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Jessica Krauser’s mission is to make the world brighter for Parkinson's patients.
Four months after Jessica Krauser was diagnosed with young-onset Parkinson’s disease in 2019, she told her nine-year-old twins, who were eating breakfast in their kitchen. The kids knew something was up—that she’d often shake before reading at church, and that her leg was sore—but they didn’t have the words for what was happening.
Krauser didn’t want the news to seem dire, because it wasn’t. So she started with, “Hey guys, guess what? The doctor found out why I was shaking. It’s this thing called Parkinson’s. I’ll have it for the rest of my life, but I’ll take medicine so I don’t shake as much. I’m okay. I’m not dying [from Parkinson’s.]”
Their response was just as nonchalant as Krauser’s delivery, and after a few questions, her son said, “Cool,” and asked her to pass the syrup.
"Hey guys, guess what? The doctor found out why I was shaking. It’s this thing called Parkinson’s."
“The education was there, but it’s not relevant to life. I wanted bright, I wanted relevant."
A Parkinson’s diagnosis often comes with pamphlets and a barrage of important information that takes time to settle in. They include a list of symptoms, scientific terms like “substantia nigra,” and images of the chemical makeup of dopamine. But those fact sheets didn’t provide answers to Krauser’s initial questions upon learning about her diagnosis.
They didn’t explain a new pain in her elbow. They didn’t let her know if it was really okay to have a glass of wine with her new medications. And they didn’t tell her how to tell her kids. For all of those things, Krauser was on her own.
“The education was there,” Krauser remembers, “but it’s not relevant to life. I wanted bright, I wanted relevant. Not a bunch of facts on a blue and white piece of paper.” She longed to hear first-hand experiences from others navigating the disease.
“When I was diagnosed, I remember writing to myself that there’s a reason [for the diagnosis]. It’s not like God gives you [the disease]. But he will help you through it,” she says. “I want to lessen the fear of Parkinson’s. And I want to change the way we navigate the disease.”
And so she has.
The hand-written letter from Krauser is affixed to the top of the First Step Set, the kit that Krauser developed with input from the Parkinson’s community at her gym, for individuals newly diagnosed with Parkinson’s disease.
With twenty years of experience in marketing with an emphasis on healthcare, Krauser was uniquely situated to identify and address the issues she experienced as a new patient, and her strengths as an open and honest communicator led to a natural transition for Krauser to become an advocate and activist. While living with the disease, she’s also helped to educate others through her podcast, developed a nonprofit to fund Parkinson’s research at the Michael J. Fox Foundation, and launched the First Step Set.
While other kits exist for Parkinson’s disease, this is the first one developed by existing patients from ages 35 to 85 who have a first-hand understanding of the challenges in living with the disease. The kit stands out because it contains items that can be of immediate use, says Krauser.
Free to Parkinson’s patients, more than 400 First Step Set boxes have been distributed.
There’s an automatic level of trust knowing that it comes from others who have experienced Parkinson’s first-hand. Krauser likens it to pregnancy. “Before I had kids, I worked on the Similac brand,” she says, “And I felt like I knew so much about what a new mother needs. But when I got pregnant, I realized that [pregnancy] was so different from what I’d originally thought. People trust others who’ve been there, themselves.”
Free to Parkinson’s patients, more than 400 First Step Set boxes have been distributed through Parkinson’s-themed events hosted by nonprofit medical centers and facilities like Cleveland Clinic and Ohio Health, and through requests on Krauser’s advocacy website, 5K for JK. Krauser is working to raise awareness for the kit through her podcast, The Secret Life of Parkinson’s, sending samples to Parkinson’s gyms, and hopes to soon build awareness through paid advertising connected to Google searches related to Parkinson’s diagnosis.
The boxes—which are lauded by neurologists and psychologists alike—include elements that enhance their users’ lives both mentally and physically, each peppered with post-it notes with messages from current Parkinson’s patients. We take a look at a few of the items—and speak with experts on why they matter—below.
Scroll to learn more about each hand-picked item included in the First Step Set.
Tucked inside the box is a brightly colored booklet emblazoned with the words, “You are not alone,” and a QR code leading to hand-pulled Parkinson’s gyms and exercising programs in her state.
Community is key for living with chronic illness, says Linda S. Karlovac, PhD, psychologist in private practice. “The polyvagal nerve in our autonomic nervous system says that we are built to be in connection with people,” she says, “Oftentimes, a diagnosis is going to interrupt connections, and therefore it is important to have community,” Karlovac says. Connecting with people in a Parkinson’s-centered exercise program not only is a connection with people who are choosing to take a positive step in their lives, she explains.
When Krauser found Shaky Hands, A Kids Guide to Parkinson’s Disease, by Dr. Soania Mathur, a family physician with young-onset Parkinson's disease, she absolutely loved it. The book replaces clinical jargon with everyday easy-to-understand language. Although Mathur wrote the book for children, it is helpful for adults, as well, which is why Krauser included it in the box.
“Jessica’s kit is really wonderful,” says Mathur, who wrote the book to discuss elements of Parkinson’s to her kids in a way they would understand. “‘You have Parkinson’s’ is a life-altering phrase,” she continues, “You learn much more from your peers on how to live well with this disease, compared to your medical team. When you’re first diagnosed, you have nowhere to go, nowhere to turn. Jessica’s kit is really important.”
Krauser’s routines improved immensely when she started using an electric toothbrush, which is included in the box. And Dr. Patel says this makes sense. Dopamine smooths out our daily movements in the same way that oil enhances a machine, he explains. “Without dopamine,” he says, “things become more difficult and rigid. We get slower. And little things like brushing your teeth can be a challenge, and having something like an electric toothbrush can help aid in cases when patients struggle with dexterity.”
The steel water bottle in the kit includes a personal note from Krauser, herself: “I wish I knew to take my meds at the same time every day with a full glass of water.” The note speaks to two elements that are important for Parkinson’s patients.
Krauser learned later that it’s not enough just to take medications “at lunch” or “at dinner.” Consistent timing is important because dopamine levels fluctuate throughout the day. “If you don’t take your medications at the same time every day, your brain doesn’t know when it's going to get dopamine,” says Dr. Patel. “That can lead to side effects and intolerability to medications.”
Krauser is a journal person. She always has been. This came in handy when she was training for a half marathon and first started noticing symptoms that she would later learn were part of her Parkinson’s Disease. And so it was important to her that a journal be included in the box.
Parkinson’s is not a cookie-cutter disease. No two patients will have the same constellation of symptoms, and not all patients will react to medications the same way, says Dr. Patel. So record keeping is extremely helpful for a neurologist or movement specialist working with a Parkinson’s patient. It could help define the difference between a medicine peaking too high, or a not lasting long enough, allowing adjustments to be made accordingly.
Scroll to learn more about each hand-picked item included in the First Step Set.
Karlovac believes that these boxes will have a dual positive impact on the people who receive them. Not only do they receive information that will empower them, but they’ll also come to terms with the reality of what they have to face. “And that’s not a bad thing,” she says.
Seeing the names of others—Gene, Rick, Roz, Brian—who live with Parkinson’s provides inspiration and a comparison point by which to make positive change. “I cannot change my diagnosis, I can’t change my symptoms, but I can change the way I live with them. I can make a choice about that. And I think that choice is important.”
Jessica and her friends were welcoming to us as we photographed them assembling the First Step Sets. I had the chance to understand how organizations and individuals like her make a difference in helping patients feel less alone. The team of friends worked together to build boxes with careful craftsmanship. It was comforting to know that so many newly diagnosed people would soon become part of their 'family.'
The 5K for JK is a nonprofit group empowering others with Parkinson’s by providing education resources and exercise opportunities. Your donation will help create more First Step Sets and fund the annual 5K for JK, among other things. Their 2024 goal is to raise $200k.
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The Michael J. Fox Foundation (MJFF) is committed to supporting research and advocacy groups to improve therapies used in Parkinson’s treatment. Contribute to their mission by donating.
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