“Health care was always meant to be for people,” Megan Dooley, OTD, an occupational therapist and the owner of Innovative Therapy Solutions & Consulting LLC, told me. “It wasn’t meant to be about money first.” She went on: “Way back in the day, doctors used to go home to home on house calls.” Dr. Dooley believes something fundamental—and detrimental—has changed since then. Rather than the focus being on the patient’s needs and education, it has become “more about the doctors and what they need.”
With her mobile occupational therapy clinic, where she and her team drive long distances to meet their clients in their homes, she’s on a mission to rewrite health care’s priorities. “Our passion and compassion to serve is about putting the client in the center of the circle and surrounding them with care and help.” This, she insists, is about connecting everyone, no matter who you are, with resources and healing support. It’s about leaving no one behind.
Not Your Traditional Occupational Therapy
When Dr. Dooley opened her mobile practice in 2020, she was certain of one thing: this wasn’t going to be your traditional occupational therapy clinic.
Last month, Dr. Dooley, whose mobile clinic serves people impacted by challenges like Parkinson disease and dementia in North Dakota, met with two new clients. The husband was Native American. The wife, who was struggling with dementia, had Panamanian roots. With her dementia progressing, he was struggling to connect with her.
When Dr. Dooley stepped into their home for the wife’s first therapy visit, she said she was amazed to see the way their home is a “sanctuary” for them, honoring their religion and their culture. Together, they went through the house, noting the things that were important to them, like her music and his display of Native American symbols. And she used that to connect with them both, and to help them connect with each other. The wife, who was uncertain at first, is now open to Dr. Dooley returning and the husband feels safe, like Dr. Dooley understands not only his wife’s dementia, but their culture. “Now they both feel safe sharing with me,” Dr. Dooley said.
This is crucial. Getting to connect with clients in their homes allows Dr. Dooley and her team to see their true environment and to personalize each person’s care. “I don’t think you get that connection in a clinic,” she said. “It’s not as intimate.” When you’re welcomed into someone’s home, you can begin to really understand them. “It’s amazing what you learn about someone in their home.”
“We just don’t say no.”
When Dr. Dooley opened her practice, it was community partners who suggested she work more closely with people with Parkinson’s and dementia. She was used to working in hospitals and other large medical care settings, but she said the first time she went into someone’s home to provide intimate, personal care and they told her it changed their life, she was hooked. “It was like a drug,” she said. She started realizing that her practice had the power to reach people who are isolated and falling through the cracks. “They’re so appreciative,” she explains. And they’re committed to their care. “They do what you tell them,” she said. They listen. They heed the support she provides. Just as she shows up in their homes, they show up for themselves in their care. “It feeds my soul,” she said.
In fact, Dr. Dooley and her team have an unwritten rule: “We have made it our mission not to say no to anyone.” Even when clients from 100-150 miles away are referred to her practice, they show up. “We can,” she insists. “Because we’re mobile, we don’t have overhead. We pay for gas. Yes, it’s time-consuming. Yesterday, I drove to someone’s home who is extremely secluded. He’s been struggling to connect to therapy.” She wasn’t going to leave him without support. “From there, I drove another hour to meet a couple whose home is their biggest barrier. We just don’t say no; we find a way.”
Sometimes, this means driving to a client for their first visit and following up with telemedicine. It’s not traditional, but for those who don’t have reliable access to high-quality care, it matters.
Some with Parkinson’s are Falling Through the Cracks
“Education,” Dr. Dooley said when I asked her about the biggest barrier to care she’s seen in the Parkinson’s community. “But not just for those living with the disease,” she said. “For the healthcare providers, too.”
When people in her local rural communities are diagnosed with Parkinson’s, she says “they get their medication and they leave. They aren’t told there are resources. They aren’t directed to support groups. They don’t even know they exist.” She went on, giving another example: “Other people may get discharged from a hospital and believe they can’t qualify for any more therapy at home. Or they don’t know they can get help from the state.” They need and deserve to be educated on their options. Educated patients are empowered patients.
In many ways, Dr. Dooley believes this stems from medical providers lacking the necessary education around Parkinson’s and community resources. “I’ve gone down to the reservations and provided services for people in tribal communities,” Dr. Dooley said. “Some of the people there don’t even know they have Parkinson’s. They just assume they’re getting the shakes because they’re getting old or maybe because they drank a little too much in their life.”
On the reservations and in rural communities throughout North Dakota, Dr. Dooley says the primary care providers are “not educated on what Parkinson’s looks like…It’s not that the providers don’t know anything; there’s just a gap in their knowledge [when it comes to Parkinson’s]. As medical providers, they’re just trying to survive. They’re probably feeling alienated and isolated emotionally and physically from the rest of the medical community [in larger, urban, medical settings]. They don’t know where to refer to next.”
This means people living with Parkinson’s aren’t getting the proper diagnosis. As Dr. Dooley explained, “That’s hindering their future education, support, and care. No one knows there’s more out there for them. Or that certain medications may help.”
Closing Gaps in Care: “Don’t ever get discouraged.”
North Dakota has one of the highest per capita cases of Parkinson’s in the nation. Up against overwhelming, systemic inequities like lack of education or too few movement disorder specialists, it’s easy for providers like Dr. Dooley to feel they can’t make a meaningful impact. But she insists that’s not true: “Don’t ever get discouraged when you can’t do it all,” she said, “I remind my staff all the time: so many of the people you care for would have never gotten noticed if not for you. You’re making a difference.”
In fact, Dr. Dooley continues to expand care by offering an eight-week program called, “Express Yourself.” It’s a dual-track support group for care partners and individuals living with Parkinson’s. “We tend to have lots of physical support for Parkinson disease, but not psycho-social-emotional support,” she said. This not only impacts people living with the disease, but their care partners, too, who struggle with burnout and a sense of losing their identity. This program is designed to offer that support: community, education, and usable tools for navigating the disease.
Last year, the support group paid for her to go to PMD Alliance’s ALL IN! Summit for support group leaders—covering her flight and hotel. “They said, ‘Go. And bring back some information.’ Turns out, it was fantastic.”
ALL IN! equipped Dr. Dooley with tools and community connections to improve her own support groups and, therefore, improve the lives of people living with Parkinson’s in her area. “It also shed light on us,” and the need many of her local communities are experiencing around this disease. “It showed me things I didn’t know were possible before.”
That is the beauty of community: just when you think you’ve reached the end of your rope, they’re there to lift you up. To remind you: there’s another way. And that you don’t have to do it alone.
Dr. Dooley and her team will continue on, home by home, wrapping each family in the comforting, empowering embrace of community.
Help the helpers
With too few providers trained in movement disorder management, PMD Alliance provides free continuing medical education and an annual conference for healthcare providers to expand informed care. We also host weekly, live webinars with experts of all kinds to connect people with the information they need right now.
A donation of just $50/month provides education for one household, connecting them with weekly, free, expert guidance from movement disorder specialists.
