Finding New Ways to Move Forward with Justine Galloway

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters. And this is the Brain & Life Podcast.

Dr. Correa:
Katy, it's 2024. It seems like we're all listening to different podcasts about the New Year, and how to move forward into this new year together.

Dr. Peters:
Happy 2024. I'm ready for it. Year of the Dragon.

Dr. Correa:
Yeah. I'm not sure how much that's going to change specifically my outlook on things, but it's always fun to see from different cultures how they approach the new year. It's always interesting also to see the different kinds of activities people get into, and just the general feeling of starting anew and moving forward. What have you been starting your year with?

Dr. Peters:
I moved my Peloton to a different room so I could have a window, so I can ride it more. So you can see it's no longer in the background, just another cat bed. So the Peloton's in another room. I've signed up for some Pilates classes, and I'm continuing to work with my trainer. How about you?

Dr. Correa:
It's funny you mentioned Pilates. I joined my wife in some Pilates classes, seeing if that helps with managing and cross-training for some of the running. But I've committed to run the New York City Half-Marathon this year, and fundraise for the Epilepsy Foundation and the services they provide for the community. So that just puts something on the calendar so I can look forward and start training, and moving towards that.

Dr. Peters:
How do you train? I know that New York had a bit of a cold spell.

Dr. Correa:
It's really just about the appropriate layering for your body temperature change that's going to happen with that activity. So if you're walking, you might put on more, but if you're running, it really depends on the temperature and the kind of weather that's outside. You might wear things to block the wind or a few little extra layers. But I actually find that getting outdoors some each day, doing activity, getting that breath of fresh air helps me adjust to the temperature changes around the year.
So imagine the challenges people might encounter with just getting outdoors this season, but thinking of different levels of challenges that can interrupt activities you love, and derailing things even with unexpected pain and falls. Our guest today went from training at a high level for triathlons and long-distance running to searching for an answer about abnormal movements, muscle pain, and falls. She shares with us this experience, searching for an answer, and some about her father's own journey with running and living with his Parkinson's disease.

Dr. Peters:
I can't wait to hear about that, especially given the movement challenges that can be seen with Parkinson's disease. I know that exercise is important for those patients, but just to have someone be an advocate, even if they don't have the diagnosis, to promote exercise for that group is so important.

Dr. Correa:
Yeah, I hope everyone enjoys the episode, and maybe even takes this episode out with them on their walks or a jog today.
Welcome back to the Brain & Life Podcast. And today, I'm joined by Justine Galloway. She's a longtime amateur distance runner and triathlete that has been impacted by neurologic disorders in many different ways. Throughout her life, her father lived with Parkinson's disease, and yet he regularly ran and trained for marathons into his later life. After running several marathons herself, Justine's love for movement and running was derailed by a condition called dystonia. After spending a few years getting answers and therapy for the dystonia, she transformed this into an opportunity to set new goals and then completing multiple half-marathons and full marathons backwards. Wait, yes, you heard me right. Backwards. And then completing a Guinness Book World Record for fastest half-marathon backwards. Justine, thank you so much for joining us and sharing your experience with us today.

Justine Galloway:
Thank you so much for having me. It's a pleasure to be on your show.

Dr. Correa:
And we're here both today, recording the day after the New York City Marathon. Now I wanted to go back and start with your father. What would you share as a memory of your father before his Parkinson's disease, really, that time together?

Justine Galloway:
So I was very young when he got Parkinson's. I was about six or seven, but I didn't realize it until I was older. But before that, I remember my father being a runner. He would come home from work, and he would go for a run. He was training for the New York City Marathon. He did that several times. And so I remember him going for his long runs. And he would always come back to our porch. We lived in Teaneck, New Jersey, and I would wait for him to come back. And as soon as he came back, I would run around the block with him for his cool-down. And almost all my memories, all the really good memories, are of us running together.

Dr. Correa:
How do you think, or do you know, his perspective about running and movement changed when it came to his Parkinson's diagnosis?

Justine Galloway:
My father actually continued to run with Parkinson's, and so he got Parkinson's in the mid-to-late 80s. And I think back then the diagnosis wasn't great. I mean, people now box, run, continue to be active with Parkinson's. And back then, that wasn't as common. But my dad continued to run. In fact, his last marathon was Marine Corps Marathon in 1990. But after he completed it, he ended up in the hospital for a week when he got home. And then that was, from my understanding, his last marathon that he ran forward.

Dr. Correa:
And I would encourage our listeners, we've had several episodes about Parkinson's and living with Parkinson's disease, with many different guests, and including an episode talking about exercise and Parkinson's with Jimmy Choi. So please go back and check those episodes out if you want to learn some more about Parkinson's. But I want to get to Justine's story. So from your dad's example of persistence, what did you incorporate into your own decisions to run in the future?

Justine Galloway:
So I think having my dad in his 40s have movement been taken away from him, it made me realize how fortunate I was to move in my daily life, and it made me realize to not ever take that for granted. So as he continued to get sicker with Parkinson's or be unable to move with Parkinson's, I continued my running career. I was running at Rutgers while he was getting deep brain stimulation. So I took my ability to move as just a precious gift. And I know he also liked hearing about it. He loves the stories of us running Boston and running New York. And I think one of the things with Parkinson's, and if you have Parkinson's, you know this, is your mind is with you. So when he would be in hospitals and people would be like, "Oh, my son won in Boston"... Everyone's son won in Boston.... My dad knew how our running was going, and was a big part of cheering us on, whether it was at a race or in a hospital. I knew he was always cheering me on.

Dr. Correa:
What changed for you in 2011? Because you had now been bitten by the running bug and the marathon bug, and continued your work, but in 2011, things changed a little bit in how you were moving and how you were training.

Justine Galloway:
In 2010, my father passed away, and we donated his brain to Columbia Presbyterian. And I found even a bigger connection to running, because on every run, I felt like I was connecting to him somehow. In April, the year after, I was running at Boston, and I went on the starting line of Boston. And I had injuries, like all runners do. I got to mile 18, and I went into the medic tent. Something was off. They took my blood and then told me to continue running. But a little after that, I started being unable to run. I would run, but my left leg wouldn't come down. I went from running seven to eight-minute miles to barely 11, and dragging my left leg.
I started to have problems walking, and I wasn't able to walk from my car to the grocery store without crying at the age of 31, which that's not what you want. And so I was going into PT, and I was trying to work on my running. And every time they would have me run forward on the treadmill, I would basically cry, because it felt so difficult. And then he would have me run backwards on the treadmill, and that would be fine. And run sideways on the treadmill, and that would be fine. But running forward on the treadmill seemed extremely difficult.

Dr. Correa:
Let's go back and understand a little bit more how it was, going through the journey of figuring out what it was. You were seeing the therapist. I think many runners end up working along with a physical therapist pretty regularly. Did you go and see them first, or when is it that you really felt like you needed to see a doctor?

Justine Galloway:
I knew as soon as it was starting to happen, I needed to see a doctor. I did think, "Maybe it's my knee. Maybe it's my hip." But this wasn't bursitis. This wasn't runner's knee. This wasn't anything I've ever experienced. Very few people believed me. I got told to see a psychologist. I went to someone who put needles that were bigger than spinal tap needles into every single one of my muscles. And I had to walk from his office with a cane to the subway stop. I basically got told every diagnosis there could be. And then I started going to neurologists more often, and I got told MS again by a few. And I completely understand. It's not Parkinson's. I now know it's not MS. To say I can't run is, in the scheme of things, maybe not that great a big deal. But to someone who's a runner and it's something they connect with, it was very hard for me to understand.

Dr. Correa:
And the times it was even just affecting your walking. It's not just like it was just one activity. And it sounds like along this pathway, there were so many other very concerning things that were brought up and discussed. That some people said that maybe you had multiple sclerosis, and probably had to get all the tests related to that. You also mentioned that some of the doctors told you that maybe you had Parkinson's. What was it like hearing that, knowing what your father had gone through?

Justine Galloway:
It's interesting. I had to bring my family into some of the doctor's office, because I felt like no one was hearing me. And so one of the things the doctor said was early-onset Parkinson's. And I remember, I think it was dopamine that they wanted me to try. And I could see, or at least I think my mom was completely against it because my dad, since I was six, has been on every single drug that Parkinson's people were given. And again, Parkinson's, at this point, there is no cure. You live with it for the rest of your life. And I think I always thought I was going to run until my 80s or 90s. And to hear that in my early 30s, I wouldn't be able to run again, and possibly walk, was really hard to hear.

Dr. Correa:
I can understand that. And I think it's just an important aspect, especially when you have a family member who lives with a condition, and then you start to experience your own challenges with health and movement. It puts your own life and function into perspective. And then when you started to see the doctors who brought up the ideas of other types of movement disorders, maybe less common ones, particularly like dystonia, how did that come about, and how did you feel like that ended up fitting in with what you understood what was going on?

Justine Galloway:
As my walking got better, the idea that I had MS decreased. They didn't think it was MS anymore. In New Jersey, I think it was JFK Hospital, there was a resident, and he was working with the chief of neurologists at the time. And he was one of the people who said, "Maybe it's early-onset Parkinson's or dyskinesia." And so I started researching. I'm like, "Runners and dyskinesia." And then I found an article on focal dystonia that was maybe published in 1990. I can't exactly remember where. And I brought it into him, and I was like, "Is this something?"
And he showed it to the neurologist, and he's like, "Yes, this is what you have." And so it took me bringing it in, but then he's like, "This is what you have." And then he was researching it. And he's like, "Here's what I found on it. This is, I think, what you have."

Dr. Correa:
So runner's dystonia is a very uncommon condition, and you described basically how it came up, in effect, almost. So you found the connection between your running and the different types of symptoms you were with it, and brought that in. And I think both that example of answering some of the questions that you have and bringing those in for discussion with your doctor is excellent. And as you described, also bringing a family member in who you can discuss ahead of time the questions that you have, and think through them and come into the office prepared in that way, I think, can always be very helpful. Because in the moment, when you're in the office, it can be overwhelming sometimes for yourself, to make sure you have all your questions answered.

Justine Galloway:
I think you start to second-guess yourself. And you're like, "Well, do I really have this? Maybe I'm fine. Maybe it's nothing. Maybe I just should try running again." I second-guessed myself a lot, going through this, because especially when it's uncommon, there isn't a mound of history to back you up on what you're thinking.

Dr. Correa:
Once you started to have and be armed with more information about your diagnosis and the runner's dystonia, and how that affected you, how did it change your perspective of yourself and your movement and your activities?

Justine Galloway:
So I think for me, and again, I think everyone's different, I think because my dad was in and out of hospitals at six, for me, once I knew what I had and I had a name to put with it, I wanted to be a bit done with the doctors. I wanted to move on from it, because if for some reason this is Parkinson's, if for some reason it turns into Parkinson's, I don't want to have that in the back of my mind. I want to live for today. And so at the time, once I had my diagnosis, for me, and walking was becoming easier. I wanted to bike and I wanted to swim, and I wanted to move forward, but it helped me to see that running's not as much as it feels like it's everything to me and the only way I can move forward. There are so many other ways I can move forward.

Dr. Correa:
So you took those lessons of persistence that you learned from your father, and you turned them and dove in fully into the lessons you learned from your own running and marathon and exercise training. And just dedicated yourself to the management and the treatment course with the rehab, which is the movement itself.

Justine Galloway:
Exactly.

Dr. Correa:
And this is the stage where then you started really working through with your physical therapist, and exploring what were the best ways that you could move?

Justine Galloway:
I worked with my physical therapist, I think, mainly to figure out how to walk again, because the walking part was really hard for me. And he would have me run, but for the most part, if it was anything longer than 800 meters, I would swim and bike, because it was just so difficult. Once I was able to walk again and I moved to California, I just started running backwards on my own. And I've been able to do that for quite some time now.

Dr. Correa:
Let's go back to that. Because even if you did some running backwards and felt like, oh, you could get to that point of just really enjoying it and losing yourself in it, I think a lot of people might still wonder, why, then, did you set goals to do much longer distances and run whole races, all backwards?

Justine Galloway:
I ran in college. I ran in my 20s. I am competitive by nature, and I want to push myself. So when I started running backwards, it was just two years later after I swimmed and biked, it was just for fun. And then when I met that other person who had dystonia as well, she had records on her fridge, short distance, because she was a short-to-mid-distance runner. And so when I saw her records, I'm like, "What is that?"
And she said, "Oh, it's backwards running."
And I'm like, "Huh."
So when I started running, I would run for two miles. And I'm like, "I could go longer." Initially, I was running on sand, and I would fall all the time. Really bad idea to run backwards on sand, but easier when you fall. And I just felt good. And then I kept on running. And then just for jokes, I looked at what a Guinness World Record was for a half-marathon. And I'm like, "Oh, okay. I almost think I could do it." At the time it was a 2:49. And I was like, "I could do this." And so I set out for the Guinness World Record.
I broke the record. And honestly, it was so cool, because my brother and sister running with me, and my dad being a runner, it felt like that was all meant to happen. We were all supposed to run together. And I broke the world record then. And so as crazy as it may seem, this year, I'm thinking of potentially doing a Half-Ironman. I'm not committing to running the whole half-marathon backwards. I'm committing to finishing it, and hopefully in time. And then I am contemplating New York City Marathon again next year. You've done it. It's the most amazing experience in the whole world.

Dr. Correa:
Justine, I wanted to zoom out. We've had a whole variety of guests here and some athletes, but not everybody listening is a runner or even does any kind of competitive or exercise events. And so we've talked some about, "Okay, why once you started running backwards, why backwards?" And why you set new goals that way. But I want to even zoom out further and think about beyond just the competition for yourself, why do you feel like you've wanted to set these goals and do these things, whether it's forwards or backwards running?

Justine Galloway:
I think it means that I haven't given up. That I still have push in me. My dad never gave up. My family has gone through stuff, and they've never given up. I think testing your limits and testing who you are in your body and your brain, and it's not just your body. As a runner, your mind is huge. And testing what you're actually capable to do is really important to me. I don't know in 10 years if I'll be able to run. I don't know if I'll be able to swim or bike, but what I do know is now I'm able to run. And now I'm going to push myself. And maybe I'll regret this in 20 years, but right now I can run.
And I never thought I would run a marathon backwards. I never thought I would get a Guinness World Record. I never set out to do any of those things. But if I'm going to have to find another way to run, I'm going to make the most of it and push myself. And so that's just, I guess, my personality is I had a lot of people, especially early on, and they're like, "Well, just don't run." And again, people who aren't runners may say, "That makes a lot of sense." But for me, I know at some point I might be forced not to run, and this isn't that point now. So I'm going to keep running and keep pushing my limits.

Dr. Correa:
So for you, whether it's the day-to-days of training or the actual race, it's a celebration of you and the things that you love today.

Justine Galloway:
Yeah. And the fact that I can move, and the fact that I can do it. It's funny, I didn't set out to motivate people, and I'm not sure I do motivate people. But sometimes, during races, people will say something. And it's cool, because I feel like it's so easy to just, someone tells you something and you stop. And they told my dad he had Parkinson's, and he ran a marathon three years later. Just because someone says, "You can't" or "You have this" doesn't mean you have to give up.

Dr. Correa:
Well, I think you are inspiring. I think it's great to hear how your father inspired you. What reassuring words would you offer, whether someone is dealing with dystonia or living with another neurologic condition that impacts their movement, what advice do you have for them?

Justine Galloway:
You may not get back yesterday. You may not move the way you used to, but the small movements you can do, the things you're able and capable of doing today, cherish those moments, because tomorrow, it may be different.

Dr. Correa:
Thank you so much, Justine, for sharing your story, sharing your inspiration with all of us. Here's to next November in New York for the New York City Marathon. Hopefully, we'll celebrate together.

Justine Galloway:
Yay. I will hold you on that. We should definitely celebrate together. That'd be awesome.

Dr. Correa:
Well, thanks again for joining us and sharing with our listeners.

Justine Galloway:
Thank you.

Dr. Correa:
Can't get enough of the Brain & Life Podcast? Keep the conversation going on social media when you follow at BrainandLifeMag or visit BrainandLife.org.
Welcome back. And that was an amazing story from Justine, and sharing her own experience with runner's dystonia and how she's adapted to be able to get back to running. I'm now joined by our medical expert for this episode, Dr. Joseph Jankovic. He's a professor of neurology and the distinguished chair in movement disorders, and the director of the Parkinson's Disease Center and Movement Disorders Clinic of the Department of Neurology at Baylor College of Medicine. He's internationally renowned in movement disorders, and is a past president of the International Parkinson and Movement Disorder Society. Joe, thank you so much for joining with us today.

Dr. Jankovic:
Thank you, Daniel, for having me.

Dr. Correa:
Now for our listeners, this continues our discussion on dystonia. We've had two past episodes discussing dystonia, which includes our interview with Billy McLaughlin on his life as a musician with focal dystonia, and our episode with Rogers Hartmann on challenges with cervical dystonia. In those episodes, we get to some of the basics and discussions about those types of dystonia with Dr. Alexander Pantelyat and Dr. Marta San Luciano. So we'll be building on some of those discussions. Joe, for those joining us who haven't heard of dystonia, in general, what does the term describe?

Dr. Jankovic:
The word dystonia refers to a neurologic condition that is manifested by abnormal postures or abnormal movements. They tend to be patterned. That means they are fairly repetitive, and they are always in the same region. The same muscles are often involved.

Dr. Correa:
Now, is a dystonia specific to a certain condition, or is it one of these diagnoses that is a symptom of other causes?

Dr. Jankovic:
So the term dystonia is used in different ways. We use it to describe a symptom that I just described, a condition, but it also refers to a specific disorder. So for example, the most common form of genetic dystonia is called DYT1 dystonia. It's a dystonia that tends to occur mainly in Ashkenazi Jewish people.

Dr. Correa:
So it sounds like there are different ways it could impact individuals in very different age groups or across the age range. What are some of the different age groups that can be impacted by dystonias?

Dr. Jankovic:
Dystonia can occur in any age group. Typically, the genetic form of dystonia, like I mentioned before, the DYT1 dystonia, tends to occur in early childhood around the age of four or five. The children usually start with inversion of the foot when running or dystonia in their hand when writing, and then gradually, over a period of years, it involves the whole body. And so can start in childhood. It may get started in adulthood. When dystonia starts in adulthood, particularly if it starts in a foot or hand, we start thinking about the possibility that this could be the initial symptom of Parkinson's disease.

Dr. Correa:
And what do we know among adults, about how many people are impacted by this condition each year and how many live with it over time in the United States?

Dr. Jankovic:
So dystonia is not a common condition, but the epidemiology of dystonia suggests that it actually is more common than we think. For example, people think of writer's cramp as a normal phenomena, yet we movement disorder neurologists think of writer's cramp as a form of dystonia. And in fact, it's referred to as a task-specific dystonia, meaning it occurs only during writing. So dystonic writer's cramp is probably the most common form of dystonia in the general population, but the other dystonias may occur less commonly.

Dr. Correa:
What would be some of the symptoms that would make someone concerned or they should be aware of as maybe being a sign of a possible dystonia with a task-specific activity or a sports-related activity?

Dr. Jankovic:
Well, typically, the runner's dystonia is manifested during long-distance running, and the most common initial symptom is involuntary inversion of the foot. That is probably the most common initial symptom. It may initially involve one foot, and then over a period of few weeks or months, spread to the other foot. It rarely evolves into upper body, so arms are usually not affected.

Dr. Correa:
What might be some of the invisible impacts of having one of these dystonias, or even the stigma that may be experienced by someone living with a dystonia?

Dr. Jankovic:
Well, unfortunately, initially, the dystonia is not correctly diagnosed. Sometimes it's misdiagnosed as psychogenic or functional dystonia. That is probably the most common misdiagnosis, and that obviously introduces additional stress on the individual and stigma if they are told that it's all in their head.

Dr. Correa:
Justine Galloway... We were having the discussion with her... Explained and shared with us her father had had Parkinson's. So when she was was initially getting evaluated, there was a lot of questions as to whether or not she needed to get an evaluation, and determining if it was an initial presentation of Parkinson's. And initially, they didn't find anything there. Are there other conditions that need to be considered when someone, an adult, starts to present with one of these sports-related dystonias that need to be ruled out before you come to the diagnosis of a runner's dystonia or another sports-related dystonia?

Dr. Jankovic:
Well, obviously, we have to consider a possibility that this could be an orthopedic problem. Patients may have, for example, a stress fracture or tendonitis, or some orthopedic problems. So that is something that we have to consider first. Usually, there is some underlying mechanism for that, like prior injury. And sometimes X-rays may suggest a fracture. So it's not all that terribly difficult to exclude orthopedic problem as the cause of the runner's dystonia. One of the hypotheses for runner's dystonia is that the runner had a prior injury, could be because of repetitive movement and maybe over-training, and then can set up a cascade of events that lead to abnormality in the brain and spinal cord that can lead to dystonia.

Dr. Correa:
So you mentioned this cascade of events. What is it that we do understand about the mechanism of this condition?

Dr. Jankovic:
I wish I could tell you that we have a clear understanding of the pathophysiology of dystonia. There have been many, many studies on dystonia, mostly involving functional imaging type studies, physiologic studies. But just to summarize it in one sentence, we think that dystonia is a result of abnormal network of different pathways in the brain that involve not only the cortex, the surface of the brain, but the deep structures like the basal ganglia and the cerebellum, which is the part of the brain that has to do with coordination. So those three structures, cortex, basal ganglia, and cerebellum, clearly play an important role in generation of dystonia.

Dr. Correa:
So lots of structures and centers within the brain that coordinate our movements and actions, and then send the signals out through our spinal cord. And that coordination seems to be disorganized in these situations.

Dr. Jankovic:
Exactly.

Dr. Correa:
Now, what are some of the options for management and treatment? As you mentioned, these are sports and athletes maybe doing this professionally or for just the love of the art, like Justine Galloway or Kara Goucher as a professional. When this starts to occur, it's a major impact on their lives. And as they're looking forward to options for management and then future therapy, what is out there that's available for them?

Dr. Jankovic:
Whenever I see patients with runner's dystonia or other sports-related dystonia, or performance-rated dystonia or musician's dystonia, try to help them understand what the mechanism would cause. Could be explained to them that this is not a psychological problem, this is a neurologic, physiological problem. Sometimes it does occur after excessive training or a repetitive strain, so we may advise them to slow down on the training.
But one thing we do not advise is immobilization of the limb. We and others have published a number of studies to show that immobilization of the limb, by casting, for example, is exactly the wrong thing to do, and in fact, immobilization of the limb is a risk factor for dystonia. So I would strongly advise against that. We may continue with some moderate physical therapy, but do not recommend complete rest. Ultimately, the best treatment really is injection of botulinum toxin, or Botox, into the involved muscles. And this is considered to be the treatment of choice for most patients with post-rated or performance-rated dystonia.

Dr. Correa:
And what are the potential complications or side effects with the botulinum toxin injections for these specific dystonias?

Dr. Jankovic:
So obviously, the injection has to be done with the correct technique by an experienced neurologist. We need to determine based on examination, which muscles involved, and target only those muscles that are involved in the abnormal posture with botulinum toxin. If used correctly by experienced physician, the side effects are minimal. There may be a focal weakness that may last few days or weeks, but it usually resolves. But that is basically the only side effect of botulinum toxin injections. It's rare to see any kind of systemic side effects.

Dr. Correa:
Now, some individuals, and especially people living with runner's dystonias and sports-related dystonias have described that with the Botox injections, they can get some atrophy of the muscles. Now, do you think that's related to the Botox injections, or more that they're changing their activity level in a muscle group that really was very frequently used in their sports activity and in their training?

Dr. Jankovic:
So all effects of botulinum toxin are transient. I have never, ever seen persistent permanent atrophy of the muscle after botulinum toxin. Yes, they may notice some atrophy, which is, again, transient, and as they resume their normal activity, that muscle atrophy usually goes away.

Dr. Correa:
Now after going through whatever therapy options are chosen and the occupational and physical therapy, how do you suggest someone with a sports-related dystonia or a runner's dystonia starts to do their transition and return to activity and their training levels?

Dr. Jankovic:
Once they start experiencing some improvement after botulinum toxin, we encourage them to get back to their normal physical activity, but not necessarily as strenuous activity as they were doing before. So the process is gradual. Many of my patients were able to return back to their normal activity, but majority of them have modified their activities so it's not as strenuous.

Dr. Correa:
Speaking of adaptations and modifications, notably, Justine, who we had our discussion with, adapted her training not just in her frequency and intensity, but doing some of her training and running as backwards. And she was able to then with backwards running, not have the same impact of her dystonia. What do you think about mechanistic adaptations like that?

Dr. Jankovic:
That's an interesting observation. And in fact, many patients with dystonia make the observation, that if they, let's say, walk backwards, they can walk better than if they walk forward. And we refer to that as a sensory trick. The term I prefer is "alleviating maneuver." So alleviating maneuver is a characteristic feature of dystonia, and walking backwards is just one example of alleviating maneuver.

Dr. Correa:
Inspiring in her own example, she was able to get back to much of the activity that she loved, and then even set world records in her speed for half-marathon and running backwards. Now, I'm wondering, what's the direction of research on dystonia and the science for hope about an improved understanding about both the mechanisms and management options?

Dr. Jankovic:
Well, much of the research right now focuses on what are the predisposing factors for dystonia? Why is it that only small percentage of all individuals, they were dystonia? Obviously, those individuals must be somehow predisposed to develop dystonia. They could be genetically predisposed, like I mentioned, the DYT1 dystonia, or they may be predisposed because they are taking certain drugs. There are certain medications that are used, for example, for psychiatric problems that may predispose patients to develop dystonia. Or they may have an underlying mechanical problem that leads to this peripherally-induced dystonia.

Dr. Correa:
Now, I wanted to highlight particularly something you mentioned, and because it's possible some of our listeners may be wondering this. Given the World Health Organization's and many other organizations' recommendations for increasing activity levels for our cardiovascular and brain health, is dystonia a concern for those of our listeners out there who are adding more minutes of walking and activity level for their day?

Dr. Jankovic:
For the vast majority of people, no. I certainly would not discourage people from exercising, and doing all the things that they are supposed to do to maintain good mental brain and other health. But in people who are predisposed to develop dystonia, in those individuals, we have to be careful. So if somebody has, let's say, family history of dystonia or other movement disorder, and they undergo orthopedic procedure, they need to let the orthopedist know that might be at risk for developing this peripherally-induced dystonia that can occur after casting.

Dr. Correa:
And in those situations, is it that much more important that they get early mobilization and physical and occupational therapy to continue normal movement in the range of motion of the limb?

Dr. Jankovic:
Yeah, absolutely. I mean, I would prefer that they are never casted, but if the orthopedist feels that casting is absolutely essential, then obviously, that needs to be done. But then immediately thereafter, the patients should undergo a fairly aggressive rehabilitation program to prevent these consequences of casting.

Dr. Correa:
And so then overall, the benefit of activity level and exercise is much greater than any risk or concern of this disorganized muscle movement or dystonia for the general community?

Dr. Jankovic:
Absolutely. Yes.

Dr. Correa:
That's good to hear. I wanted to make sure no one was afraid to get started walking, running, or whatever other activity they want to go out and enjoy. Now, those living with dystonia, like Justine and many of the people we've mentioned and these athletes we've referred to, really seem to be models for adaptation. What have you learned from those you've taken care of and supported, and applied in your own life?

Dr. Jankovic:
Well, it's important, obviously, that they have a positive attitude toward physical activity. They don't give in to the disability that they may experience with the dystonia, and stop walking or running or exercising. And exactly the opposite is important, that they are motivated to work with their rehabilitation physician to get them on the right track to get back into a normal, full life.

Dr. Correa:
Well, thank you so much, Joe, for joining us today. We really appreciate you sharing your time and expertise, and everything that you do for the community living with dystonia and movement disorders.

Dr. Jankovic:
Thank you. Thank you for bringing the public's attention to dystonia.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life Magazine for free at brainandlife.org. Don't forget about Brain & Life en Espanol.

Dr. Peters:
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Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain & Life Magazine on many of your preferred social media channels. We're your hosts, Dr. Daniel Correa, connecting with you from New York City, and online at NeuroDrCorrea.

Dr. Peters:
And Dr. Katy Peters, joining you from Durham, North Carolina, and online at KatyPetersMDPhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health, and everyone living with neurologic conditions.

Dr. Peters:
We hope together, we can take steps to better brain health and each thrive with our own abilities every day.

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Finding New Ways to Move Forward with Justine Galloway

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