Over the past twenty-five years, the number of people with Parkinson’s disease worldwide has doubled, from 3 million to over 6 million people. By 2040, that number is expected to double again. This disease, alongside other movement disorders, is sweeping the globe, touching families everywhere. Now more than ever, we need experts in the field to support this burgeoning population of people with movement disorders. The thing is: in the United States, there are more than a million people with Parkinson’s and 3 million more with other movement disorders, but only 660 movement disorder specialists. There are not enough expert practitioners to meet the need—and, for people living with a movement disorder, this can mean the difference between thriving and just surviving.
Kelly Papesh, MSN, DNP, CMRD, the Clinical Director of PMD Alliance, and Sherrie Gould, NP, CMRD, who recently left her longtime role in movement disorders at Scripps Health, have been empowering people with movement disorders for decades. Now, they’re ready to amplify their impact, expanding access to and revolutionizing movement disorders care. This April, they’ve launched NeuroMotion Telehealth, bringing expert virtual care, high-quality treatments, and compassion to people with Parkinson’s and other movement disorders in Montana, Nevada, and Wyoming. And they’re just getting started.
“In so many places,” Kelly said, “there’s no care. Only 9% of people with Parkinson’s disease are seeing a movement disorder specialist. This means that 91%, no matter if they’re living in rural or urban areas, still need more access to care.” In Montana, Nevada, and Wyoming, where NeuroMotion Telehealth is starting its remote care, access to a specialist is so rare that many people living with movement disorders have to travel to Colorado or other bordering states just to get the care they need. And the gap in access is only growing. Each year in the United States, about 90,000 people are diagnosed with Parkinson’s disease, but only about 40 new movement disorder specialists enter into practice.
For Kelly and Sherrie, they’re not merely jumping on the latest trend by launching this company. They’ve been in the trenches for years, not only working with patients, but building the foundation for expanded access to care. Both have been pivotal in the development and leadership of the Association of Movement Disorder Advanced Practice Providers (AMDAPP), an organization that empowers nurse practitioners (NP) and physician assistants (PA) to “connect, refuel their inspiration, deep dive into further education, and collaborate to enhance the lives of their patients.” In fact, AMDAPP launched a Certification in Movement & Related Disorders for NPs and PAs who specialize in treating movement disorders, including Parkinson’s. This is crucial to filling the gap in care. AMDAPP’s certification ensures that NPs and PAs have the expertise to provide top-quality care to the rapidly expanding number of people who need it, alleviating the burden on movement disorder specialists and transforming the lives of patients. Kelly and Sherrie are proud to be two nurse practitioners certified by AMDAPP.
Recently, Sherrie called the Parkinson’s Association of the Rockies to introduce herself and NeuroMotion Telehealth. On the other end of the line was a woman who oversees all of the PD support groups in Wyoming. “When I introduced myself and told her a little about our company,” Sherrie shared, “she said, ‘I just have to put down the phone. I have to do my happy dance!’” Sherrie smiled. This enthusiastic response is not unprecedented. Sherie said, “I’ve talked to other people who are like, ‘Oh, my god, we have been waiting ten years to get this kind of care in our community.’”
Right now, most people in states like Wyoming are being treated by their primary care physician, not practitioners who have advanced, specialized training in movement disorders. Sherrie and Kelly both suspect that many of these patients are receiving older treatment standards, like Sinemet, the generic medication for Parkinson’s that’s been around for over fifty years. In the past couple of decades, innovative, advanced treatment options have skyrocketed. “We’re not just looking at generics,” Kelly said about their practice. “We’re going to use top of the line treatments—the newest, most advanced therapies—because we are experts in those.”
And with virtual care, they’re able to send a referral for imaging or labs or physical therapy with the click of a button. In fact, as a couple deep brain stimulation (DBS) device companies prepare to launch remote care options, Kelly and Sherrie will be able to work with these companies and their patients to program their DBS devices completely remotely. It’s a revolution in care.
As nurses leading a nurse-practitioner-owned company, Kelly and Sherrie are also experts in compassion, in listening deeply and tailoring care to the whole person, and in empowering their patients through education. “As nurses, it’s always been about the families, about the community, about the total care of the patient. That’s what a nurse is trained in,” Kelly said. In fact, this is what fuels them. “This is not just about me and Kelly going in on our white horses and saving lives,” Sherrie said. “This is about connecting our patients with all the proper resources because we know that people who get properly connected live their best lives.” A central focus of NeuroMotion Telehealth is not only providing top quality therapeutics, but linking their patients up with support groups, speech therapy programs, physical therapy—everything they need from the comfort of their homes. Kelly and Sherrie are committed to having their pulse on the needs of the people and communities they’re working with.
Expanding access also means making sure care is affordable. “We are a direct pay office,” Kelly said, meaning that while their telehealth visits aren’t covered by insurance, patients can use their insurance for referrals and for medications, lab work, imaging, and more. “We are affordable,” Kelly insists, “and we are able to give our patients the care they need, not limited or restricted by what insurance dictates to us.” As they expand, they aim to apply for nonprofit status, allowing them to offer scholarships for care.
In fact, expansion is on the horizon. NeuroMotion Telehealth has a handful of physician advisors who serve as resources, advisors, and mentors. But their aim is to broaden access to care through nurse practitioners like them. “We plan on bringing other certified nurse practitioners onto our team and inviting them to see patients in their respective states where they’re licensed,” Kelly said. Everyone in their company will be certified in movement disorders.
Talking to Kelly and Sherrie, their passion and their love for the movement disorders community is clear. “Every day, every patient, every story is different,” Sherrie said. “I never ever, since working with this community, have gotten up and said, ‘Oh, how many patients do I have to see today? Because the beauty is that you can give them so much value. And the patients are so hungry for knowledge, for education. They devour the information offered. And they tell you how appreciative they are. I don’t think there could be a better job on the planet.”
“I echo all of that,” Kelly added. “I would start every patient visit by really asking, ‘What is bothering you the most?’ And that’s how we determine what the visit is going to look like. Because there isn’t one day or one person that looks the same. By identifying and tweaking that one thing—whether it’s sleep, constipation, cognitive changes, motor changes—you can really start to make their life just a little bit better today.”
In fact, what buoys them both is that there’s hope. “There is research being done all over the world to try to find a cure for Parkinson’s, to try to slow progression,” Kelly said. “When we talk to patients about new therapies, there’s immediate hope. When we talk about what’s on the horizon, there’s hope. You can see it in every patient. Yes, today may be challenging or you’re facing something really tough, but there’s a way we can help improve today by a small tweak. And, down the road, there might be another option.”
At the end of our conversation, I asked Kelly and Sherrie to describe each other, to put their unmistakable bond into words. Kelly started: “If you haven’t met Sherrie, you need to. If you are in the same room and you breathe the same air as her for a minute, you’ll be immediately inspired and feel passion. It makes me tear up. I am the luckiest person to get to be in her energy every day…She’s like, ‘We can do this.’ And she believes it. And she makes it happen.”
Kelly and Sherrie have that powerful positive attitude in common. In launching this new endeavor, “we have no one to follow,” Sherrie said. “Some people confronting the challenge of starting a company would just be overwhelmed. Oh, my god, there are so many things on our list. But Kelly’s just like, ‘Let’s have fun.’ She has a phenomenal attitude, never flustered, always figuring it out, always calm.”
“There are so many roadblocks in pioneering something new. Noise we could listen to. But we know we’re going to help people. And I think that’s why it’s going to be successful.”
– Kelly Papesh, MSN, DNP, CMRD
“There are so many roadblocks,” Kelly said, “in pioneering something new. Noise we could listen to. But we know we’re going to help people. And I think that’s why it’s going to be successful.”
Sherrie nodded her head: “There’s no such thing as too big for us. And I absolutely promise you that we’re going to carry this exact attitude to our patients. My entire day, with every patient, I tell them, ‘Yes, you can.’ I don’t want to hear, ‘No, I can’t.’ So if we’re talking about taking a walker and even going for half a block, I make them pinky swear they’re going to do it and I will follow up with them in one week. I tell them, ‘I want to know you did it. Because you can.’” She went on, “That’s an important part of who we are. When we live it, we exhibit it. That’s the definition of our company. That is going to permeate into every single patient visit we have. And how exciting is that?”
If you’re excited, you can visit neuromotiontelehealth.com to learn more and book your first consultation.
