5 Themes From the International MDS Congress

This transcript has been edited for clarity. 
Indu Subramanian, MD: Hi! Welcome, everyone. We’re so excited to bring you the highlights of the International Congress of Parkinson’s Disease and Movement Disorders (MDS) that just happened in Philadelphia. I am Dr Indu Subramanian. I’m based in Los Angeles. 
Kathrin LaFaver, MD: I’m Dr Kathrin LaFaver. I’m a movement specialist in Saratoga Springs, New York.
We’re just back from the meeting in Philadelphia. I didn’t go last year, so it was really nice to see everyone in person. It’ll be nice to have some time to highlight some of the takeaways for those who weren’t able to go. 
Indu, do you want to start? What was your favorite topic this year? 
Subramanian: In the first session, the first plenary, within the first 10 minutes of the Congress, we had Bas Bloem talking about holistic care in early Parkinson’s disease management. He highlighted two of my papers, which was exciting. It was about what it means to the person living with Parkinson’s to get this diagnosis, and how to deliver the diagnosis with compassion and hope, which was the theme of one of our papers. He brought in the concept of really bespoke care to the person sitting in front of you and brought in another paper of ours on women and gaps in care for women. 
That set the tone for the meeting. The person matters; it should be patient-centered care. I think one of the themes of that session was also lifestyle, which is really exciting to you and I, Kathrin, thinking about exercise and diet. He really thought about integrative medicine or holistic medicine, and talked a little bit about the history of complementary or alternative medicines and the fact that there are things that are out there that are dangerous, that are very expensive to patients, that we really need to caution patients about, but also that there are things that are tried-and-true in Western medicine.
His lecture was called “Fifty Shades of Grey,” or a take on that, about this grey zone in which we have medicines that we don’t have a great evidence base for, yet patients, anecdotally, feel better. We should be listening to the patient, trying to understand their experience, and perhaps then using some of that to study this area more. That’s very exciting to me because there are ever-increasing issues with getting funding for the types of studies in this arena — a lot of history of either Western traditional medicine with pills and surgeries in movement disorders, and everything else is considered a sort of snake oil, so to speak.
I think we’re finally seeing a marriage, which is sort of what our program is about — the in-between grey zones and what we can take away. That was really very exciting to see.
LaFaver: In that same realm was the lecture of Dr Janis Miyasaki on neuropalliative care for Parkinson’s, so, not just focusing on the motor symptoms but really the whole person, and how we can support people and their families living with this diagnosis throughout the entire spectrum of a disease.
Subramanian: Janis put some slides up about the caregiver and caring about the caregiver, talking about the end-of-life timeframe, and bringing out a very beautiful concept of preserving the identity of the patient. I asked her a question about how to do this — how can we operationalize this in our clinics? 
I believe that some of the palliative care principles that Janis talks about can be brought in from diagnosis and understanding who the person is, what brings them value and meaning in life, purpose, and preserving that identity throughout their disease time course into their later years.
She mentioned a case study of a physician who got sick with Parkinson’s. Not being able to see patients had really changed their ability to value themselves and how to incorporate new meaning to allow them to preserve their identity, and hence, their quality of life.
LaFaver: Lots to learn from our palliative care colleagues. I want to shift focus a little bit to the main theme of the congress, which was artificial intelligence, or AI, in the movement disorder clinic. Dr Maria Stamelou really highlighted that, and there were many sessions on how AI is currently already used both for diagnostics of movement disorders and tracking of symptoms vs all the different technology. 
I did want to highlight two sessions in particular. One was the Stanley Fahn Lecture Award, which was granted to Dr Marina De Koning-Tijssen from the Netherlands. She gave a wonderful lecture with a bit of historical context of where we are coming from and where we’re going. Her lecture was “Next-Generation Phenotyping in Movement Disorders.” 
Their clinicians have a consortium to inform and learn AI, and to adopt algorithms to help with diagnosis. Especially as her focus is hyperkinetic movement disorders, that helps us decide whether we are seeing myoclonus or chorea. 
She made a very good point that, ultimately, the algorithms need to be informed and trained by expert clinicians. At least at this point in 2024, the tools should really help to support us rather than take the decision completely out of our hands. Again, there are many subtleties in movement disorders. 
Another highlight session of the Congress was the controversies session, where two different viewpoints are pitted against each other. One of the sessions was about whether AI can replace the clinician in making a movement disorder diagnosis, and Dr Ray Dorsey from University of Rochester gave the pro argument.
Dr Abhimanyu Mahajan from University of Cincinnati argued that no, we are not quite there yet. The audience response sided largely with him. Dr Mahajan made many good arguments for why there are things that clinicians — or humans — bring to the table, and he made it very entertaining.
I highly recommend that people watch the lecture. I want to close with a quote by Dr Bas Bloem, and I’m paraphrasing a little, but he was saying that AI may make healthcare a bit more efficient and hopefully should allow clinicians to spend more time with patients and with their students, and allow us to dig deeper into what matters most to people.
Hopefully that will come true and we’ll be able to get AI to do some of the labor-intensive work, and then have more time to spend with patients and focus on the things we just talked about, such as the opportunity to see patients with empathy and maybe have a little bit less time pressure than we often currently do in our clinics.
Subramanian: I loved when Dr Mahajan said, well, if you were getting a diagnosis as weighty as Parkinson’s, would you want that to be given to you by a robot or some sort of computer or somebody using that sort of thing? You would really want to know with clarity what you’re dealing with and be able to understand who you’re getting this diagnosis from and connect with them.
If we wouldn’t want this for ourselves or our family members, then we should be very careful about treating the masses using this type of technology, especially in such a critical timeframe as giving the diagnosis.
In the end, the conclusions were that we matter, the patient matters, and our rapport and connection with the patient and their family is really at the core of what we do and why we do this.
LaFaver: Very well said. Another big topic was the focus on environmental risks and neurodegeneration, connecting the dangers of air pollution and even climate warming on the rise in neurodegenerative diseases.
Indu, what was your take from that? 
Subramanian: I was really excited to see this in the plenary because I think we haven’t had this type of content before. The climate change issues are something that I’ve been interested in, and we’ve had an interview in this series about that.
It really speaks to how at risk our patients are, living with Parkinson’s, and how we are ill-equipped to deal with the rising climate issues. Also, these measures that might be subtly happening in the background are really influencing the total risks of populations to get various types of diseases, including neurodegenerative Parkinson’s. Anything we could do to target this as a global problem will hopefully help the Parkinson pandemic, as we talked about. 
Additionally, the last speaker in that session had talked a bit about the contribution to, for example, Alzheimer’s disease, and all these different pieces that might be modifiable. If we thought about that same sort of modifiability of the risk for Parkinson’s and took control of some of the things that we have in our own armamentarium, including certain chemicals that are still being used throughout the world, I think we may be able to at least chip away at some of the modifiability. 
We may not be able to change genes and risk, which is obviously a big component, but these other things… When you add them together and you look at the sum total of what we can modify, and then if you add on things like lifestyle measures of trying to be proactive to help populations at risk, I think we’re in a timeframe where we may actually be able to really talk about secondary — and possibly even primary — prevention of this disease in our lifetime. 
We’re not going to be able to do this unless we really work together with policymakers. Ray Dorsey and Bas Bloem both stood up at the end of that session and said that we, as a society, should really take a very strong stance against use of these chemicals, and we should be very clear about our messaging. 
Hopefully we’ll see some sort of response from the MDS moving forward. As Parkinson’s disease doctors, I think we’re more acting as advocates, which I’m really excited to see; we’re not just passive recipients of knowledge at this forum who are then going back to our clinics and doing the same old thing.
LaFaver: As part of that same plenary, there was also a session on infection and Parkinson’s. One of the surprising things for me was that there is a possibility that we are going to see an increase in Parkinson’s related to the COVID-19 pandemic. I think there was initially a large amount of concern about that and correlation with the Spanish flu and so on. I personally was not aware of that. This is still very much on the radar. 
Dr Richard Smeyne highlighted in that session that there might be a delay of, like,5-7 years until we really see these numbers because it might be more like a multiple-hit theory and not a single cause of why this will bring on Parkinson’s. I think there’s more to come and more to be studied, but it was definitely a high-yield session.
Subramanian: There was also some great content on functional neurologic disorders. I was excited to see that you presented on something.
LaFaver: Thanks for asking about that. It was a really nice session with David Perez, from MGH in Boston, and Dr Mark Edwards and Tereza Serranova as speakers, entitled “Current Perspectives on Functional Movement Disorders” (FMDs).
Dr Serranova focused her session on how to build a service for functional movement disorders. We have learned about some of the more underlying pathophysiology and some of the treatment advances over the past decade.
I think there’s still a big gap in bringing these services to people. She made a very practical session on how to start an FMD service and highlighted several other resources for people to check out. I think that’s really a high-yield talk for people to watch, especially if you are working in an area that currently has no easy treatment avenues for people with FMDs.
I had the pleasure of sharing the podium with Dr Ai Huey Tan from Malaysia on another communication topic. We were asked to speak about how to break the news in movement disorders and how to communicate a difficult diagnosis with a patient and their family.
I talked about giving a diagnosis of FMD and Dr Tan spoke about giving a diagnosis of atypical parkinsonism, and she made some really wonderful points, bringing in concepts from the palliative world on how to address a patient’s emotion, and really understanding the goals and what is important for a patient, plus how to build connections and avoid certain pitfalls.
Subramanian: I got to present on a topic about disparities in care for various populations. I talked about gaps in care for women, on both the management and research sides. There was a talk about genetics and involving global representation in genetics. 
The final speaker was Fay Gao, who will be part of the hosting crew in Hawaii for next year’s congress, talking about delivering care in limited-resource environments. She talked a little about the history of Hawaii and some of the Indigenous populations there. Different folks have come to different places in the world and changed the dynamic of healthcare and what health is to populations. It was a really interesting session. I highly urge you to watch that as well. 
LaFaver: That’s wonderful. It was such a rich congress, and there are so many things to learn that it’s impossible to cover them all. One thing I did want to make sure we mention is some of the educational offerings of the MDS, and I know you’re involved with some of them as well.
I had an interesting conversation with Dr Shilpa Chitnis, who’s in charge of the LEAP programs of the Leadership Academy of the MDS. That’s specifically geared toward younger members who want to develop their leadership skills. They have run this program for the past 8 years and really made a big change this year to make it accessible for a larger number of people.
There’s now a virtual component of what they call the basic LEAP, and then the more advanced LEAP is going to be offered in person prior to future MDS congresses. This is definitely a good opportunity for people to check that out. There are also many special-interest group meetings that happen, such as a reception geared toward women in the movement disorders field.
There’s an expansion of the educational roadmap that the MDS has been offering, and also more online lectures available for people to watch on leadership topics. MDS really shows us that it’s not just about the annual meeting; we really have opportunities to connect and learn throughout the year. 
Subramanian: I was involved with a fun networking program for the young members. We were standing at tables and my subject was outreach. Different people had talks about work-life balance and things like that. It was a very well-attended reception. 
I highly urge everyone out there who has an interest in movement disorders to get involved. There’s also an increasing offering, for example, with allied health professionals. We really have a shortage of providers who are taking care of these diseases that we are passionate about. We really just need to increase our reach and expand education empowerment to help people living with these various disorders. 
It was great to see you there, Kathrin, after some gap in time. Many of these meetings also foster friendships and collaborations that last a lifetime.
LaFaver: MDS is doing a great job getting people together and getting people talking. I think that’s a wrap. Again, I urge everyone to check out the virtual recorded sessions that are going to be available.