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Episode 38: Mandolen Mull - Dystonia
38 Plays6 months ago
Mandolen Mull suffers from Crohn's Disease and Dystonia. This episode is focused on the latter, which is characterized by muscular spasm and abnormal posture, usually from a neurological origin. In Mandolen's case, it could have resulted in reduced mobility and difficulty to speak, but she was able to recover almost fully by going through various therapies. Her condition is exacerbated by stress, and she constantly has to manage her stress levels to keep control of her body. In this interview, Mandolen shares how she was able to leverage her brain plasticity to recreate functional neural pathways.
The song that Madolen chose is What a wonderful world by Louis Armstrong.
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Transcript
Introduction to 'On One Condition' and Guest Mandeline Moore
00:00:00
Speaker
Hi, I'm Sylvain Bertolo and you're listening to On One Condition, a podcast to raise awareness about health conditions by listening to people who leave them every day. My guest today is Mandeline Moore and we're going to talk about dystonia. Hi Mandeline, thank you for joining me. Thank you so much for having me. I really appreciate it. Thank you for the work that you do here.
00:00:23
Speaker
Well, my pleasure. It wouldn't work very well without people like you, so thank you as well.
The Uplifting Power of Music in Coping with Dystonia
00:00:30
Speaker
I love starting with a song, so I'd love to hear what song you chose and why you chose that song.
00:00:37
Speaker
So the song that no matter what kind of mood I'm in always puts me in a good mood is Louis Armstrong's What a Wonderful World. I can hear that song and it just immediately lifts my spirits. It realigns me back to mandolin. You know, it allows me to just kind of feel at peace. I'm joyous and
00:01:07
Speaker
you know, marvel at the world that we live in. And it's incredible how a song can do that. I love music. I always play music in my home. But that song in particular is just such an amazing touchstone that regardless of what's going on in life, it's always there.
00:01:29
Speaker
Yeah, I fully agree. And what I love about it is that it's about enjoying nature and looking outside your window and thinking, well, yeah, it's actually very, very nice and we're lucky to be here. So yeah, I don't need to approve songs, but I approve of this one. And I'm glad
Journey to Diagnosis: From Symptoms to Dystonia
00:01:52
Speaker
you chose it. Thank you.
00:01:53
Speaker
So tell us a bit more about dystonia, maybe starting when you realized that you were affected. Yes. So I was actually in the middle of my doctoral program. I was getting a PhD and I'm
00:02:13
Speaker
I had had a very heavy workload, both in my day-to-day job and then my doctoral program was pretty rigorous and I had a long commute and all these kinds of things. And I had started to notice one day that my hand was shaking.
00:02:32
Speaker
And I thought maybe I was just drinking too much coffee. I'm trying to keep up with everything. And so I really dismissed that going on. And then I had people start talking about they were noticing that I was bumping into walls.
00:02:55
Speaker
And again, I just thought I was tired. They noticed I was skipping words when I talked or when I wrote, I would just omit words. And then they started to notice that my right leg was dragging.
00:03:11
Speaker
And one day I was teaching, I was a professor at the time, and I started to have a spasm in my hand and it just wouldn't go away for several hours. And so again, all of these kind of really strange things were happening, but I wasn't
00:03:31
Speaker
I wasn't alarmed to that degree, but I did stop wearing my high heels. I'm four foot 11. And so I thought maybe people noticing me walking into walls, like these kinds of things, maybe I shouldn't wear high heels. And I went to see my physician and he said, he opened the door and before I even said a word, he said, you're not wearing high heels. What's wrong?
00:03:59
Speaker
And I started to tell him about these kind of random symptoms. And he immediately picked up the phone and called downstairs at the clinic to get me in with a neurologist because I have Crohn's disease as well. And so the concern at the time was that I might have multiple sclerosis.
00:04:21
Speaker
And because typically with Crohn's or other autoimmune, it's pretty common to get a secondary autoimmune. And so that was the prevailing fear at first. But then one day I went into work, and a colleague asked me a question. And I thought I was responding. And I was just as shocked as they were when I realized I couldn't talk correctly.
00:04:50
Speaker
I had words in my head, but as I started to try to talk, my jaw wouldn't coordinate.
00:04:57
Speaker
My tongue felt curled in the top of my mouth. I was stuttering. I was struggling to get words out. And I was as alarmed as all my colleagues who thought I was having a stroke. And so I went to the doctor. We did all kinds of tests. And what it was determined was that I have something called acquired torsion dystonia.
00:05:23
Speaker
So about 1% of our population gets dystonia. About 1% of that 1% get acquired torsion. And what the thought is, is perhaps it was, we'll never know for sure, but perhaps maybe one of my Crohn's medications, some type of reaction that I had that caused damage to my basal ganglia in my brain.
00:05:48
Speaker
and started to rewire my brain to give me these strange involuntary muscle spasms. So some are fast where I was exhibiting that with more quick spasms or stuttering. Some are more fixed where I can have more postured, you know, kind of frozen in place muscle contractions. Okay. It must have been scary.
00:06:19
Speaker
When you think stroke or MS, when you can't really say the words you want to say, that must really be scary. How did you feel? And even when you heard that the diagnosis, how did you feel? Yeah, so it was terrifying, to be honest with you. Having had weird symptoms before getting diagnosed with Crohn's,
00:06:48
Speaker
Yeah, I'd had it for a decade. So there was a part of me that kind of felt like I've dealt with, you know, medical issues before I can handle this. But, you know, there was a period of months while we were doing spinal taps.
00:07:06
Speaker
and all kinds of things to try to look and determine what exactly was going on. And, you know, without answers, meanwhile, I was having symptoms of muscle spasms. One day my foot completely flattened out, my toes did, and started to invert.
00:07:30
Speaker
And that lasted for hours and it felt like continual Charlie horses throughout my body. And so to have this unpredictability of what was going on and not know what was about to be the diagnosis, what was my prognosis.
00:07:53
Speaker
So it was terrifying. They were testing me for heavy metal poisoning, copper accumulation in my brain. I mean, it was these wild types of things that I was being diagnosed with or being considered for a potential diagnosis. And with a movement disorder specialist, they're a very specialized form of neurologist.
00:08:22
Speaker
So their schedules are quite booked so i had doctors advocating to me calling you know back channels trying to get me help because traditional neurologists were saying.
00:08:38
Speaker
We, this isn't, it's not MS, but we don't know what it is. We think it's some type of neurodegenerative disease, but it's beyond our special, you know, our subspecialty. And so they needed me to get with a more specialized specialist, if that makes sense. And so it took a while. And in the interim, the symptoms were scary and
00:09:07
Speaker
I was continuing to get a PhD. So, so, yeah, it was it was quite a journey, to say the least.
00:09:18
Speaker
How long did it take to get the diagnosis and then start doing something about it? So the first symptoms that I recall was the hand tremors. And that started in July. And then September was when the speech got affected.
00:09:39
Speaker
And then I didn't actually get diagnosed until late October. And at that time, I was told that I would, my prognosis was bleak, that I would likely be severely disabled within the next five years, that there was no one size fits all type medication, or treatment for this. And that, you know, it
00:10:04
Speaker
I, you know, the prognosis was that I would not be able to walk or talk or feed myself and that if I had any hope of making progress, it would be within the first year, but that it was all trial and error. It was all going to be experimental type treatments to try to assist me because I remember my, my movement disorder specialist telling me, mandolin, if, if you had
00:10:33
Speaker
Parkinson's or if you had MS, we have plans for that. We have treatment plans for what that is. With what you've got,
00:10:44
Speaker
We don't have enough how it works and how we can support people with it. We don't have enough research on it. We don't have a standard protocol for treatment. So we're going to have to kind of figure it out as we go. And I'm
00:11:05
Speaker
That, too, was pretty scary, was to, to realize that we didn't really have some kind of like, I mean, we, we were using a lot of medications off label. You know, she had told me, I think within the next 5 to 10 years, we'll know more about the
00:11:23
Speaker
brain-gut connection, and wondering how much of this had been, you know, exacerbated by microbes or things like that. But we were in really uncharted territory, to say the least.
00:11:38
Speaker
Yeah, but it looks like you're not, from what I can see, at least not overly affected by it now. So did you find something?
Managing Dystonia: Treatments and Life Changes
00:11:50
Speaker
And what was that journey like to find something to counteract? Yeah, so this summer, or this fall, I guess will be eight years since they gave me the five-year prognosis. And
00:12:05
Speaker
Wow i know i know it's it's incredible so it's yes so it took us i would say about six months of trying different we so we did a multi multi variant approach here.
00:12:21
Speaker
where one was, the goal was to calm down the neural activity in my brain. Because of the damage, with dystonia, you're dealing with a lot of hyperactivity of neural synapses trying to figure out how to work. So you're getting the involuntary muscle spasms as a result of that. So the goal was to calm down my brain.
00:12:48
Speaker
So we were trying different like epilepsy drugs, things that work on the central nervous system, medications, pretty heavy duty medications for someone getting a PhD and someone who tends to be pretty hyperactive and I like being around people and all these kinds of things. And at the time I couldn't drive.
00:13:12
Speaker
So I was away from people. I was having to use medical leave while I was going to physical therapy, occupational therapy, speech therapy. We were doing neurofeedback to try to help retrain my brain. I was doing cognitive behavior therapy to work with stress mitigation. So anything that was going to kind of disrupt.
00:13:39
Speaker
my overactive nervous system was going to keep reinforcing those new, aberrant neural pathways. So the goal was to try to re-correct all of that using the brain plasticity. So I banned the news.
00:13:57
Speaker
from my home. I couldn't watch the news. Sometimes I couldn't watch my beloved baseball team because I needed positivity in my life. I listened a lot to What a Wonderful World. I watched a lot of Hallmark movies. And so we did a lot of those types of things, figuring out how I could essentially calm down my system, get it back to a safe place.
00:14:26
Speaker
I'm so using all of these different strategies. So today I'm on two different medications that are usually used for people with epilepsy in Parkinson's. I'm on another medication that is often used for individuals that have had like a spinal cord injury or something like that. So again, to calm down that central nervous system.
00:14:52
Speaker
And then I get Botox injections to help with some of those fixed muscular spasms. So I get exacerbations at times. Maya got a really weird accent out of it. Nobody can ever place it. And it's kind of difficult to tell people.
00:15:13
Speaker
Yeah, I have brain damage, but I'm fine. When they ask you like, oh, where's your accent from? So, um, yeah, so it's a little bit awkward there, but not the worst side effects, considering the prognosis that I was given. So yeah.
00:15:30
Speaker
So are you saying that your accent has changed? Correct. So I am actually from Texas in the States. So I say y'all a lot. And yeah, and sometimes my accent can get usually when I'm much more stressed out, it'll get really thick. I'm San Dimost Australian. Other times it sounds British. I'm Irish.
00:15:57
Speaker
If I've had an adult beverage and my brain has calmed down a bit, I usually sound a bit more Texan or American. So it's pretty interesting.
00:16:11
Speaker
How does it... Sorry, I'm gonna have to ask a question on that. Your voice, in a way, is your identity. Not the only identity you have, but that's how people recognize you on the phone.
00:16:28
Speaker
And even for yourself, like your voice has always been here, so how does it feel to change accent and not know what your accent is going to be tomorrow? It's day to day, or even throughout the day, hour to hour. So one of the, because I had a long commute when I was able to start driving again, I'm
00:16:50
Speaker
I, the part of my therapy was singing
Identity and Career Challenges Due to Dystonia
00:16:53
Speaker
because the parts of our brain that is responsible for singing is different than the part that is responsible for talking. So they had me singing all the time to try to help.
00:17:06
Speaker
with the muscles because probably the most frustrating thing for me with the dystonia in the beginning was I could not speak at the pace in which I want to speak. And so for a long time I sounded hearing impaired because of the way that the palate was frozen, the muscles there were affected.
00:17:32
Speaker
And so not being able to speak and get words out as quickly as I wanted to get them out was unbelievably frustrating. And all of my friends could hear me struggling to talk and people would be like, oh, she's, you know, and so then that would make it worse, right? Because I'd get frustrated and then, you know, it would just kind of exacerbate. So it is today.
00:18:02
Speaker
You know, it's it's an awkward and strange thing for me because I make my career as a professor, as a leadership consultant. So I talk all the time. And, you know, it's usually the first thing people ask me, oh, where are you from? And I'm like, Texas.
00:18:20
Speaker
And they're like, no, you're not. And then they'll ask about the accent or something. And so, you know, again, it's kind of that awkwardness. And I gave a talk in December to a group of people and I had talked about Dystonia and having to learn to talk again.
00:18:39
Speaker
And in addition to walking again and all of that, but one of the on the after the after workshop survey, somebody had written, I got distracted by her multiple accent.
00:18:54
Speaker
And it hurt my heart so badly. And my first initial response was shame and embarrassment. And then I started to think, eh, all things considered, I'm OK with that. When I first was going through this, so my students were watching this in real time. My students had heard me one day
00:19:22
Speaker
sounding Texan in the next day, really struggling to communicate. And I was very self conscious of it. And I communicated to my students that they were not going to hurt my feelings if they let me know that they couldn't understand me, because I didn't want to hinder their development by my own inability to communicate.
00:19:50
Speaker
And I'm...
00:19:52
Speaker
Yeah. And there have been times where I've had setbacks, like where my dystonia can get exacerbated. And if people don't know I have it, all of a sudden, you know, my tongue feels fat. You know, like I start slurring my words pretty badly and I'm not as articulate as I want to be. And so if somebody's not aware that I have dystonia, they start to look at me kind of strangely and you can tell that they're thinking,
00:20:22
Speaker
again, is she having a stroke? Like, what's happening right now? And so it is, it's a very, it's, it's a, it's interesting in the sense that many people are fascinated by this strange accent that I have. And then other people can be, you know, annoyed by it to a degree, because it does vary.
00:20:48
Speaker
Yeah, and there is a stigma around slurring and not being able to talk. I was about to say properly, but actually that's like who knows what properly actually is, but like there's an expectation of how someone, especially in your job, expresses themselves.
00:21:11
Speaker
communicates and so on. And if you're not able to do that, I can imagine that reactions can be on a different scale depending on how people are open to others, I would say. Is that a correct assessment? Absolutely. And to think about it, there are times still, like right now, where my leg might curl in, my arm might curl out,
00:21:40
Speaker
I might start to have spasms in my hand, my arm. And if you think about this, you know, I've made jokes about this over the years. I'm like, Oh, one of these days, I'm going to get pulled over by a police officer, have this strange accent, you know, slurring words, because I'll get nervous or something.
00:22:01
Speaker
And then trying to walk and I just don't know, I was like, it'll be horrible, you know, and then I'm on these medications. But it's such an invisible illness to such a degree, right? That most people just hear a need accent and then, you know, something disruptive comes along and you just don't know when that's going to happen. So it's the unpredictability.
00:22:27
Speaker
of the dystonia that's probably the most challenging for me and for other people around me that I've noticed.
00:22:35
Speaker
Yeah. Well, you said earlier that you had to learn how to walk again. I did. So does that mean that it affected your mobility as well? Right, it did. So I'm essentially, from what I understand from my medical team, is that there's like two startled responses that our nervous system has. And one is kind of where we open up like a starfish and the other is where we fold inward.
00:23:04
Speaker
And my dystonia tends to fold inward. So my legs curl in, my arms will curl in. So you'll kind of see hunching and all of this kind of stuff. And so yeah, I walked with a cane for
00:23:21
Speaker
quite a bit of time and I did occupational therapy and physical therapy.
Becoming an Advocate and Example for Others
00:23:27
Speaker
The muscles in my legs still are pretty painful today so they curl inwards kind of around my shin bones.
00:23:39
Speaker
For the most part, I walk pretty well. People don't really notice it, except I had a friend whose family member had MS and she said, you walk like my mother did. And so it's interesting that people pick up, you know, can kind of see some things that I normally don't think a lot about anymore.
00:24:04
Speaker
But others do. I had a pharma student of mine who was having leg spasms and went to several doctors, kind of all of this, and she ended up getting diagnosed with functional dystonia.
00:24:20
Speaker
And I remember her telling me, Dr. Moore, I was a lot less afraid when the doctor gave me the diagnosis because I knew you had it and I knew how you handled it. And she's doing remarkably well as well. It's not to say she doesn't still have setbacks and things like that, but it's fascinating to me how I had never heard of dystonia.
00:24:47
Speaker
I had no idea anything about it. My medical team was still kind of figuring it out along with me. And it's something today that, yes, I live with and there's daily disruptions of it.
00:25:05
Speaker
But in terms of what the prognosis was, you know, we're completely miles away from that. So it's a very important thing we're looking at now is even the impact of the dystonia on the internal muscles. There's not a lot of research out there yet, but things like how it can affect, as I was saying, that curl in.
00:25:29
Speaker
I'm with some of my digestive issues that, you know, there's things that medical teams are looking at right now on if that's a possibility as well. And so it's a fascinating condition that
00:25:49
Speaker
We're still learning a lot about, quite a bit about, there's so many different types of dystonias out there. So there's some that are a bit more common, usually with like what they used to call like writer's cramp, or musicians kind of get, can get it. And it can be totally when they're only doing that action. So they don't live with it all the time. It's only when they go to like play a guitar or go to write.
00:26:19
Speaker
that they start to get a dystonic posture, whereas some of the rest of us are dealing with it pervasively. And I've gotten the chance to meet other people who had acquired torsion dystonia when they were young.
00:26:39
Speaker
and have lived with it most of their lives and have had severe impacts from it. And it's been in their caregivers. And so it's been interesting to learn how each one of ours is and understand why my doctor said, we just don't know, you know, how this will work. Yeah, yeah.
00:27:05
Speaker
You had a five-year prognosis to start with. What was that based on? Because you've just mentioned people who were diagnosed at a young age and who are still alive.
00:27:22
Speaker
So was it because they weren't sure it was dystonia or because of the way it was affecting you? So one of the, I think, most difficult things is that it takes a long time to actually get diagnosed with dystonia. One, because a lot of people haven't seen it, it's been misdiagnosed. And unfortunately, because of that kind of critical year period, while the brain is plastic and can do some pretty remarkable things to
00:27:50
Speaker
We're understanding a lot more about neuroplasticity today than we used to. Sadly, for many people who don't get diagnosed early on within that kind of year of the onset of their symptoms, they face a much graver challenge of rewiring those neural pathways that have fixed into the muscle spasms.
Stress, PTSD, and Their Impact on Dystonia
00:28:19
Speaker
The brain loses plasticity after one year. Yeah. As time goes on, the brain starts to entrench those neural pathways to say, hey, this is how this muscle should work now. And so once that gets more and more entrenched, it's harder to break the pattern. So that's why the medications were helpful for me, certainly.
00:28:46
Speaker
But the neurofeedback and like I said, trying to kind of calm my nervous system, all of those things were a multi-pronged strategy for us to try to allow my brain some flexibility to try to reroute it to go back to
00:29:06
Speaker
more healthy, less painful pathways that it could create where I could function with it better. So it was retraining my brain all over again. And so I talk about relearning to walk and talk. That's true, but those were actually kind of the outcomes. I had to rewire the neural pathways that had become disrupted from the damage.
00:29:37
Speaker
Yeah. And do you still need to be careful with the level of stress you're under? I do. Yeah. So sadly, my dystonia and Crohn's kind of feed off of each other. So, you know, when you've got inflammation going on into the body, the dystonia kind of shows up or if my dystonia gets worse and worse, my Crohn's kind of shows up and then I'm
00:30:05
Speaker
Because of those, I likely was at a greater predisposition. There's some studies out there, but I was in a really horrific car wreck about four years ago where I got hit by a distracted driver and rolled four times. And so now when I hear emergency sirens, I have PTSD from that and my dystonia reengages almost immediately.
00:30:31
Speaker
And it's that has been probably one of the hardest things for me to navigate because it's completely involuntary. And so, yeah, it's while it fortunately those are more episodic.
00:30:51
Speaker
They're extremely painful. I've watched or I've had it happen to me where other people have watched me, you know, like a siren comes by and I just can't, you know, help it. And I've heard other people exhale once the dystonic spasm passes, that it's almost like they could feel all that tension, all of that, you know, contortion of my muscles.
00:31:21
Speaker
you know, just watching it. And that's been, you know, something that, yeah, they kind of multilayer. So again, it's the hard to know, you know, did Crohn's disrupt my nervous system that eventually caused dystonia? Then did dystonia kind of make me more predisposed?
00:31:45
Speaker
Interesting things that we are finding out more and more today about the nervous system and the role that it plays, especially via that mind-gut access in our bodies. So yeah, I've been an interesting case.
The Role of Brain Plasticity and Self-Advocacy
00:32:01
Speaker
For the Mayo Clinic physicians, to say the least, I've learned how to try to stay apprised of research and learn to, you know, handle, become an advocate for myself as a patient, which is
00:32:21
Speaker
Now, I'm really good at being an advocate for other people, not always great at being one for myself and have learned to work with that as well. So today, like I said, I continue to take my medications, get the Botox injections. I do work, somatic work with my nervous system. I continue to do CBT therapy.
00:32:46
Speaker
I'm gastropsychology, I have a gastropsychologist that I work with. So all of these things kind of in, of course, neurodegenerative doctor, but, you know, they all kind of fit together, because as we know, what happens in one system in the body, you know, doesn't stay in that one system, it kind of, especially when we're talking about the brain. So, yeah, yeah, it's been an interesting journey.
00:33:17
Speaker
What I find fascinating listening to you is that I don't know if you were interested in physiology or the brain itself before it happened, but it sounds like you're actually quite interested in it and in
00:33:36
Speaker
Don't say enjoying the process of learning more about the brain, but it almost sounds like it's something that you find fascinating yourself. So that was one of the big things that when I started to, you know, as I said, I was getting my PhD in change, if you can imagine that.
00:33:59
Speaker
And so experiencing this massive change in my life.
00:34:10
Speaker
I didn't know, you know, again, I'd never heard of dystonia before. And because the doctors were trying to learn right alongside me and we didn't know how much more involvement in my past medical history could be contributing or might not. So it was just so much amorphous, you know, question marks hanging around everything that I really felt I had to be part of the team with my medical team.
00:34:40
Speaker
And fully aware that my PhD is not in a medical science field, but I wanted to learn as much as I could to try to give myself an opportunity. I firmly believe some of the challenges I faced in my life have been opportunities for stepping stones and not stumbling blocks.
00:35:06
Speaker
I had because I'd never heard of dystonia, I thought, how do I how do I use this as an opportunity so that maybe when somebody else gets diagnosed, they're not so afraid and to know that that happened for my student was such an affirmation. So I couldn't do those things if I didn't start to learn how to
00:35:32
Speaker
maybe help myself, but hopefully help others as well. And so, yeah, I've become fascinated really with all of the more that I've learned about
00:35:45
Speaker
you know, people, I've learned about biology, I've learned, the more I've learned about biology, I've learned about psychology and more about psychology, sociology, it's like everything, you know, everything starts to become this really intertwined way. And then the more I've started to learn how to help people, maybe they don't have dystonia, but maybe they're in the trenches in a different way. And
00:36:11
Speaker
you know, something I know or can do to help them navigate the medical system, be a patient advocate for themselves, et cetera. Maybe that's why I've gone through some of these things. So. Yeah. I love what you said about using it as stepping stones and not stumbling blocks. And that's a very lovely way to say it.
00:36:39
Speaker
For me, I've always been fascinated by the brain. I find it incredible. You mentioned plasticity several times and how the brain can adapt to so many things that's happened to it.
00:36:59
Speaker
Actually, I mean, you have some impact, like long-term impact, but still it seems like it's adapted extremely well to very challenging conditions. So I find it incredible. So I would be right there with you trying to learn more and more actually.
00:37:21
Speaker
It is. It's fascinating. And my doctor was right when she said, you know, she goes, we just don't know enough yet. She said, in the next five to 10 years, we'll know a lot more. And and we really have started to, like I said, there's a whole the whole field of gastropsychology is really looking into
00:37:43
Speaker
the impacts of our gut health on to our psychological health and vice versa. And again, that's that predisposition of things like trauma and how that could potentially impact us going forward in our nervous systems. So these interconnected things that
00:38:05
Speaker
You know, there were some studies about that earlier, but it's really starting to come to the forefront today. And yeah, the neuroplasticity of the brain, I think when you know that that exists and
Finding Peace and Conclusion
00:38:20
Speaker
you get told, you know, okay, so your basal ganglia is damaged and your brain's trying to figure out new ways to communicate with these muscles and it's just not doing it in the ways we want it to.
00:38:33
Speaker
That meant that we could figure out other ways to get it to communicate. And if that meant singing, if that meant these medications, you know, walking a little differently without high heels, all these different types of things, it meant that I could harness the power of the brain's agility.
00:38:58
Speaker
in a different way. So a roadblock came up in one area, but I was able to figure out other side routes to get there. So yeah, it's interesting because like I said, today I have this strange accent and a little bit of a funny walk.
00:39:17
Speaker
Um, and most people wouldn't think it wouldn't say, Oh, I bet she, she's suffered, you know, this, this health condition. Um, and that's all because of neuroplasticity, which is fascinating.
00:39:31
Speaker
Yeah, I've written a lot of notes for myself to go back to it because I think that takes us to my last question for today, which is one I love asking everyone. What is your happy place, a place where you feel at peace?
00:39:49
Speaker
So I have my haven in the woods. I'm out here, but I would say my grandparents front porch. It was a screened in front porch with some sleeping Yorkies all around it. And my grandfather and I would solve the world's problems. Let me tell you, if only the world would listen to us.
00:40:09
Speaker
But I believe you asked me what heaven looks like. And it is my nana and granddad's front porch looking out at peacocks. I'm and he and I solving the world with some sleeping Yorkies lying about. That was that's absolutely my happy place.
00:40:29
Speaker
I think I can picture it actually, but maybe I've seen so many, maybe not typical, maybe typical American front porches in films that, yeah, I think I can picture it. And yeah, I bet it was very nice. Thank you.
00:40:46
Speaker
Well, thank you so much, Mandeline. It's been extremely interesting and fascinating to hear how the brain can adapt the flexibility. One thing I've noted down is advocate for yourself and work with your medical team. I think it applies not just to dystonia, it applies to
00:41:14
Speaker
any health condition and it's such an important message to anyone who's affected by a health condition. So thanks a lot for sharing and for your time. Thank you so much for having me.