Learning From Patients and Looking to the Future of Movement Disorder Care

Jill Farmer, DO, MPH

In June 2022, the PMD Alliance, in collaboration with Georgetown University Hospital, put on the inaugural Advanced Therapeutics in Movement and Related Disorders (ATMRD) Congress in Washington, DC. The meeting brought together clinicians from a variety of backgrounds and areas of care, featuring practical advice and insight into the day-to-day clinical care of patients with Parkinson disease, essential tremor, dystonia, and other movement disorders.

One of the speakers at the congress, Jill Farmer, DO, MPH, assistant professor of neurology, and director, Parkinson’s Disease and Movement Disorder Program, Global Neuroscience Institute, sat down with the PMD Alliance to discuss the insights and takeaways for her from this first meeting. Additionally, she shared her perspectives on the current paradigm of care for movement disorders, including the multidisciplinary approach to care and shared decision-making with patients.

What was compelling about advanced therapeutics that made you not only want to attend the conference but to be a speaker?

Jill Farmer, DO, MPH: Being part of this conference was compelling to me because I was one of Dr. [Ferando] Pagan’s former fellows, and whenever I have the opportunity to work with him again, I always jump at it. His vision for this conference, I thought, was fantastically practical in the sense that it was meant to teach people how to treat and manage Parkinson's disease. It is very important to learn the pathophysiology, and some of the mechanisms, and all of that. That comes with time as you delve into the disease. But if you're in the room with a patient, you want to know, “What can I do to help manage your symptoms?” and that was the entire focus of this Congress. I think that is extremely valuable.

Why is it important to make sure that when you're communicating with your patients, that information is accessible for them?

It's important for communication with patients to be accessible because you want to empower them, and you want to educate them. You want to be able to give them a vocabulary, so that when they come back and forth to visits, they can really express and articulate what their concerns are. And not just in your clinic, but in their other clinics as well because chances are, they're seeing multiple doctors, and nothing happens in isolation. You want to be able to tease out if the symptoms are having are from Parkinson’s or their symptoms, or from something related to their heart or their lungs or whatever it might be. Having these conversations so that they can bring it up and feel comfortable and knowledgeable talking about it with you and with their other docs is important.

What does an integrated care to mean to you?

An integrated care team is really, I think, the future of medicine. Multidisciplinary team, that is another term. It means that no one can be an expert in everything. You'll have a doctor or a [advanced practice provider] or somebody that's kind of taking over the clinical role, in conjunction with someone who's going to be dealing with the social issues like a social worker, or a therapist, someone who's going to be taking over the rehab strategies—particularly in movement disorders, rehab is extremely important, because mobility is half the battle when it comes to managing these conditions. You want someone that has a level of expertise in each of those areas to be able to come up with a comprehensive treatment plan.

What is a major hot topic in your mind in movement disorders right now?

Hot topics and movement disorders are always going to be what the future holds. In Parkinson's disease, in particular, looking at the nuances of the disease mechanisms, and how they impact and guide treatment strategies, is really important. What that really boils down to is not just symptomatic management but how can you impact the pathology of the disease to change its clinical course going forward—whether that is to delay the disease, halt the progression where it is, or to actually reverse some of the degeneration that is taking place. The future, I think, is going to be where the research is looking at disease modification. I think that's a huge hot topic.

What do you wish for the Parkinson's community? Or what do you wish your patients knew?

What I wish my patients new is that they should feel free to talk about anything because Parkinson's impacts you from head to toe. If you're not sure if something is related to Parkinson's, it might not be, but at least ask about it because we have a wealth of treatment strategies, both medicinal pharmacologic, alternative med strategies, surgical strategies, rehab, and behavioral strategies that can be combined into a treatment that is unique and individualized for them. I wish they know that no question is a stupid question.

I also wish that they understood that when we're talking about the use of medications, no one wants to give you more medicines than you need. But this is a condition of a deficiency, so the way that you would treat it is to supplement anything with a deficiency. Then, if we give you these medications and help supplement what it is, you might notice that you have an improvement, not just in your symptoms for Parkinson's but in the ability to be able to do other things as well, again, getting to that comprehensive approach. Because if you feel better, then you're going to feel better emotionally, mentally, physically, and all of that.

What have your patients taught you about care?

My patients have taught me the power of persistence. There are times where you think you have the best treatment strategy planned out, and you're building upon your experience and how you've utilized these things in the past, and then the patient will throw you a curveball and say, “I hear what you're saying. But I'd like to do X, Y, and Z.” And they'll challenge you in some way to make it about them. Not in a selfish or in a a mean way by any stretch of the imagination. There’s a saying in Parkinson’s: If you've seen one patient with Parkinson's, you've seen one patient with Parkinson's. It’s remembering that it's not one-size-fits-all. They will come back and ask for more and demand better—and as well as they should. They want to make sure that they're getting the best treatment possible, and you want to be able to provide that for them.

As a professor, what do you want this next generation of upcoming students and healthcare providers to know?

I want the next generation of healthcare providers and students and residents and everybody to be excited at the potential of movement disorders, from every aspect. Not just the academic aspect and the clinical practice aspect, but also the work-life balance aspect. It is a wonderful subspecialty to be in, and we have treatments that work, so you can feel like you are doing something productive and effective with your patients. It's academically challenging because while you think of Parkinson's with movement disorders, it includes a whole host of different conditions, and our ability to see what the genetics has to offer in the future, the ability to see what different disease mechanisms and medications that are becoming more personalized and specialized have to offer in the future is exciting. It has an academic quality that can keep people interested in their entire career.

Then, for the work-life balance part of it, it is a manageable subspecialty. While we have all of this great potential, we still have a finite number of things that we deal with and manage right now. You can feel like you have a good handle on it. It’s predominantly outpatient practices, so you get to spend time with your patients and build relationships and things like that. And I think for the next generation of docs and providers that are coming up, I think they're going to emphasize the balance of work and life—and I don't think that's a bad thing. I think movement disorders lends itself to that very well.

Transcript edited for clarity.