2023 World Parkinson Congress Highlights

This transcript has been edited for clarity.

Kathrin LaFaver, MD: Hello. I am Dr Kathrin LaFaver. I'm a movement disorder specialist in Saratoga Springs, New York. I have the pleasure today to talk with Dr Subramanian, who is a movement specialist, director of the PADRECC in Los Angeles, and a clinical professor at UCLA.

We will be covering some highlights today from the recent World Parkinson Congress that took place from July 4 to 7 in the beautiful city of Barcelona, Spain.

Indu Subramanian, MD: It was pretty remarkable after COVID-19 and being physically separated from our patients and then, with masks, largely, to be in a conference room in a beautiful city across the world and seeing people arriving from all over the world with Parkinson's.

It's a really unique conference because it brings together people living with Parkinson's disease and the people that care for them, and then also, basic science researchers, physicians, and allied health professionals of all sorts — including sex therapists, dietitians, you name it.

LaFaver: For those of us who did not have the opportunity to attend, why don't you walk us through some of the themes were big at the congress and some of the things that we missed?

Subramanian: I think that much of what I was struck by was just people coming together to care about the global impact of this disease and how, for example, in Africa, there are still many countries in which we can't prescribe levodopa at all.

Parkinson's Stigma

Subramanian: I think there's been a push and I know that colleagues, even at the Movement Disorder Society, have made this a mission over the next few years to see if we can get these vital medicines to people living with Parkinson's, no matter where they live and make it accessible. I think that's been part of the push, and there were many presentations on some of this information.

A highlight for me from the African experience was Dr Natasha Fothergill-Misbah, who has written a paper about stigma in Africa. We met and were able to applaud the beautiful work of a gentleman named Hennington, who is the son of a Parkinson's patient. She passed away a number of years ago but had really lived with the stigma. They had hidden her in a back room, snuck food through the door, and had kept her away from anyone who would come over or let her out.

He has realized that this is not the way to treat these folks, now that he is more educated. There was a sense that there may be some witchcraft involved or unclear education and disease awareness in many of these parts. He has done really beautiful grassroots work.

He described taking pieces of paper and writing the symptoms of Parkinson's disease down, posting them in buses locally, having his phone number there, and telling people to call him if they had those symptoms. Through that type of grassroots intervention, he has gathered people living with Parkinson's disease throughout Uganda and has been able to dispel these myths and educate and bring people together.

There's now grant funding, some push even at the Movement Disorder Society, to bring support groups, education to nurses, and people on the ground to really raise disease awareness in the continent of Africa. This is really a beautiful, beautiful story. He won an award at that meeting. I think that was one of my highlights. I got to meet him. There was great energy.

LaFaver: Thank you for sharing that. It's also a good opportunity to remind us at a world congress to not only talk about therapeutic updates that might be accessible to us in the US or other parts of the world, but also to realize that what we talk about at many of our congresses is not applicable to everyone. I think that's a really important initiative.

I was following along on social media, and I did see chatter around the topic of self-monitoring of Parkinson's symptoms. I don't know if you'd like to talk about that.

Self-Monitoring

Subramanian: Dr Sara Riggare just got her PhD, and I'm very proud of her. She's a very amazing woman and mother living with Parkinson's disease since I think her teens. She has worked with Professor Bas Bloem on a PhD thesis around monitoring for patients living with Parkinson's. Her sense is that physicians see patients in the office 1 day out of 365 or 1 day in 6 months for a few minutes, and that timeframe is used to then treat the next 6 months.

She thinks that gathering information, being aware of your own symptoms through tracking, and bringing this information to doctors is really key. There was a large amount of information about using remote monitoring, more about telehealth and its benefits, and engaging not just that 5-minute motor exam in the clinic, but can we get a global sense of how the person living with Parkinson's has been doing for the past 6 months using various data tracking devices?

I think on that note, some apps were also presented. Richelle Flanagan, who is a colleague — we wrote a paper on gaps in the care of women — made a beautiful app that just is launching called My Moves Matter. It incorporates, as an example, the menstrual cycle and how that may affect women living with Parkinson's disease or the perimenopausal timeframe and trying to track symptoms.

Many women have found it hard to figure out which symptoms are more from the hormonal changes and which are related to their levodopa changes. To be able to give a time period of tracking symptoms to the physician to be able to regulate medicines has been an aspiration. This was thought of by women for women and has in the past year been brought to reality. It's pretty amazing.

Diet and Lifestyle for PD

LaFaver: You're really interested in lifestyle and wellness interventions for Parkinson's. I think there was a keynote talk about the role of a dietitian in Parkinson's. Any updates on that front?

Subramanian: I think this type of meeting brings people together who ordinarily wouldn't be able to connect. Much of what I've been noticing is that we are very siloed in our neurology box, and we feel overwhelmed with the 15-minute follow-up or the 30-minute follow-up and how are we going to counsel on exercise, diet, or social connection — things that we know can make a difference.

Engaging the multidisciplinary team and thinking about who we may be able to make a referral to and in a proactive way is important. Much of the meeting was talking about the concept of prehabilitation. We've also talked about a wellness prescription that we're trying to formulate with a wellness task force at the Movement Disorder Society.

You have a disease with a trajectory, and we now have a sense that we may be able to identify people in the prodromal phase with a number of things like sense of smell, sleep, issues around behavior disorder, biopsies, and genetics. We have these mounting ways to diagnose this disease earlier and earlier. What should we offer those patients?

The sense is that we should really be engaging the multidisciplinary team. A number of physical therapists from around the world and other folks have been presenting on this concept of not just reacting to things, but proactively educating, maybe meeting the patient at diagnosis, and then teaching people how to live better through a time frame.

That's very exciting to me because when we talk about wellness, we're really talking about proactive lifestyle choices that patients can make and then feel like they are the agent of their own outcomes. That message throughout was defined by patients: They don't want to be passive; they want to be active members of their team at the center and have personalized approaches to them.

It was very helpful to have patients come and describe that out loud and have various types of healthcare providers on the ground to support that.

LaFaver: That's always a good reminder for us: We don't have to do it all ourselves. It's really important to have a team that can help provide the best care for each patient.

COVID-19 and PD: The Latest

LaFaver: One topic I definitely was curious about, and you had mentioned was on the agenda, was Dr Alfonso Fasano talking about COVID-19 updates and Parkinson's. There was a sense at the beginning or middle of the pandemic that there might be an increased rate of Parkinson's. What's the update on that?

Subramanian: He presented, I think, a series of 44 articles with 93 patients involved. These were just general articles that he had screened. Many articles were published during that timeframe that have since been redacted. A large number of things were rapidly thrown out there, and then when people really looked at the data, there was redaction of some of that information. The sense some of that hype has, I think, been tempered a little bit.

In this series, 93 patients were patients living with all kinds of movement disorders. There was a subset with parkinsonism, and in that subset, there were some that were levodopa-responsive. When you look back at those patients who are levodopa-responsive, there is a sense that those patients had prodromal symptoms. The sense that de novo Parkinson's disease caused by the virus is very rare, if it does occur, is the take-home message.

LaFaver: That is very reassuring to hear that this connection that was feared, of COVID-19 triggering Parkinson's disease, seemed not to pan out and was more association rather than causation.

I know it's always hard to summarize 4 days of a meeting in 10 minutes, but are there any other topics you wanted to talk about or mention to us?

Women and PD

Subramanian: Just to update on the women's issues in Parkinson's, Soania Mathur, who is a family doctor living in Toronto, is a remarkable advocate. She and a team of other women did a survey of 248 women, looking at their needs, their thoughts, and things like that.

I think we still have a very strong sense that women themselves are not really aware of how hormones and things like that can affect their Parkinson's. I think up to 50% of them did not know much about this area at all. They also felt like their healthcare team was not interested and was not inquiring about any of the gender-specific things in the space.

Women have been rallying together. It was really beautiful to meet the women that had spearheaded the paper that we wrote. There's a new pregnancy registry that was just started by Annelien Oosterbaan, who is in the Netherlands, also working with Professor Bloem called PregSpark.com. This is a registry for women worldwide. If we have folks out there with women who are pregnant with Parkinson's, please have them go on the site and register. We really want to gather information. The women themselves are doing this grassroots work. It's very exciting.

Just on the note of Richelle as well, on the dietitian piece. She did a beautiful job describing the role of a dietitian on the team for Parkinson's disease. I think they are sometimes in an underutilized specialty. Educating more dietitians about the specific needs of Parkinson's and then engaging a dietitian, if you do have one in your midst, is definitely something that she spoke very passionately about, as she is a dietitian living with Parkinson's herself.

Thank you so much for the opportunity to bring some of the excitement from that meeting. If anyone is out there and wanting some things to really engage them if they're burned out or to rekindle some sparks about why we went into medicine, I think the field of Parkinson's and the unmet needs are very ripe for getting involved in advocacy.

LaFaver: Those are good parting words. I think it's always good to remember partnering with our patients rather than just seeing them and giving them a prescription. We need to have that multidisciplinary approach and rely on multidisciplinary teams to achieve that.

Excellent, thank you so much. It was good talking to you, and have a good rest of your day.

Follow Kathrin LaFaver on Twitter @LaFaverMD

Follow Indu Subramanian on Twitter @DrISubramanian

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