speaker-0: Kristen Nordvall speaker-1: She's here with us today. She is? Yes. you say it. Yay! You never introduce people. This is great. Welcome to The Secret Life of Parkinson's, a podcast created by people living with Parkinson's to help break the stigma of a disease no one likes to talk about. Now here are your hosts, Jessica Krauser and Brian Baker. Kristen, welcome to The Secret Life of Parkinson's. How are you? speaker-0: All right. speaker-2: Thank you so much. I'm good. I'm doing okay. I'm in the Netherlands, yes? Yes. speaker-1: That's right. And you are it's very late for you right now. So it's afternoon for us ⁓ But I'm so glad that you came wanted to come on the show ⁓ You have something very interesting. I think that we haven't touched on yet So why don't you give us a little bit of your background and then we'll go from there speaker-2: I've been a musician all my life. I started singing when I was two. speaker-1: They tell me. before, like, as you're talking, you're singing. speaker-2: Right, right. And I trained as a classical singer and worked as a classical singer for a couple decades. I also had trained simultaneously as a composer at the University of Washington. And then I stopped composing for a while, but then I got back into it and I started working with ⁓ electronics where I could sample my voice and then work with the electronics and processed voice and that opened up a lot of things. one, you know, line instrument into a multi-phonic. could do many playing around with your own choir. Yeah, it's fun. And I did a, I did a, um... speaker-1: That's fun. speaker-2: an artistic research residency at the opera school in Oslo, starting in 2019. And then I started noticing, huh, I'm feeling stiff, I'm feeling like a little weird, I'm having memory issues. And then I developed a tremor, and I went to the doctor and took, she was saying, oh, these things, you're getting old, you know. speaker-1: Getting old, it's stress. speaker-2: Yeah, yeah, exactly. And it turned out that by the end of the research, the artistic research ⁓ PhD that I was doing where I was developing these gestural controllers, I was diagnosed with Parkinson's. And the irony was that I had developed a system that was based on weighted random. In other words, I couldn't completely control it anyway. was the way it was designed. It was designed to give me surprises and be an improvising partner. And I could know what the minimum delay unit, because I would program it into these different buffers, and what the maximum is. But everything in between was a search. And if I had a little more tremor, it didn't really matter. I'd just play with it. I thought that was really... This is the controller that I worked with on my artistic residency. And it's, I'm using wireless MIDI rings and they're sending Bluetooth signal to the computer about where my hand is, what my hand position is. And I have these little switches on the rings that can change what I'm doing with that hand position. And so then I could get away from the computer and just process my voice completely free in the space. speaker-1: Okay. speaker-2: move around with my arms and kind of bring the music out of the air, out of nothing. If you think about a looping where you have a regular, you know, you're just layering over the same time frame, this was a non-synchronous looping. So one layer might be a minute. and another might be just a few milliseconds. And they have different effects. And so it was like weaving all these different patterns over each other. And you'd get ⁓ interesting, unpredictable layerings back. So if I had a little extra tremor, I'm just changing the delay a bit. And then I'd have to play with it anyway. That's how I had designed the system. speaker-1: And you designed it before you were even diagnosed. speaker-2: And I designed it before I was even diagnosed. speaker-1: Wow, that is so interesting. speaker-2: Yeah, then I started really looking into, well, what is this? You know, it was a shock. It was 23, 2023 when I got diagnosed. It was late in the year, so I spent basically 2024 kind of digesting it. And then I saw this call for a project, a research project that would be a combination of an artist and a scientist looking at things that were any kind of combination of neurology and art. And then I thought, that's, I have to find a neuroscientist to work with me because I wanted to really see, well, what was going on in my whole body, in my system when I was feeling things that were so micro micro. But that wouldn't have been ⁓ something that a doctor would have diagnosed as Parkinson's, but I could feel that it wasn't right. So it was like when I would take a breath in, as a singer you're learning to lift your palate. And then... speaker-1: Mm-hmm. speaker-2: sing. ⁓ And when I would breathe in, take a deep, deep breath in, I felt like my palate was uneven. It wasn't opening the same on the left as the right. And that was like teeny, you know, micro movement, right? ⁓ speaker-1: And that is because of Parkinson's. speaker-2: Yeah, I'm sure it is. it was because it's the left side is my Parkinson's side. And I could feel my articulation was more difficult. all the micro things of what you're doing with your tongue, with your lips, with your face, to make a good articulation to be understood when you're singing. And some other things. I was having trouble with pitch, and I'd never had trouble with pitch. And it felt like my tongue was kind of tremoring. ⁓ Interesting. Yeah, so I found a neuroscientist, Dr. Javani Bhattistela, and he was willing to work with me to make a pitch and an application to the Renee Fleming NeuroArts Investigator Awards. And we were lucky and we got chosen to be one of nine groups. She funded nine groups in 2025. Yeah. speaker-1: Wow, that's awesome. So did you guys already do the project? speaker-2: We've done part of it. ⁓ It takes a long time. mean, this is a crazy, totally new thing. Like, nobody has ever done this before. speaker-1: It sounds like it. I haven't heard of this yet before. speaker-2: But was the thing that ⁓ Giovanni Battistella, the thing he was really interested to find out was... what are the brain networks doing when you sing? And he said, you know, there's like a hundred different communication things that are going on in your brain when you're singing a little phrase. And he said, we're going to have you sing. I mean, I had to be the guinea pig, right? To figure out the protocol. So singing in an MRI with these short little ⁓ phrases. like four seconds long, that you'd have to repeat for three minutes. And I'll give you an example of like one of them, I wanted to, I worked with another, the voice teacher that I'm working with, to find things that would kind of suss out different kinds of movements of the palate and the tongue. So one that was using a lot of back of the tongue and a lot of palate. speaker-1: Okay. speaker-2: motion was give huge cans of Coca-Cola, give huge cans of Coca-Cola. So I have to, I mean it was a little higher, anyway, singing that repeated for three minutes. you So the MRI could get all these pictures and they call it dynamic MRI and they were able to make a little video out of it. speaker-1: And an MR. So are they doing it? Is the project to do this to figure out any type of diagnosis or is it to help with like we were actually just talking to somebody from Speak Out, which is the Parkinson's voice project, right? Like we were talking with, know, with Brian mentioning something that he feels like he aspirates. Is that the word you wanted to use? Sometimes when he's eating or drinking, sorry. So is this supposed to help or like what is this going to do? speaker-2: There's a couple things. One is we're just going to see what we see. Yeah. Bringing in, we're looking for a very small sample size. We're starting five classically trained singers that can really, that really know their instrument so that we can get feedback. Okay, what are you feeling? What are we seeing? ⁓ And then five singers without Parkinson's, same age, same. ⁓ speaker-1: Okay. speaker-2: voice type that we're gonna compare. The thing that would be interesting is both to see what is the brain network doing to communicate all these complex movements. and what is happening in the vocal apparatus physically. Can you see any, can we see any commonalities there? The muscles that control the soft palate, which is used so much in singing, also control the swallowing mechanism. So I feel like there could be some really interesting information in there that might help. And you know how they're often, the speech therapists are recommending certain kinds of exercises to strengthen your swallowing muscles either with a whew, you know, using those little things that you blow into or using a straw. speaker-1: or we talked about doing like and seeing how long you can hold it. speaker-2: Mm-hmm. of those things. I think there could be even more specific exercises developed just the same way that the physical therapists who had Parkinson's and the dancers who have Parkinson's were really the ones who upped the level of speaker-1: ⁓ really? I guess I never thought about that. speaker-2: Yeah, because early, like 20 years ago, the doctors were recommending people just sit there, don't do anything, just sit there because you're a fall risk. speaker-1: Mm-hmm not terrible like but I mean it's one of those things that I Joke with my kids about when they're like, how did you guys not know smoking was bad back in the day? Like it's smoking It's like it's the same way you don't realize that being on your phone and social media are bad for you But you'll find out later on and it's the same thing with exercise like it's just crazy that it's like why would you not think to move? It's a movement disorder, but we're learning a lot now and we actually just had a speech pathologist on earlier and It's probably the second or third time that we've talked to somebody about like speech and voice and how we need to really focus on like we, our whole body as muscle. So it's making sure that you're working out every part of it. And we talked Brian into hopefully doing some, maybe you can become a singer. speaker-0: I had no rhythm or singing ability before. speaker-1: So. speaker-2: But everybody has resonance, know, you don't have to have rhythm. speaker-1: Are you tone death? Do you have your people yet? speaker-2: have one professional singer in California. speaker-1: Okay, so they can be anywhere. speaker-2: Well, we'd like to, you know, the thing is that right now the funding is not enough to pay for lots of travel. speaker-1: So they have to come to the Netherlands? Yeah. OK. speaker-2: No, they have to come to Boston. It's happening at Harvard. It's a collaboration at Harvard. speaker-1: Well, let's talk about this because people who watch the show, mean, one, there's a lot of people that are in the Northeast. But then even still, like if we can find people or you can find people through this podcast, what are the criteria? You're just looking for professional singers. speaker-2: think for professional singer who's been diagnosed with Parkinson's, ⁓ anywhere between, I think, 20 and 80, you know, ⁓ and ⁓ can't do people with DBS because of the MRI. Yeah, sorry. speaker-1: Okay. See, we're out. ⁓ Can't sing anyways, but we're out. Like, do they have to have a certain kind of voice or musician abilities or just the fact that they know their instrument like you said, like speaker-2: Just the fact that they know their instrument. we really, we have a set of ⁓ exercises. They're going to hear the exercises and be able to practice them in advance and then sing them in the MRI. And it's the combination of that person's awareness of their own body and what we're seeing both in the brain scans. You know, have the pictures of the brain all lit up in these different areas for different exercises. And what we're seeing in the dynamic fMRI, which is the whole sort of video of the entire vocal apparatus. speaker-1: So I know we talked about that just that's like what the process is but what what do need from them like they have to get to Boston and be there for how long? speaker-2: willing to be in Boston and sing in the MRI for, it might be 90 minutes, it might be shorter. How long? Between, on one time. It would be about five hours. It would be like a day. speaker-1: So they get to stay medicated. I wonder if there's any musicians out there that can, how do they reach you? They can contact you through email or who do they, who would they contact? speaker-2: So the email is simonian underscore lab at meei.harvard.edu. speaker-1: Okay, awesome. So tell us about your interview with Renee Fleming. speaker-2: Amazing and so generous got interested in in neuro arts and the plasticity of the brain and has funded I think our cohort in 25 was the second year that she's funded now as she's looking into the next group of research. It's amazing. speaker-1: That's awesome. Tell her we said thank you. mean, anytime like somebody, cause she does not have Parkinson's, right? So anytime somebody without Parkinson's that like looks to our group that is like, want to help. That's just, blows my mind. It's like, it's like the stuff like Melissa does with exercise. It's just like, you have no connection to it. But anyway, so why don't you talk to us about that information? speaker-2: So, Fleming is interested in this ⁓ plasticity of the brain, neuro-arts in general, and it's not necessarily just Parkinson's, but there have been a few Parkinson's projects. in addition to mine and Dr. Batticella, ⁓ David Leaventhal, who is part of the Dance for Parkinson at Mark Moros, he's doing a project looking at comparing dance to walking. speaker-1: Cool. We'll get you down. How did she make that connection with the neuroscience aspect of things? speaker-2: Yeah, it's very cool. ⁓ speaker-0: Yeah. speaker-2: She has ⁓ spoken in other interviews about how she went through a period of having real stage fright and then it developed into a, what do they call it, somatic pain or neurologic pain. speaker-1: What does that? Okay. speaker-2: Like if you have pain that's caused by a physical cause, sometimes the neurotransmitters and the messages to the brain can get stuck in a kind of feedback loop so that even after the physical injury is gone, you're still feeling the pain. And you have to deal with that by kind of retraining your brain. speaker-1: God, we've had, I feel like I've heard this so many times today, which is awesome that we're hearing the same thing over and over of you have to retrain your brain and the fact that it is possible. So how is the tool that you created, how is that, is that helping anybody? speaker-2: like. So you're talking about my gestural controllers? Okay. I call this the expanded vocal improvising instrument. I, uh, and I was kind of a tip of the hat to a wonderful composer who was a mentor for me. And I worked a lot with her, Pauline Oliveros, and she worked with a processing system that she called the expanded instrument system. So I've been using it in concert and, uh, both solo works, uh, chamber, things where I'm improvising with it. ⁓ I taught it to two other singers and used it in an opera that I wrote and performed in Oslo. And I'm working on another opera that's going to be done in Vienna in September and I'm teaching another singer to use it. speaker-1: Do you need us to come? I mean, that sounds like it sounds like a great trip that we should just we need to be there. Okay, be there. So what's interesting is I know, like from a singing like a singing standpoint that is huge because we talk about our vocals. But do you work or talk to other musicians? speaker-2: September 17th. speaker-1: And I don't know if you're connected with many Parkinson's people living with Parkinson's, but like I've heard it was a guest that we had on somewhat recently within 2025. And remember he said he started drumming, like playing the drums and he did that after he was diagnosed, but he was like, like, and it helps his tremor. So do you find like, I'm assuming with all the things that you're doing, it's helping. things and that's you're learning about. You're trying to figure out like what is this helping with. ⁓ But do you ever hear that or? speaker-2: I was really, I was thinking I want to take drumming lessons too. Really? You know, yeah, because I could feel that I didn't have the rhythm anymore that was even in my hands. when I was playing piano, my scales were not even. I thought maybe I could do it with really big movements. Yes? No, I haven't. But ⁓ it's still on my list. I have a lot of things that I got going on. speaker-1: You haven't tried it. Well, you can do that and then get back to us and let us know how it helps because we actually did that in one of our exercise classes is we had like a drumming. We got one of those like big exercise balls and just had like sticks and we would like drum. I mean, it was just fun for us, but it's like to actually do that, that drumming. speaker-2: Yeah, yeah. Well, in some ways, the rings are a kind of a, they're more zen. They're not like huge movements, or they can be, but usually I'm using it kind of zen. And what I was discovering is that if I started having a tremor, sometimes I could just switch my hand a little bit into a different position and it would kind of settle down. speaker-1: I do that a lot. if, did you ever notice that? if you're shaking or like I do it like with my feet and it's like, if I'm shaking, it's like, I'll just, I move and I'll like switch positions or whatever. And it might last only like a couple of seconds if I'm, if I'm off, but if I'm on, I swear it's like, sometimes I feel like I tremor because it's like out of habit. And then if I change positions when I'm on and then I get back to normal, do you ever feel like that? No. speaker-0: I have no but I'm not trimmered down. speaker-1: You're stiff. You have tremor though, right? said earlier. I do. speaker-2: I do. It's mostly in my hand, but I have a lot of stiffness. have the ⁓ difficulty with my articulation in my face. speaker-1: But you have great, I mean, obviously, you know, being a singer and musician, but it's like you have great voice articulation. And isn't that supposed to help with your facial? speaker-2: Yeah, I'm grateful for my training definitely, but I did notice that I my voice ⁓ My singing was getting quieter and my talking was getting quieter before I was diagnosed I didn't know what was happening Yeah, why am I talking quiet and one duo partner that I had that know knew really knows me for a long time She said to me what's up with your face? So she saw it before I was diagnosed very, very subtle. speaker-1: That's what I say to Brian, what's up with your face? speaker-0: Nobody noticed mine before saying this to us. speaker-1: It's just grouchy. Why are you being so mean? I was gonna say though, like not knowing you obviously, but like I would not think that of your like your facial expression. I think it's really good and that's- work on it. Yeah, no, but that's good. Yeah, that's what we just got done talking to like I said to a speech pathologist and we got we're gonna get hopefully Brian looking at that and it's something you know, we're all gonna have to do because she's like What'd she say? Like 90 % of us living with Parkinson's will deal with swallowing issues, speech issues. And I'm like, okay, so that's kind of scary. So you're a step ahead. speaker-2: And I really would love to find ways to have some of these singing exercises maybe incorporated in just normal speech things. Yeah. Here's really funny thing. speaker-0: It was a huge... speaker-1: Right? You're gonna... ⁓ yeah, what was the... speaker-2: Give huge cans of Coca-Cola speaker-0: Get used to candy Coca-Cola speaker-2: ⁓ Are you? ⁓ speaker-1: So that's what I should ask. So what is your hope? What is your expectation that you'd love to see come from all of the work that you're doing on this right now? speaker-2: a lot of back for the tongue. would love to see if my hunches about what's going on in the vocal apparatus are correct. if there's some commonality between, and of course that's hard because everybody's so individual with Parkinson's anyway, and as a singer anyway. But I have talked to other singers, like the one in California and one here in the Netherlands, who also have said, yeah, I felt it with my palate, and I felt it with my articulation, I'm not breathing as fully. So just to get more knowledge. really from singers who know their bodies and then I personally have a goal that I'd like to see if some of the exercises that I feel have really helped me might be incorporated in things and there's some funny ones like I'm gonna make some weird sounds. love it. There's if you breathe in like you're kind of snoring Right? You can feel the power flipping. And I could feel where it wasn't as much on the left side and then I could direct the air there. speaker-1: So you can't really, hang on, let me try. Yeah, because I don't feel it on the right as much. But how do you direct it there? speaker-2: You just think about it and you're going to pull the air on that side. speaker-1: Try it! We're all do- speaker-0: I'm here all night. speaker-2: Ha ha ha. speaker-1: That is really interesting like isn't it yeah, I do I do I don't feel it as much over here And I felt it a lot over here, which so I'm right side It's interesting. Yeah, but it's like to try. I mean it's it hang on. want to do one more time. Sorry wait I Get so I like trying or yeah, but I get I get stuck trying to get it over here speaker-2: Yeah. speaker-1: And I don't have a lot of breath capacity apparently. I can't breathe that long. speaker-0: Yeah, we're not as talented as... speaker-1: So are you gonna look at is this I mean obviously I know why you're looking at people that don't have Parkinson's that sing and then people with Parkinson's that sing but what about people without Parkinson's or with Parkinson's that don't sing does that do anything you speaker-2: You can still do all that kind of exercises, right? And I was warming up the Parkinson choir at Juilliard. ⁓ Choir? But like there's dance for Petey, sing for Petey. It was a choir. Juilliard in New York. Yeah, so when I would go, when I was in New York, I would go to the Sundays and then sometimes I'd be asked to be the one to speaker-1: At where? speaker-2: warm up the choir. And people in the choir were saying, I really feel different when you warm me up, you know, get me really breathing and then long breaths out. there's a lot of choir directors that are working with Parkinson's choirs who do that, who do regular exercises, of classical voice exercises. But then if... If there's this thing about the unevenness with the palette, here's another funny one. If I go... That's a number, like a B. speaker-1: Yeah, we do any of this. It's fun. speaker-2: ⁓ That's it. That's it. Very good. Now if you did it and you ⁓ hold your lips in the middle. That's a really weird sound. speaker-0: Something should be coming out the other end. speaker-2: But you can feel the difference between one side and the other side. And you can hold like the whole half of one side and the whole half of the other side and feel the difference. So there's these very kind of funky exercises that might be interesting to try to address the asymmetry that's going on. speaker-0: Yeah, you're right. speaker-1: So at our gym, PD Next Steps in Ohio, we have a music teacher that comes on Fridays. It's kind of like, I feel like sometimes we're in kindergarten, it's like, we have this on Fridays and this on Tuesdays, but she comes on Fridays and she does these exercises. And then she gets us to sing after. you do feel the difference, but I remember she would, the things that she was having us do, I'm like, this is really weird, but it's. most of it is just like what you just did. It's like, you know, the snoring and it's trying to get your vocal cords enacted, your tongue, like she'll make us stick out our tongue and like move it in different ways and all kinds of stuff. So this is. speaker-0: Make sense to you now that you're beli- speaker-1: I know I always was but it's like I really think that this stuff is important for people to know it's like this is you know, it's a whole movement muscle situation that you have to work at and it's like and If you have it, it's like you might as well take the time to learn to understand like what you can do to make things better. So speaker-2: And if it's the muscles that are connected to swallowing... speaker-1: Absolutely. was telling Brian that's my important. That is my scary. That is the scariest thing to me. I was choking. So this is this was great. And I'm going to do it again. speaker-0: I can't wait to eat off of you. speaker-1: You're not even doing anything. speaker-0: Aim on my right. speaker-2: you speaker-1: So is there anything out there that our viewers would like to see that you can share with us that Steve can add as a QR code or on the website? ⁓ What are the titles of those? What are some things that they can see? speaker-2: I have a Vimeo page and there is a short thing that I call Evy and Me that I've been ⁓ sending around. It shows me working with the controllers and it's a fun piece. there's other, if you go to the Vimeo there's other things. Some of the videos you can actually see my tremor if you look quiet. speaker-1: carefully. Yeah. Very cool. speaker-2: Yeah, but it's me having fun playing around with this instrument. ⁓ speaker-1: Awesome. And then we'll play around with our lips. I don't know why that is so much fun to do. ⁓ speaker-2: Yeah, good. Because you feel like a kid. speaker-1: No, I think that's exactly right. That's why I'm so surprised you're not doing it even more. You're like the kid of the group and you love to do these things. But like you said, you already snore at night, so try it again. Yeah, mine is so much louder. speaker-0: Yeah, I mean, I practice. Yeah, we do next podcast. speaker-1: All right, we'll do it again. Well, Kristen, thank you so much for joining us. This was such a pleasure. I know it's late for you right now, so we'll let you go. But thank you very much for. speaker-2: Thank you. Pleasure's mine. And you guys do such great work. I'm super fan. speaker-1: Thank you. Well, everybody that comes on, I love to say like you are helping changing the way people think about Parkinson's because you are everybody. There's probably musicians out there that are watching and those that aren't will start to know the importance of using your vocal cords again, not just for singing and for speech, but for swallowing and many other things. So thank you. Yep. speaker-2: Yeah, thank you. speaker-1: Well, in our last 30 seconds, will leave you all with this. Do some fun exercises this evening. You can snore, you can blow through your lips. And hopefully when we take a look at a couple of things that Kristin has sent us and we check out her Vimeo page, there's other things that we can learn about. But definitely don't forget about your voice. It is very important, important not just to talk to people, but for your swallowing situations, your swallowing issues that you may have. So with that, we will see you guys all next time. Alright, I seriously I want to do it again. speaker-0: you speaker-2: It's so good in first. speaker-1: really don't have that much breath. Like, I'm sucking in and I can't breathe. speaker-2: is you have to breathe out first. You have to get rid of the breath you have and then breathe in. speaker-1: Okay, so how much is your- It is four o'clock for us. Oh, but she's like, nighttime. I know, thank you so much. This was so much fun. speaker-2: That is? Yeah. speaker-0: I know I didn't get a nap like you speaker-1: Yeah, thank you so much. Have a great night. Have a great weekend.