Rogers Hartmann on Beating Dystonia

Episode Transcript

Dr. Nath:
Welcome back to the Brain & Life podcast by the American Academy of Neurology. Daniel, it is great to see you. It looks like you have survived running the New York City marathon.

Dr. Correa:
Yeah. I'm a little sore-

Dr. Nath:
Mostly survived.

Dr. Correa:
Yeah. I'm moving around well. Enjoyed it. It was so amazing to see New York City and all the people come out and just-

Dr. Nath:
All the bridges.

Dr. Correa:
... support all the runners and run all the bridges.

Dr. Nath:
Absolutely. This week's guest, Rogers Hartmann, she has a running story. It's a little different than your running story, but basically she was diagnosed with cervical dystonia, which is a brain problem, which can cause very painful and involuntary contraction of the neck. And essentially she tells her story about her disability, and through treatments, how she went from being in a wheelchair to walking with a cane, to now running two miles a day.

Dr. Correa:
I think it's amazing. I mean, it's hard enough just to train and get yourself out there to run it all, but to imagine someone dealing with a dystonia like this, and there's so many focal dystonias that occur or specific to certain muscle groups and cervical dystonia being one of them.

Dr. Nath:
She has this neat kind of way of thinking about it. She talks about her disability and the struggles with her cervical dystonia as being like a "frenemy", which I thought was awesome. That it's something that's kind of there that she needs to deal with and also live as normal of a life as she can. And she talked about this on Oprah too.

Dr. Correa:
Well, I mean that advocacy for a condition and really turning it around as a tool to support the community makes me think back of our interview with Jimmy Choi.

Dr. Nath:
That's right.

Dr. Correa:
And he talked about how he dealt with all the challenges that he had very early on with the young onset Parkinson's disease diagnosis. And then over time has turned that around to do activities like running marathons and many-

Dr. Nath:
And Ninja Warrior.

Dr. Correa:
... other fundraising and Ninja Warrior to fundraise and support research and advocacy and bring awareness to the community.

Dr. Nath:
Just to let everyone know, we're going to have a couple musicians on in the next couple weeks, Julia Easterlin talking about migraines and John Driskell Hopkins talking about ALS. So as a musician, I'm really excited for everything coming up. Make sure we hit that follow button so we can hear about every new episode as it comes up.
Today we are speaking with Rogers Hartmann, who is an extensive film and TV career, and is a tireless rare disease advocate. She's worked as an agent and runs her own production company, and could tell us countless stories about the ins and outs of getting books, and TV, and films from an idea to a finished product, which I think is really fascinating. But today we're going to be talking about how she has advocated for herself in both the diagnosis and living with a rare brain condition, dystonia, and specifically cervical dystonia. She's now the founder of Beat Dystonia, and she's been spreading the word about this disorder to bring about awareness to the public, including speaking on Oprah and the Today Show. So welcome to the Brain & Life podcast, Rogers Hartmann.

Rogers Hartmann:
Thank you so much. It's a pleasure to be with you.

Dr. Nath:
I would like to hear from the beginning and for our listeners too, when did you start to notice that something was off?

Rogers Hartmann:
I would say in about 2007, I started having a crick in my neck. It seemed very innocuous. I was not concerned about it at all. And denial comes in quite handy when you don't want to believe something is wrong and it is something as minor as a crick in your neck. I just thought, "Oh, I slept on it wrong. I'm going through stress at work. I was going through a breakup, et cetera." I thought it could be any one of those things. So I don't want listeners to think, "Oh, gosh, I have a crick in my neck."

Dr. Nath:
It's always... Yeah.

Rogers Hartmann:
It's the edge... It's over. So it just didn't go away. It got worse and it started to twist over the course of about six-plus months started to pull to the right so far that my head was below my waist, meaning I was tilted so far that my head was upside down.

Dr. Nath:
Yes. That must have messed with your vision. I can imagine.

Rogers Hartmann:
Yes. I mean, I adapted, but it's not something you really want to adapt to. Yes. It throws your equilibrium off. It throws your balance off big time. You hit your head constantly. I was hitting my head constantly on door jams and whatnot, but I got used to it. I'm one of those people who rolls with the punches, and Oprah made me wear, I shouldn't say Oprah made me, but the producers had me wear a camera on my head to show my perspective, and I actually hit my head while filming. It was pretty funny.
So I mean, one of the ways I've gotten through all of this is by having a sense of humor about it because there I am having all these people walk me, walk around in my distorted way and hitting my head in front of them and all I could do was laugh. So anything to get the word out, even little humiliation here and there. Yeah. So it threw everything off and eventually I stopped being able to drive. I really couldn't get comfortable sitting, standing, doing anything because I was so contorted and in constant muscle spasm in my neck and back. And it actually started out as cervical dystonia and became generalized to dystonia, which again-

Dr. Nath:
Oh, goodness.

Rogers Hartmann:
... I don't want to frighten people because it can not all focal dystonias turn into generalized, but mine did. And so it became a whole body situation.

Dr. Nath:
To back up a little bit for anyone who's not as familiar with dystonia, so essentially this is a brain issue that results in abnormal tightening of muscles. And patients will tell us sometimes the biggest thing that they tell us is how painful it can be to have these muscles contracted abnormally and not get a break. What were you doing for pain, I'm curious, before you completely knew what was going on?

Rogers Hartmann:
I was experiencing a lot of pain. There was not much I could really do. Of course, I went to Tylenol, unfortunately I did turn to a little bit of drinking of wine because that definitely relaxed the muscles, but that ended up not being a very good path.

Dr. Nath:
No, I'm glad you're sharing that though because that's pretty common. So thank you for saying that. Yeah.

Rogers Hartmann:
Yes. It is not something you want to turn to for any form of muscle or mental relaxation. They put me on a number of things for pain like Artane, which was not a good drug for me, and I was able to function, but then I would look back on my day and not really be able to remember what I had done. I was cognitively okay in the moment, but then I would just forget what I had done throughout the day. But if I were asked specifically, I could come up with what I had done. I was on a very high dosage of clonazepam, which is another controlled substance that no one should be taking high dosages up because that is definitely very addictive.

Dr. Nath:
Certainly not long term. Yeah. The benzodiazepine, absolutely. Yeah.

Rogers Hartmann:
Yeah. And I do still take that, but I only take one milligram a day. So that's next to nothing, it's only 0.5 in the morning, 0.5 at night if I need it.

Dr. Nath:
Good. That's better.

Rogers Hartmann:
I'm drug free and alcohol free.

Dr. Nath:
Wow.

Rogers Hartmann:
Yeah.

Dr. Nath:
And I'm looking at you, because I can see Rogers right now on video, and your head does not appear contorted and you don't appear uncomfortable right now.

Rogers Hartmann:
No. I am not in pain, and I'm good.

Dr. Nath:
That is great. And from what I've read, there was a period of time with your head, I'm sure contorted as it was, and with some generalized dystonia, you had difficulty walking and you did use a wheelchair for a period of time.

Rogers Hartmann:
I did.

Dr. Nath:
How have you gotten to where you are now? Or do you know exactly what it is that's gotten you more functional?

Rogers Hartmann:
Absolutely. I actually went into remission after a lot of physical therapy and being on certain medications. And then I went and got a master's in writing at Sarah Lawrence in New York and got into a car accident, and that sent me out of remission. But over time, I ended up in a situation where I was in assisted living, and I thought I cannot be in assisted living for one more day. And so I got deep brain stimulation, which is the brain surgery wherein they put a device in your brain that goes into a battery in your chest. I'm sure you're familiar with it.

Dr. Nath:
Yeah. You deep brain stimulator in place. That's amazing.

Rogers Hartmann:
It is.

Dr. Nath:
For our audience, so deep brain stimulation, DBS, you might hear it called, is essentially a small stimulator that's placed within the brain, depending on what the brain issue is, that can help essentially either turn off an area or rewire things a little bit and it can make a big difference. And there's deep brain stimulation used with movement disorders like Parkinson's disease for example, as well as some other diseases like OCD and some psychiatric conditions as well. But it's really great to see that you had... Well, it looks to be a pretty good outcome with your dystonia in a deep brain stimulator. That's fascinating.

Rogers Hartmann:
Yes. I can walk, and obviously my neck is normal, and I really don't have much pain anymore. And I don't want to say pain is a choice, but for me, I do not focus on pain. I might experience pain throughout the day, but I really don't make it a focal point of my day. I would rather think about other things that I have going on. And I feel like when you focus on something like that, you feel it more.

Dr. Nath:
Absolutely.

Rogers Hartmann:
And I've had severe pain, so for me to redirect my thought processes, and I don't know if anybody has heard of neuroplasticity.

Dr. Nath:
Yes. Yeah. Absolutely.

Rogers Hartmann:
But I fully believe in that as far as the power of thought and your neuro pathways, and redirecting your thoughts can make a huge difference.

Dr. Nath:
So that's been studied, I mean in terms of pain perception and looking at people who meditate or have mindfulness training. It's all one organ that does all of this. I'm curious, did you have to train yourself to do that?

Rogers Hartmann:
I did. I started studying transcendental meditation, and just being very conscious of my thoughts. The way I see it, I'm a very visual person, so I picture almost like when you go skiing and they give you a map of the mountain, that's the different path, the different slopes that you can go down, you go down the ones that are groomed, that are skied on the most. And if you have a negative pathway, let's say, and you keep going down that one, that's the one that you're most likely to go down. And so I started creating new pathways for myself, and it really worked. It was kind of a miracle, and I didn't expect it to work as quickly as it did. So I created almost a new ski map for my brain.

Dr. Nath:
I love that. I might steal that, by the way, with patients. That's a really good way of saying it.

Rogers Hartmann:
It's something that I would visualize. If something negative would come up in my mind, or if I were thinking, "God, I wish I could walk my dog down the block." Which is difficult for me to do still. I would change it into something else. Like, "You know what? I'm so lucky that I have a loving family and that they are here for me, and that I have air conditioning and I'm sitting on my couch right now watching... Real Housewives of Beverly Hills or something." I'm kidding. But I would switch it into something that brought me happiness as opposed to thinking about something that I couldn't do.

Dr. Nath:
I've got to say that's not an automatic thing for most people. That's something that people have to work on.

Rogers Hartmann:
Yeah. So the more you practice it though, the more automatic it becomes.

Dr. Nath:
I'm curious about something, or maybe just kind of fixated on this. So you had deep brain stimulation surgery. I'm just curious, when the idea of surgery was brought up to you, possibly in a doctor's office, what was your reaction? Were you shocked that that was an option?

Rogers Hartmann:
I was terrified of getting brain surgery, and then years later I was in assisted living and I just thought, "I have to get on with my life." And the only way I'm going to get on with my life is by getting better. So I met with the Medtronic people, the Medtronic, the main company that make the surgical implants. And that was the meeting actually that convinced me to do it because they were so knowledgeable, obviously because they're the ones who represent the product. They're in the surgeries, they told me about all of the electronics of it, just the mechanics of it. And I thought, "This is doable." And then I was not afraid at all. And I went to my neurologist, I said, "Schedule the surgery. I'm in." And my dystonia, I should have mentioned at the outset is genetic.

Dr. Nath:
I was wondering about that because your brother is affected as well.

Rogers Hartmann:
Yes, and so is my nephew. And he also had deep brain stimulation. It worked perfectly for him also. It runs in our family. But not everybody who has the gene gets dystonia.

Dr. Nath:
Correct. Yeah.

Rogers Hartmann:
And they're doing studies right now on what causes people to go from being DYT1 positive to having dystonia. And I think the main thing is stress that causes you to crossover from stress or anxiety.

Dr. Nath:
Did you notice that with yourself?

Rogers Hartmann:
Yeah. What's felt to me, two week long panic attack and then it was the onset from there.

Dr. Nath:
That's interesting.

Rogers Hartmann:
It was not good. It was not like me. And then all of a sudden I started getting symptoms.

Dr. Nath:
So you got the surgery, and just roughly how long did it take for you to notice like, "Wait a minute, I think I'm feeling a little better."

Rogers Hartmann:
Surgery was on Tuesday. That's when they put the electrodes in the brain, and then they put the batteries in two weeks later. You do have what they call a honeymoon period from poking around in your brain where they put the leads, you get some relief. And so they put the batteries into my chest, and I start messing around with the settings, with the frequency and the hurts and...

Dr. Nath:
The stimulation settings. Yes. Yes.

Rogers Hartmann:
I would say probably two months before you really start to feel a huge difference

Dr. Nath:
For our audience, essentially what she's talking about is the deep brain stimulator puts essentially an electrode in a part of the brain and then stimulation can be delivered there. And essentially how much stimulation and how it's delivered can be tweaked essentially. And we can't change those parameters very quickly. We can't just go from zero to a hundred. And that's why it's little changes every couple weeks or so. And I can imagine that you would need to be very patient to wait until you get to those optimal settings. But that is something good for people to know that it is a process. It doesn't just end with the surgery for sure. I want to know some about Beat Dystonia. Tell me what you're doing with your organization.

Rogers Hartmann:
So I set up Beat Dystonia because Oprah got to me so quickly and it was just by chance because she read my blog. And I didn't know that anybody was reading it. And suddenly I get this call, and I turned down the first offer because they wanted me to go on with Montell Williams and Magic Johnson. And I said, "That doesn't really make sense to me because this is a movement disorder." And they called back and said, "Do you want to go on with Michael J. Fox? We would like to set up a show for YouTube because they're so related." And I said, "Absolutely, that makes more sense."
So anyway, I set up Beat Dystonia right before Oprah aired, so that I could raise money for research. So I run. It's patient run. I only raise money for research. I have zero overhead, I don't take a salary. And I do advocacy all pro bono, all of my referrals to doctors pro bono. I've built a database of a worldwide database of doctors to refer patients to and people can contact me directly, which they do and have for years. So it's 100% research, which is, I think I'm the only one who does that where I don't have any overhead, which is nice.

Dr. Nath:
So then every dollar can go the farthest it can go.

Rogers Hartmann:
Yes. Every single dollar goes to research.

Dr. Nath:
Oh, that's fantastic. For anyone out there listening who might be a younger person or an adult who's listening who might be just getting that first diagnosis of dystonia, is there something you want to tell them?

Rogers Hartmann:
I think one of the most important things is to remember that there are people out there like me and other people who understand what you're going through and who are there for you. I can't tell you how many people I've been... First person they've spoken to whose had dystonia. And I just feel like people feel alone and I just don't want them to feel alone in it because there are plenty of us out there. We have a lot of support groups, and like I said, "Reach out to me or others to get referrals for doctors." And also I think another thing that's important is that dystonia is not degenerative and that you cannot die from it. Yes, you can feel isolated, and scared, and alone, and I just think attitude is just so important and just to try to keep your chin up to use that-

Dr. Nath:
Literally.

Rogers Hartmann:
Yeah. Exactly. And just to know that there are a lot of good treatments out there, and that it's being studied more and more, and that there's a lot more awareness out there. So I would just say don't give up hope and reach out to people online and see who you trust, and be judicious about what kind of advice you take.

Dr. Nath:
Just take it one day at a time, right?

Rogers Hartmann:
Yeah. Exactly. Exactly. And just know people are out there for you to help you, and that means me. I'm there for people for sure.

Dr. Nath:
Thank you.

Rogers Hartmann:
I really appreciate you having me today.

Dr. Nath:
Life without brain disease is possible, but not without research. For 30 years, the American Brain Foundation has brought researchers and donors together to fund research across a broad spectrum of brain and nervous system diseases and disorders in the pursuit of improved treatments, preventions, and cures. To learn more about focal dystonia, we are catching up with Dr. Marta San Luciano, an associate professor of neurology at UCSF, and she's a movement disorders specialist, which means she sees patients with disorders including focal dystonia, and she also conducts research into the genetics of dystonia and some exciting novel potential diagnostics. Welcome to the podcast, Dr. San Luciano.

Dr. San Luciano:
Thank you. Thank you very much, Dr. Nath, for the opportunity to speak here today.

Dr. Nath:
Just to start off, Rogers was telling us about her experiences with focal dystonia. What would you say to someone who's just learning about this disorder? What is focal dystonia?

Dr. San Luciano:
Dystonia is a brain condition. It originates in the brain. A condition that causes involuntary movements and postures of the body. A focal dystonia is when dystonia only affects a single part of the body. For example, the neck. That's the most common form of focal dystonia causing involuntary twisting and posturing of the neck. It can affect the face, or the arms, or the legs, or the trunk as well.

Dr. Nath:
When you first see patients with this or when they come into the clinic, I'm just curious, had they maybe thought they had something else going on and tried to pass out their symptoms as something else for a long time? Or do they come right in as soon as they start? What do you think?

Dr. San Luciano:
I think most people do not think about dystonia first with a very rare exceptions, a lot of people with cervical dystonia in dystonia effect in the neck region will think that they slept wrong, that they have muscle spasm.

Dr. Nath:
That makes sense.

Dr. San Luciano:
And they will see a variety of providers, and it is not uncommon for those patients to be diagnosed by physical therapists. When they see the involuntary posture or the head tremor, sometimes patients with focal dystonia effect in the arm, for example, may think that they have carpal tunnel and other orthopedic issues.

Dr. Nath:
Wow. A few people before seeing a movement disorders neurologist like yourself. Yeah, that's really interesting.

Dr. San Luciano:
Yes. Yes. And usually the third, fourth, or fifth person that they've gone through. And it is not uncommon for them to see several providers before somebody suggests the diagnosis of dystonia. There are some exceptions. There are very obvious involuntary movements or irregular tremor, then most people are going to be referred to neurology.

Dr. Nath:
I'm guessing that's not the majority of your patients, but that there may be some that may have a family history of other people who had similar symptoms, which also may give them the heads up a little sooner, maybe first or second and not later. About how often do you see that where someone has a pretty strong family history?

Dr. San Luciano:
For early onset dystonia, dystonia started in childhood and early adulthood. That is more common and we see that. But I will also add in that many of the genes associated with dystonia have what we call low penetrance, which means that not everybody that has the genetic vary the genetic mutation will develop the disease. So family history may not be that common or may not be present at all, and yet that person still can have genetic dystonia.

Dr. Nath:
Oh, they may have gotten the gene from someone who didn't have symptoms essentially.

Dr. San Luciano:
Exactly.

Dr. Nath:
Oh, that's interesting. Yeah.

Dr. San Luciano:
And that is not uncommon in genetic forms of dystonia.

Dr. Nath:
That's so interesting. And I don't think we completely understand why that is. What interaction with the environment or what it is, where some people may have more severe symptoms or symptoms at all compared to others with the same gene. I just find that to be really interesting.

Dr. San Luciano:
So that is one thing that has puzzled all of us in doing this type of work for a long time, said why, even in families in which the gene is known to have very different presentations.

Dr. Nath:
So I guess when you do genetic testing with families, then there has to be the big caveat of, "Okay, we may find this gene with you. We don't completely know exactly what that's going to mean for your life." Which I guess different people will take in different ways. I guess that could be anxiety provoking, or maybe some people will be optimistic. I don't know how you approach that.

Dr. San Luciano:
I think my approach to genetic testing is generally that more information is generally good, finding out the reason why a person has a condition is important. At the same time it needs to be paired with very appropriate genetic counseling as you just point out the discussion of decreased penetrance and not everybody to develop it, or how variable the symptoms can be at the age of onset two. These are not simple concepts to explain. So pairing the testing with appropriate genetic counseling can be very helpful for families. Of course, families who want to know, not everybody wants to.

Dr. Nath:
Yeah. And that's something that you discuss with them too when you're getting the testing as well. I mean, I agree with that.

Dr. San Luciano:
Yes. I would add one more thing. This was brought up in the recent Movement Disorder Society annual meeting that happened last month. We are learning that certain genetic types of dystonia can respond differently to different treatments.

Dr. Nath:
Oh, that's so interesting.

Dr. San Luciano:
So not only knowing the genetic background can help in giving that person information and a cause of their dystonia, and in form of prognosis, we know different genetic types may behave differently, and affect different parts of the body, and may progress, not progress in different ways, but also can determine what therapies are we going to use. We know in the deep brain stimulation treatment arenas, a pacemaker like device that we implant to change the way neurons function to treat dystonia usually is generalize. So dystonia effect in multiple parts of the body or very severe focal dystonia, including cervical dystonia. The response to this therapy can vary depending on the genetic background with certain genetic forms responding really well. So we may suggest surgery much earlier than for other people, and others in which there's a much more variable response in which we may be more cautious recommending this type of therapy.

Dr. Nath:
So that's personalized medicine, we're really coming into that. People have been talking about that for a long time, but this is an example where it's actually starting to happen that we can get genetic information to give us more data. It's not complete data, but more data as to which path to go forwards.

Dr. San Luciano:
I would say that the most common medication use for focal dystonia are botulinum toxin injections. That is the first-line medication. And when it works and when it works well, it is something of beauty because it is a focal treatment. We inject botulinum toxin, one of the brand names is Botox. We inject them directly in the overactive muscles. Dystonia, it's a brain disease that causes overactivity of certain muscles that pulls in certain directions. So we can identify those muscles and target them with injections, so they will be strategically weakened to address the movement and not only the movement but also the discomfort. A lot of patients with cervical dystonia will have neck pain and a lot of discomfort and the injections can be very useful for that. The injections typically last most commonly around three months. So patients get injected about four times a year, and they tend to be pretty quick. And even though not painless but pretty quick and tolerable injections, and provide relief for several months without having to take a daily medication.

Dr. Nath:
That's really great that you bring up that there's different medicines that are given in different ways that can work together kind of synergistically. Just for anyone out there who's listening who may have a diagnosis just to know there's a number of things that we have in our pocket to help these patients with both the abnormal movement and the pain as well. I'd like to hear a little bit about surgical treatments. We get a lot of questions about this from people saying, "My goodness, why and how would a brain surgery fix my neck?" Can you tell us a little bit about in general terms how deep brain stimulation works?

Dr. San Luciano:
We have some understanding, although we don't fully understand how this therapy works, but deep brain stimulation entails the implantation of a pacemaker-like device that has a battery implanted in the chest that is connected to a connector wire that goes underneath the skin. And then connected two wires, usually to one per side of electrodes that go deep in the brain in the addressing a part of the brain that is involved the generation and control of movement called the basal ganglia. That part of the brain we know is affected in dystonia. Different dystonia types is also the part of the brain that gets affected in Parkinson's disease, for example, in a different way. And we know that the neurons in that region are not behaving in the same way as a person without dystonia, without taking voluntary movements. By introducing an electrical current very strategically with a very particular shape of that electricity, we can make the neurons behave in a more normal pattern. And that is how we think it corrects the movement.
There is a one big difference between different stimulation for Parkinson's disease or tremor. And for dystonia it is that for Parkinson's disease and for tremor, we tend to see the effect right away. But for dystonia, the effect is typically a big delay. We start stimulating, and some people may benefit right away, but most people, when we stimulate in the most commonly implanted target, there will be a delay of several days, weeks, sometimes months before the improvement takes place. But it can be a very powerful tool for dystonia that affect the entire bodies. Certainly generalize dystonia or several body parts or very severe focal dystonia.

Dr. Nath:
That's really interesting. And I think this is an example because this comes up sometimes of where neurologists work very closely with another type of specialist for someone's care. That this is a situation where neurologists and neurosurgeons discuss a patient's case very closely together in a really collaborative way to figure out exactly where are we stimulating? How are we stimulating? And what the goals are? And I think that's a really nice example of that. For anyone listening right now who may have just gotten a diagnosis of focal dystonia, is there something you want to tell them about where you think the field is headed or any words of advice?

Dr. San Luciano:
I think I would start by saying that they're not alone. A lot of people with focal dystonia can feel very isolated and very lonely because they have this rare disease, and they may not know anybody with dystonia. Dystonia is not that common and it can be very scary. But there is a community out there of patients, and providers, and researchers that are interested in dystonia. Second, to have a neurologist or a movement disorder specialist who knows about dystonia that can provide counseling and advice on therapy. Not all providers, not all neurologists can feel comfortable with the treatment of dystonia, and specifically, for example, botulinum toxin injections. That requires a level of training and a level of comfort in doing the injections to get the best outcomes. So go to a specialized center to see somebody who has experience to perform this injections because that's where the patients are going to get the most benefit.
And then on that same line, seeing dystonia experts are going to provide additional therapies. Fortunately that patient's focal dystonia is severe enough that will require advanced therapies. There are studies ongoing on new botulinum toxins limited though on medications. In some institutions there are studies on genetics of dystonia and as well on surgical therapy. So getting involved in the community either through the Dystonia Medical Research Foundation or the Movement Disorder Society support groups, those can be very helpful.
Also, on a couple of things, especially for patients with adult onset cervical dystonia, which is the most common form of focal dystonia, the importance of physical therapy in conjunction with any medical or surgical therapy to improve functionality, to avoid orthopedic complications, to improve pain and discomfort. So importance of physical activity, exercise and physical therapy for patients. And then one last thing that was highlighted again at the Movement Disorder Society annual meeting in the last month, which was the recognition that a lot of patients with dystonia, including focal dystonia, have other non-motor symptoms, so other symptoms that are not just the movement disorder and that includes higher rates of depression, anxiety, and even suicidality. So to be very mindful of that aspect of the disease, it's not just them having a chronic illness that is a part of the illness and that is something that us providers need to be mindful and screened for.

Dr. Nath:
I see. Yeah, because it's all one brain, right?

Dr. San Luciano:
Yes.

Dr. Nath:
It's only one organ that does all of those things. And I think as an epileptologist, I know there's something similar that many of our epilepsy patients have depression as well, and sometimes when we get so focused on our one problem, it can be easy to have blinders on and not think about those things. I think it's really great that in the meetings that all of the neurologists are coming together and talking about the whole patient and not just one aspect of their care. Are there any specific resources, you did mention this briefly that are good places to start for patients looking for general information that you'd recommend?

Dr. San Luciano:
Yes. I think for general information of what dystonia is and what the different treatments are and where to find providers, the Movement Disorder Society is a good place. The Dystonia Medical Research Foundation, the DMRF, is also a very good resource for patients and also opportunities and as well as the American Academy of Neurology.

Dr. Nath:
Well, thank you so much for joining us and talking about this really interesting condition, but also all the different ways that we can think about treating it and the future. I think it's exciting.

Dr. San Luciano:
Yes. Thank you very much.

Dr. Nath:
Thank you.

Dr. Correa:
Thank you again for joining us today on the Brain & Life podcast. Follow and subscribe 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.

Dr. Nath:
Also, for each episode, you can find out how to connect with us and our guests, along with great resources in our show notes. You can also reach out by email at blpodcast@brainandlife.org. And you can call in anytime and record a question at 612-928-6206.

Dr. Correa:
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Dr. Nath:
Special thanks to the Brain & Life team, including:

Dr. Correa:
Nicole Lussier, our Public Engagement Program Manager.

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And Andrea Weiss, our Executive Editor for Education and News Publications.

Dr. Nath:
We are your hosts.

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Daniel Correa, joining you from New York City and online @NeuroDrCorrea.

Dr. Nath:
And Audrey Nath, beaming in from Texas and on Twitter @AudreyNathMDPhD.

Dr. Correa:
Thank you to our community members that trust us with their health and everyone living with neurologic conditions. We hope, together, we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Nath:
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Rogers Hartmann on Beating Dystonia

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