkinson’s diagnosis that by the time it was official in 2018, she had long suspected exactly what it was. Getting the official diagnosis, she said, laughing, “just confirmed that I’m always right.” She was 35.
When I asked her about the delay—was it because she was young or a woman, someone who didn’t fit the stereotypical image of Parkinson’s—she said, “I think all of the above.” In fact, when Amber first sought out a neurologist, the doctor said, “You’re fine,” and dismissed her symptoms as anxiety. By the time Amber crossed state lines (from Texas to Arizona) to get another opinion at the Mayo Clinic, her neurologist was refusing to take her calls. When she finally shared with him the Mayo Clinic’s diagnosis and asked him to arrange a follow-up scan back home in Texas, he insisted he couldn’t arrange it over the phone, telling her, “I don’t know why you think you’re some kind of princess that I need to answer your scan request on the phone.” Newly reeling from her diagnosis, Amber says she “lost it” and started crying in the face of his abrasiveness. “I don’t know why you’re crying,” the neurologist told her. “It’s Parkinson’s; you’re not going to die.”
The neurologist’s callousness only spurred Amber on: once she regained her footing, she declared her mission: to educate people about the disease, especially young-onset Parkinson’s disease (YOPD), and to remind them: amidst the hardship and uncertainty of their diagnosis, it’s still okay to find humor and joy. “There’s still life to live,” she said. “Sometimes, you have to work that much harder to find joy, but when you do, it has a big impact.”
At the time Amber was diagnosed, she was newly divorced and navigating parenting on her own. “The one silver lining of that last conversation with my neurologist was that at least I knew I wasn’t going to die,” she said, laughing. But that doesn’t mean it’s been easy. “Parkinson’s has made it difficult to be the parent my kids deserve,” she said. “There’s a lot of guilt involved, but I do everything I can.”
From the beginning, Amber chose to be very honest with her kids, who were seven and nine, about her disease. “When I found out, I had a talk with them,” she said. Three years later, during the peak of the Covid-19 crisis when Amber got deep brain stimulation (DBS) surgery, her children were the ones who shaved her head before the procedure; “I really tried to give them some ownership over a pretty uncontrollable situation.”
While DBS surgery has made a difference for her—she recently posted a video of herself with the device turned off to show the stark difference—she still fears for the future. “You always worry as a parent,” she explained. “Parkinson’s amplifies it by a million.” She wonders, “Am I going to be able to help with my grandkids someday?” Her hope is to be as present for her kids as possible without being a burden on them. “I want to make sure that I’m there for graduations and performances. Right now, even though I’m overstimulated by crowds, that’s the thing I’m making sure I’m not missing: band concerts and mariachi performances.”
Today, five years into her journey, she says her kids are at an age where they’re “pretty self-sufficient,” but they still need her to shuttle them after school from football practice and friends’ houses. The endurance it takes to parent has been challenging; “I just have fatigue or apathy that really impacts me,” Amber said.
Personally, Amber is not bothered by what other people think of her when they see her tremor at her kids’ band concerts or in the grocery store, but she considers her kids’ feelings as they enter their teen years. “I think, ‘God, I hope the kids are okay with this. I hope I don’t embarrass them.” Gratefully, they seem unfazed by their mom’s shakiness in public: “They still invite friends around,” she said. “Besides normal teenage embarrassment, they don’t seem to try to hide me.”
In fact, alongside the hardships of her disease, she can see some brightness. She feels like Parkinson’s has helped her appreciate each moment without sweating the small stuff. While she doesn’t wish this disease on anyone, including the impact it has had on her family, she hopes her children watch her doing the best she can and “learn empathy and how to persevere with humility.”
Amber was newly divorced when she was diagnosed with Parkinson’s disease (PD). When I asked her what it’s like to be a young, single woman with PD, she said the disease has made her dating life “sparse.”
But she’s realized she’s not sure she wants a partner in this season of her life. “Honestly,” she said, “I don’t know if it’s me as a person or it’s the apathy, but right now, dating is the furthest thing from my mind.” Part of it is that she’s simply not interested in dating right now, but there seems to be a small part, maybe a much quieter part, that doesn’t want to be a burden. “I wouldn’t want to put this responsibility on anybody,” she said.
In fact, the other night when she was tossing and turning, struggling with insomnia, and found herself trying to find a comfortable position in the bed—“sideways, upside down, downside up,” she said laughing—she suddenly felt a wave of relief: “I’m by myself,” she said. There was no one else in the bed to disturb.
Even if dating is not on the table, Amber prizes connection with the Parkinson’s community, especially those who understand what it’s like to be young and have this disease. When she was newly diagnosed, her doctor suggested she try attending support groups but, locally in El Paso, TX, where she lives, she quickly realized that she was going to be the youngest one in those rooms. Taking her Parkinson’s journey and her advocacy online has been a game-changer. There, she has connected with people who are in a similar life stage—raising kids, working, maybe even dating. Eventually, through Tik Tok, she met another woman and mother with YOPD who lives nearby. “It feels good to have someone to vent to when your meds aren’t working and your kids are driving you insane,” Amber said. “Someone who truly knows what you’re going through.”
Amber also uses her online presence—including her Instagram account @not_the_fake_amber—to educate and advocate. “Parkinson’s is the fastest growing neurological disease in the world,” she said. “People are going to be impacted by it in their lifetime in some way, even if they’re not yet.” In fact, one of the most frequent comments she gets on her account is surprise: new followers have no idea that “you can be this young and have Parkinson’s.”
Part of her awareness-raising, which includes a mix of her classic dark humor, is to ensure that others not living with the disease know how to react to it. “I’ve had people make horrible comments to me online,” she said. “I have thick skin. But if I can educate one person and that saves another person from receiving a horrible comment, then I’m doing what I’m here to do.”
In fact, Amber has gotten pushback on some of her humorous videos. People tell her things like, “How could you make light of this disease? My uncle had it and I watched him die a slow, miserable death.” But, for Amber, there is no approaching life with this disease without embracing humor; there is nothing more human than being able to invite in both light and dark. (For example, when Amber talks about her DBS surgery, other women considering DBS for themselves will sometimes ask her: “Can you still be intimate after the procedure?” Amber, in her typical humorous fashion, often replies, “Yeah, girl. He doesn’t care if you have wires sticking out of you. You might not have hair for him to pull, but it’ll be no different than it was before.”)
Indeed, it is her darkly funny videos that attract the most followers. “They might find me because of a funny video,” she said, “but then they stay, and that means they’ll be there when I’m doing an educational video, too.”
Amber admits that “there are days when I’m not okay, definitely.” But being able to see humor in darkness makes the hard days easier. “When I’m laughing, when I’m joking, I can forget about my disease for five minutes.” If there’s one thing she wants to remind others, it’s that: Don’t give up your laughter.
As the beloved poet Mary Oliver said, “If you suddenly and unexpectedly feel joy, don’t hesitate. Give in to it…Joy is not made to be a crumb.”
