Danielle Thordarson, MD, a movement disorders specialist, wasn’t one of those little kids who always knew she wanted to be a doctor. She grew up in California on an avocado farm, and her grandparents—avocado farmers—lived next door. First, her grandfather developed Parkinson’s disease (PD). Then, years later, her grandmother. She was so young when her grandfather was diagnosed that the only way Danielle ever knew him was “shaking, shuffling, mumbling, and drooling.”
By the time she got to college, she knew she was interested in science. But it was reading studies done on her campus at UCLA that solidified her direction: the research there showed a link between pesticide exposure and Parkinson’s. Soon, she had a hunch: the pesticides her grandparents were exposed to on their farm probably contributed to their PD.
Today, Dr. Thordarson is on a mission to expand access to meaningful Parkinson’s care and therapeutics for Hispanic communities and people, like her grandparents, who are living far from city centers where most movement disorder specialists practice.
Dr. Thordarson remembers how much time and energy her grandparents put into getting to the doctors they needed. “With their mobility issues and the traffic it took for them to get to downtown Los Angeles—they were an hour outside LA—it was so hard for them to see their movement disorder specialists at USC [University of Southern California],” she explained. When she sees patients today, she thinks about her grandparents and imagines: What would be possible if they could see a specialist in their community?
In the United States, as many as 1.2 million people live with Parkinson’s. And the numbers are exploding: about 90,000 people in the U.S. are diagnosed annually, a 50% increase from a decade ago. Of all those people, only 9% of those with a Parkinson’s diagnosis receive care from a movement disorder specialist. Truthfully speaking, there aren’t enough movement disorder specialists, leaving many people under-supported. Dr. Thordarson is committed to doing something about this.
“What we need,” she said, “is knowledge and education about what’s out there. A lot of patients are treated by their primary care physician for Parkinson’s disease…And a lot of these people think the disease as they’re living with it is as good as it’s going to get. They tell me, ‘I have a neurodegenerative disease and there’s nothing my doctor can do for me.’ That lights a fire in me. We have so many therapies we can offer…We have the ability to optimize people’s quality of life.”
In fact, she feels like the movement disorders field is on an exciting precipice: “We’re on the verge of finding actual disease-modifying treatments,” she said. “The whole field is exploding right now.” This fall, Dr. Thordarson took steps to bring these revolutionary therapeutics and her specialist knowledge to her community: she opened a clinic intended to serve people in rural California (Ventura, Kern, and Santa Barbara counties), including the Hispanic community.
This past summer, when Dr. Thordarson was finishing up her fellowship in movement disorders, she attended the Advanced Therapeutics in Movement & Related Disorders (ATMRD) Congress in Washington, D.C., a one-of-its-kind conference for movement disorder clinicians created in partnership by PMD Alliance and MedStar Georgetown University Hospital. This congress is designed to provide clinicians with practical knowledge of advanced therapeutics that they can take back with them to their clinics and apply right away. Because at the heart of this congress are the people living with movement disorders: When clinicians are equipped with the most advanced knowledge and tools, their patients win.
Dr. Thordarson, who said the congress was “fantastic,” “collegial,” and “inspiring,” was able to attend thanks to a scholarship offered for fellows like her—those who are training to become movement disorder specialists. The scholarship not only covered the conference registration and hotel, but offered a sizable stipend towards travel. “I’ve already recommended it to other fellows for next year,” she said.
But the best thing Dr. Thordarson came away with from ATMRD was an invitation to participate in CAMP-FiRE, or Career Advice and Mentorship Program for Fellows and interested Residents. CAMP-FiRE, a new PMD Alliance collaboration led by Jean Hubble, MD, pairs early career physicians in movement disorders with a mentor—matched to their individual career aspirations and interests—for a year-long program. With 6,000 diagnoses for every one movement disorder specialist in the U.S., one of the best ways we can ensure those most impacted have life-giving care is by equipping the next generation of movement disorder clinicians to meet the rising demands of the 21st century.
One of Dr. Thordarson’s long-term goals is increasing the diversity of clinical trial participants. “Most clinical trial participants with Parkinson’s are white males,” she explained. This skews the outcomes, leaving huge swaths of people out of the data. “We’re really trying our best to bring in patients from other ethnic and socioeconomic backgrounds. Which means bringing the research to them, rather than making them seek it out.”
Through CAMP-FiRE, Dr. Thordarson was paired with a local mentor, outside her institution, who can help her learn the best ways to expand her clinical trial participation and research. For the future of the movement disorders field, this expansive view of who deserves to be represented in clinical trials is a game-changer.
In her clinic, Dr. Thordarson is committed to truly listening to the needs of her patients. “For those who work in the communities I’m serving, there’s often a language barrier. These patients don’t get their questions answered as thoroughly, there’s not as much time spent with them.” Dr. Thordarson knows how crucial taking that time with her patients is. “I learn from my patients every day,” she said. “It’s one thing seeing a Parkinson’s patient for a few minutes and it’s completely different to have the disease firsthand. The best way to learn is to hear about their daily lives, to follow and listen to them over time over many years.”
In fact, Dr. Thordarson has seen how physicians can easily get lost in the details without zooming out and asking: What’s most important to the patient? “Asking that question can reframe an entire visit and make it centered around their needs. Over the last several years, I’ve started to pause and take a second: ‘How are you, actually? What is something you really want? What’s something that’s troubling you?’” Asking these questions, she insists, can shift how she and her patients approach their disease. “For example,” she said, “if someone’s having awful mobility and dexterity issues, I could get so focused on trying to level out their levodopa throughout the day. But when I ask them, ‘What do you most want to talk about in our time together?’, they might tell me, ‘Oh, it’s my hallucinations.’ That completely reframes things and maybe we even step back on the levodopa.”
These conversations—conversations focused on the real lives and desires of the people she treats—are what Dr. Thordarson would have wished for her grandparents. Today, she’s honoring them by bringing what they never had to a new generation of patients. And, by doing so, she’s helping people with Parkinson’s from all backgrounds make their lives a little more manageable.
