The lasting impacts of scholarly debates - MDS 40th Anniversary

Today we're gonna be talking with two of our longstanding members from the European section, Marie Vidailhet, who has been a member for 30 years. She is a professor of neurology at Pitié-Salpêtrière Hospital in Paris, France. And Alberto Albanese, who's been a member for 39 years, who is a professor of neurology at Universita Cattolica in Milan, Italy.

Thank you for joining us, both of you.

Prof. Marie Vidailhet: Thank you.

Dr. Sara Schaefer: Alright, so [00:01:00] let's see if we can think back to 30 and 39 years ago, and joining the MDS for the first time. Why did you originally join? And what was the society like back then? Marie?

Prof. Marie Vidailhet: Well, I joined when I was a junior doctor and it was one, almost one of my first meetings far away from France. I was thrilled by the idea of going to that particular meeting because I read the papers of the fathers of movement disorders, Stanley Fahn, of course I was working with him, and David Morrison.

I spent some time in his place, so I was thrilled to see them and to meet the whole community and to learn things. I wanted to learn things, and it was really a great experience. Because people were very happy to share their knowledge. There was a lot of discussion. People were just fighting a little bit each other because they didn't have the same definition of things, and they didn't have always the same ideas on the pathophysiology, [00:02:00] which was part of the fun, by the way.

So I loved it. And then I came every year afterwards.

Dr. Sara Schaefer: And what about you, Alberto?

Prof. Alberto Albanese: I was a fellow with the late to David Marsden in London. And David was a source of energy. It was like putting the fingers into the power supply directly. He was so energetic that he charged me and all of us, of course. And there I became curious about everything but particularly of dystonia.

Dystonia was something that struck me from the very beginning. And then of course, this was became also my favorite topic. I used to say that dystonia is my hobby, whereas Parkinson's disease is my bread and butter. So, that was the start of the story. Then I sent my colleague, my junior colleague to Stan Fahn's.

I went and visited there. So, I was shuttling between London and New York, and it was it was fantastic. Everything was new. Everything was new. [00:03:00] So it was too much to learn to do and every day was something new and new discussion and new hypothesis. Very pioneering at that time. Very much the atmosphere of the pioneers.

Dr. Sara Schaefer: And how has the society changed over time? And I assume size is a big one there. But in what other ways? And how has it impacted your careers? Alberto. 

Prof. Alberto Albanese: The society has changed very much. I attended the first Congress in Munich, which was number two in the story of the MDS Congresses. And the society has changed again, from the pioneering atmosphere into a more solid structure.

Answers started to arrive. So the question changed from the very basic questions. They became more elaborated questions, more on the details. The fundamentals became clear gradually over time. So there was a mature phase. [00:04:00] My definition could be that now is the post-mature phase in the sense that it's very well mature stage of the field and of the society.

It's very much different from those starting times.

Dr. Sara Schaefer: What about you? What's your perspective, Marie?

Prof. Marie Vidailhet: That's a story of life that is coming from something like childhood and adolescence with all the provocative energy and fighting and getting friends too. And now we are in a bigger room, so there are two important points. First of all over the time, the creativity of society some new things like video challenge, ground round, and plenty of things. Something which may be back to the past or to the juvenile time. We still have more controversies and basic science and things that could, just attract very young people. The one who are PhD students, and they have doing some work on clinical practice, but they [00:05:00] also invested in neuroscience and research.

And that will be something more challenging possibly for them including live platform. Like when we had the poster tour when the senior doctors were just challenging the junior people. It was a little bit of a thrill, but it was also very interesting because you met people in person and it was more a personalized part.

So I think that we have good and bad of getting old. The good thing that you get, experience the bad things, that you are less fierce and fighter, and we have to be back to fighting with each other with a friendly atmosphere and a scientific challenge.

Dr. Sara Schaefer: Certainly it's it's important to keep having debates, right? And of course the last day of the Congress is always the, those controversies and those debates on key issues in movement disorders, and I'm sure that popular session will continue. Keep us in fighting phase, right? As you say.

What [00:06:00] do you foresee for the future of the society and what keeps you coming back each year? Marie?

Prof. Marie Vidailhet: I think I haven't missed any of those. I went to all of them and I think that it's always more difficult to have creativity. Maybe we could ask as the younger people, the newcomers, what they want to have because they have ideas. They are looking for something, they don't know what, but they may have an influence. On my part, I think that I would get, back to the future if I say, because I would like to go back to a little bit of in small groups, this kind of controversy work in progress, challenge. I put that in my notes that I sent to the MDS as a suggestion. I dunno if people will select that suggestion, but I think it'll be interesting to have this work in progress kind of things.

On small groups and on big platform conferences.

Dr. Sara Schaefer: Yeah it's important to keep [00:07:00] those one-on-one interactions and getting to know each other and having those face-to-face time as we grow, right? That those are the conflicting challenges of any growing organization. 

Prof. Marie Vidailhet: Sure.

Dr. Sara Schaefer: And Alberto, what's your take?

Prof. Alberto Albanese: I think, we shouldn't focus only on the main Congress, the yearly Congress. I think there are so many other initiatives that are of interest, also more focused regional or local congresses and personal interactions. I think this is something that we shouldn't forget about. 'cause the Congress, as an Italian thinking to the good old times, in the Middle Ages is when people used to go to the market, and with their products. So the Congress is like going to big market, which lasts for a few days. And then you have your products and there are other products and you in teract with others.

And that, that is the main Congress. Then there are a number of other interactions outside the main Congress, which are very much important and I think are the [00:08:00] real strength of the society. So it's the diversity of interactions. I can remember the times when there was the first implants in DBS implants.

I used to go to Grenoble and it was just everybody was looking around. And that was of course happening in a very specific place. But everybody knew each other. And the reason why it could happen is because we were part of a larger homogeneous set of relationships.

So I think the society is not just the Congress, it's much beyond the Congress and I think that is the spirit that has to be kept alive, in my personal opinion. The Congress is an epiphenomenon of a larger initiative that really is the real blood of all the story, in my personal opinion.

Dr. Sara Schaefer: Absolutely. I totally agree. So let's close by having each of you just tell me about a favorite memory or a favorite Congress moment, or a very inspiring [00:09:00] person that you've gotten to know through the Movement Disorder Society. Alberto. 

Prof. Alberto Albanese: Okay. One memory, 2012, we were in Dublin, and the year before 2011, we had met with the panel for finalizing the classification of dystonia, which was new and was published one year later in 2013.

But we were stuck. I thought originally that putting together so many clever people, very knowledgeable, could be a solution. But having so many clever and knowledgeable people created a stalemate because they were very opinionated, everybody had different opinions. And so what happened is that we were stuck 2011.

So 2012 we went to Dublin. And in Dublin speaking with colleagues, the idea came, okay. You have one group that doesn't really work because they're all stuck and not able to make any consensus. Let's make two groups, one against each other, the idea of having a duetto, not of people, but of [00:10:00] groups created this swing between different opinions and different positionings.

And so eventually we ended up with finding a consensus because each group was criticizing the other group. And so they ended up finding a way to agree altogether. And that happened after Dublin. Soon after Dublin, the day after the Congress, we met all together. And so the message was, okay, each group can criticize the work of the other group.

And that was the key for finding the consensus we published it in 2013. It was a really a revolution because of the two axis. So the idea came about having Axis One and Axis Two. Which you can see also as a reflection of the two groups. So two groups were fighting and two axis came out somehow which was phenomenology Axis One and etiology Axis Two. So that was very interesting and that [00:11:00] was really possible because of the environment, made it possible.

Dr. Sara Schaefer: That really goes back to what Marie was saying about how healthy debate and energy is thrilling and fun, but also productive and one of the things that the society really fosters. Marie, what about what your favorite moments.

Prof. Marie Vidailhet: I think I would say moments when you can have the two signatures of the MDS altogether, which is challenge and friendship, however. So the two goes together, by the way. And that's what is thrilling because you go to that every time because you want to find, again, this thrill of challenge and friendship forever and balance that you create for life.

So I will tell a personal story. It was the first time when I was a part of the ground rounds and I asked to examine a patient who had a very rare disease. It was very emotional to see this patient because he almost died of his disease.

[00:12:00] And also he wanted to stand on the stage and said I was a volunteer for this grand round. Because if anybody in this room with respect, probably more than 3000 people, if anybody in this room will see one day or the other, somebody who has symptoms like mine, he will know about his disease and they will cure him because he almost died of his disease.

So that was the first story, and that's a very, very emotional. The second thing which was emotional, was my emotion because I tried my best to find a diagnosis and all of a sudden he has jolt and I say, good, that's something which is related to a very rare disease, which has immunology and was antibodies.

It was startle. And I started in Davis Marsden's group when I was in London. So it was the first connection and the second connection at that particular moment, the lady who was presenting this story said only one person made the diagnosis of this patient. And it was the head [00:13:00] of the Canada was it was Tony Lang. He was the only person who made the diagnosis and said, oh God. And Tony Lang was sitting just in front of me. Said, okay, I have to make it. So I just found it and I said, okay, I got to the diagnosis. And it was the same. It was the right diagnosis. That was the emotion. Because I admired him so much that I didn't want to deceive him. But also it was a stress on me because I didn't want to also be a disappointment for the people who help me to do this grand round. So you do people not for yourself, not for your own glory, so to speak.

We never look for that. You do that because you want to do that for patients. You want to do that for your friends, and you have to do that to keep up to the friendships that you get with people, to keep with the connection that you have with people and to thank them for what they are.

Dr. Sara Schaefer: I am sure that many friendships have formed with grand rounds examiners or [00:14:00] video rounds panelists who are in the trenches together just trying to do their best in front of an audience of many thousands of people. So

Prof. Marie Vidailhet: Nobody should have cardiac disease and get on the stage.

Prof. Alberto Albanese: It's a lot of stress.

Dr. Sara Schaefer: Oh, I can imagine. Absolutely. Okay, thank you so much for sharing your stories with us and what keeps bringing you back to the MDS. And we'll see you in Seoul, South Korea.

Prof. Alberto Albanese: Yeah.

Prof. Marie Vidailhet: Thank you. Thank you having us. Thank you for having us, and you did it beautifully. Thank you so much. [00:15:00]