Welcome back to the Healing Pain Podcast with Nancy Byl, PT, MPH, PhD, FAPTA
In this episode, we’re discussing the neuroscience and treatment of focal dystonia. My expert guest is Dr. Nancy Byl. Dr. Byl has been a practicing physical therapist for many years. She assumed leadership as Department Chair and participated in academic development, teaching, and administration at the University of California, San Francisco’s Graduate Program in Physical Therapy. As a clinician and researcher, she’s an expert in the cause and treatment of focal dystonia. Working with collaborators in neuroscience, she designed an animal model to study the etiology of focal hand dystonia. She created a paradigm shift in the understanding of focal dystonia as a case of neural maladaptation of sensory and motor processing.
Using imaging techniques, her team demonstrated that learning-based sensory-motor training for patients with focal dystonia, not only improved sensory discrimination and accuracy but modify the topography of the sensory cortex, improve neuronal firing patterns and improve motor control. In this episode, you’ll learn all about the cause and the treatment of focal dystonia as well as Dr. Byl’s evolution as a physical therapist, both in research, academia and clinical practice. Let’s get started and let’s meet Dr. Nancy Byl and discuss focal dystonia.
Watch the episode here:
Focal Dystonia: Treatment and Neuroscience with Nancy Byl, PT, MPH, PhD, FAPTA
Nancy, thanks for joining me on the show.
Joe, I think this should be fun. I’m looking forward to talking with you.
I’ve heard about your work for so many years, and I finally had the opportunity to meet you in person in Combined Sections Meeting in Denver. We talked and I got to know you and some of your family members, which was nice. I was honored to have a meal with you and learn all about you and your career as a physical therapist, both in clinical practice, research and education. We’re going to talk about focal hand dystonia, a very specific diagnosis. I know you have lots of ways to help people, clinicians, as well as people who struggle with this problem. Take us back a little bit into your career and let us know how you got started.
I graduated from UCSF back in 1963 with a Baccalaureate degree, which as everyone knows is not in keeping with current education. I worked the first year in a children’s hospital and then I moved to acute care and public health hospital and finally to a county hospital working in acute care. When I came back to UCSF after moving around with my husband, I realized that physicians didn’t know very much about physical therapy. I needed to at least broaden my education and increase my exposure. I went back to get a Master’s in Public Health from UC Berkeley. I was in a class of 50 where 48 of them were physicians and I was the only physical therapist. The scary part was two of the women in this class happened to have been in my husband’s medical school class.
It was a little bit intimidating, but I learned a lot about marketing and interdisciplinary education, more exposure in the community. After I got my Master’s, I called UCSF, the Division of Ambulatory Medicine, and I said, “I think you need me on your faculty.” The chair was taken by my audacity to suggest that, that he invited me for an interview. I interviewed with the Chair of Ambulatory Medicine, who later became the Associate Dean of the School of Medicine. I was given two jobs. One was to work with researchers at UCSF to help them broaden their goals and objectives to look at translating their findings to practice or improving care. Also, we started a Primary Care Residency Program, which was pediatrics and medicine, then I was the outcomes reviewer.
While I was there, I suggested that we offer elective in physical therapy and rehabilitation to medical students or students in nursing, pharmacy, or dentistry. We ran an elective course on rehabilitation for years and I invited a couple of the physiatrists to the course with me. After having a Master’s, I became an advisor to the dean on the curriculum and physical therapy at UCSF, which was being threatened with being closed because the dean didn’t want to give the program any money. I decided the only way I was going to change anything was to go back and get my Doctorate and then come back and be a faculty member. The PT program had been at UCSF for 42 years at that time and there had never been a faculty member whoever had received tenure.
I got my PhD from UC Berkeley and a joint program with San Francisco State in special ed, and then I was able to do some neuroscience research at UC Berkeley. When I finished my program, I took a faculty position at UCSF in the curriculum of physical therapy. Two weeks after I’d been there, they had an accreditation site visit and the program was placed on probation partly not because the program was bad, but the chair was not a physical therapist. That’s a requirement for accreditation. The dean called me and said, “I would like you to be the acting chair.” I said, “No,” I was unwilling to do that. He needed to recruit a tenured faculty member to be chair and because I’d already been on the faculty for about four years before going back to get my PhD, it would have been hard for me to become a tenured faculty.
I said, “I wouldn’t take the job.” The vice-dean then called me and said, “You have to do it.” I said, “You’re my mentor, but I can’t do it unless they’re going to give this a tenured appointment.” After much to do, I finished my dissertation. I was in an in-residence position and then transferred into a tenure-line position, which meant I had to be productive with research. I had to do it within five years. I was unable to find a partner in my interest in stipular processing and learning so I decided to do wound healing because the vice-chair of surgery invited me to join his lab. I learned a lot about wound healing, hyaluronic acid, amniotic fluid, the use of TENS phonophoresis, and working in an animal-based protocol.
We were particularly interested in oxygen delivery as a way to improve wound healing and the same with early wound healing with hydronic acid and amniotic fluid. While that was wonderful at the same time, I became a consultant for the health program for performing arts. In that setting, I learned a lot about the problems of performing artists, particularly this problem of hand dystonia. Now that I had my foot in the door and we were well-published in wound healing, I could then pursue my interest in hand dystonia. I joined with the faculty in neuroscience and Dr. Michael Merzenich, and then began my studies on primate research and the effect of repetitive movement training and what happens to the cortex.
Thanks for sharing that. It’s a beautiful history. I’m sure there are a couple of bumps and barriers along the way but you’ve overcome them. How many years you taught at the university?
I was there for many years. I became a Professor Emeritus back in 2010 and have continued to be involved in mentoring students and doing some teaching, particularly giving lectures for different groups that are not necessarily associated with the university, but I was very fortunate to be tenured. I was the first tenured faculty at UCSF and then I was able to get one other tenured appointment with Kimberly Topp. We already have three tenured faculty at UCSF. When we started the program to change the Bachelor’s program to a Master’s, I knew the only way to make it more difficult for the dean to try to terminate the program was to join with San Francisco State and we became the first joint program in physical therapy at a Master’s level. We transitioned over the years to entry-level DPT and went from 30 students to 60 students, which I think is too many.
The partnership has been an interesting one. They’re both public universities, but one is in the Cal State System and one is at the University of California. The University of California is supposed to be a Doctor level, graduate-level training, and the Cal State is supposed to be mostly undergraduate up to some Master’s programs. With the DPT, we had to go to the legislature and because we were a joint program, we were able to argue that all the Master’s programs in the Cal State System should be allowed to do a DPT. Otherwise, they’d have to start all new programs in the State of California, which did not make a lot of sense. It was quite an interesting journey and it’s been one of the best things we’ve ever done for that program. We were able to start a faculty practice. We now have two residency programs so we did a lot since the days when I got a baccalaureate degree.
It’s interesting to know your own personal journey through your own education from a Bachelor’s to Doctorate, at the same time, the entire profession is changing as well, going from a Bachelor’s to a Master’s to DPT. You wind up being the department chair for many years, and you’ve done amazing work in California. Let’s talk about some of the brain research and how you dip your toe in that water because a lot of what you have studied and researched is not only using focal dystonia but also comes up in other pain science education and other areas. It’s informed of a lot of different parts of physical therapy and rehabilitation.
I do want to say that the reason we were successful at UCSF is that I had a great faculty and those faculty were committed for almost as many years as I was so we all had to change. One of the strong things about change and changing as a group is that we were all supportive of each other, including encouraging people to do more research. In this problem of dystonia, I had taken a video of several different patients who had focal dystonia. I showed them to Michael Merzenich, who I call the Father of Neuroscience. He had been doing a lot of work on plasticity for many years. In fact, his first work was on auditory plasticity and he was the first to apply his findings to the development of the first cochlear implant. I knew that he was potentially open to something new.
If I was willing to work with primates, which is getting up at 3:00 in the morning and training monkeys because they sleep during the day and they’re awake at night, so you have to be there 24/7. When Mike looked at this movement dysfunction, it didn’t make any sense from a logical, organic, cortical motor understanding of why this movement dysfunction was only joined voluntary performance of a target task. It was only one limb. It was responsive to changing positions like if you turn somebody upside down on inversion traction and you put on some sensory enhancers, then the dystonia would get better. We were interested in whether we could produce this dystonia by repetitive test training. Nancy Ma’s monkeys are small, not very socially friendly, but not dangerous either as a macaque can be dangerous.
We created a hand squeezing test that we asked the monkeys to repetitively to do for as long as we could get them to do it to get food. They knew that we couldn’t deprive them so every time they squeezed the handpiece, they got a little more food, but some of the monkeys didn’t like doing that. They’re like people. I learned right then that some people are driven to do what you ask them to do. There are some people who could care less about doing it and won’t do it until they get what they want. There were the monkeys that didn’t want to train and the monkey suit trained incredibly quickly to get more food. They didn’t get fat because they were type-A personalities, but we were able to train them.
When we saw they were having difficulty doing the task, then we decided it was ready to map the monkey. Brain mapping is no easy task. It takes about five days, 24/7. You have to have a team. You have to have somebody, preferably a physician who will anesthetize the monkey and keep the monkey healthy and doing well while we map the brain. We had a team and we rotated the team over five days, mapping continuously, and the map was a mess. It did not meet the expectations of a logical topographically organized map. When I showed the data to Dr. Merzenich, he said, “You don’t know how to map.” I said, “Maybe you should come in for the next monkey and you do the mapping because these maps are strange. There would be very large maps with what should be small receptive fields and they may be representing the whole hand instead of even the segment of the digit.”
Mike came in that next time we mapped and he said, “You’re right, this is a mess.” That allowed us to publish the data on what high levels of repetition can do in terms of modifying the topography of the brain. He knew that the map was definitively organized and he had a lot of proof of that from previous work. When he saw that you could degrade the map, then he found some other interesting things like how the map gets degraded if you have an amputation or if you have some kind of injury. The question then was, if we can degrade the map, then can we restore the map? We did the degrading studies with monkeys. We started mapping the brains of human subjects and saw their maps were similar to what the monkeys were. We then started working on developing a retraining program.
Some of the initial workaround neuroplasticity with regards to what we know in physical therapy. When you’re talking about mapping, for those that are not clinicians who may be reading this, in your brain, there is a representation of your hand and it’s clear and distinct, but through either too much movement with the monkeys grasping multiple times or multiple repetitions or less movement than normal, those maps change. You found that with that repetitive task, the distinct image or let’s say circumference of the hand starts to spread to other parts of the brain and take over.
It’s similar to what they found with pain. In this repetitive movement, we saw that the topography or the location of the hand got bigger than normal but the definitive, descriptive and distinctive representation of each of the parts of the hand were degraded. The receptive fields were very large and we’re no longer precisely represented. People had trouble with sensory discrimination, for example, because the receptive fields were too large. What’s interesting is that you also learned that when you put an electrode in a neuron and you keep it there for a period of time, it’s incredibly noisy that tells you the neuron is alive and well. When you put up an electrode in a neuron that is not alive and well, you get no representation of electrical discharge so it’s very interesting to see.
We had one case with a monkey and we put the electrodes on the hand part of the brain before we started to train the monkey. We knew it was precisely on the hand location and the hand is located near the face, for example. One of two things tends to happen, either in overuse, traumatic event, or even in stroke or head injury, the representation can either get too big or it can get small. In this particular monkey, we had the electrodes over the hand. As the monkey developed dystonia, that was very similar to the research we’d done with our own monkeys, but this monkey was trying to discriminate two points, whether there was 1 or 2. He got anxious and nervous about being right because he gets his food that way. What happened was that as the hand degraded and it’s a functional movement, the part where we had the electrodes over the hand that became the face.
The topography, the face expanded into the area that used to be the hand in this particular monkey, doing the task he was doing, rather than enlarging. It was shrinking the map and also degrading the representation. It was fascinating to that clear event and then to be able to show with magnetic source imaging, we could show the same things in patients with hand dystonia. We could see that the neuron was excessively firing. It was hypersensitive with too much excitation. It didn’t have enough inhibition. Once it turned on, it turned on with a huge magnitude of firing, much larger than you would expect in normal, and then they couldn’t turn it off, which is one of the things about doing EMG on a patient with hand dystonia. When you put the electrode in the muscle dystonic, the muscle is firing excessively large amplitude, and then they can’t turn it off. It takes a long time to turn it off. You can turn it off and maybe ten milliseconds and they can’t turn it off for 100 milliseconds, which explains this over-exaggerated movement, dysfunction you see in focal dystonia.
For those who don’t know what focal dystonia is, explain what focal dystonia and focal hand dystonia is, what that means clinically as far as what you might see symptom wise.
Of interest, generalized dystonia is the third most common movement disorder in the world, but it is usually related to some genetic familial risk factors. Focal dystonia, we haven’t found any genetic risk factors except the possibility of Ashkenazi, Jewish patients having a higher risk for focal dystonias. If the focal dystonia is an unusual movement disorder tends to be an end range, fixed twisting posture at that end range with or without a tremor. It appears only when using your particular limb, like hand dystonia. It’s mostly the hand that had got the dystonic movements, but we see some compensatory responses in the whole arm, not just the hand.
In addition, movement disorders only present joint voluntary movement. It’s quiet at rest. If there are normal reflexes, there is no hyperreflexia. There’s a worsening of the dystonia under stress and then when things are relaxed and stress is managed, the dystonia is less. There’s a very unusual sensory trick that is associated with most of these focal dystonias that I find something I can do to minimize this abnormal movement. With the neck, for example, we had a patient who could chew on a toothpick and when he would chew on a toothpick, then his dystonia would be less.
With the hand, if somebody puts on gloves often, the dystonia is less. If you put tape on the finger, the dystonia is less. Whereas I described before, if I inverted someone, put them upside down, the dystonia is less. Part of my retraining is to put people in unusual positions in order to start retraining. Probably it is one of the unusual movement disorders that affected by position. It’s also affected by the environment. When it’s cold, the dystonia may be worse. When it’s warm, the dystonia is less. If you go up into the altitude, some of the patients who are musicians can play well when they’re upon in the mountains and they come back to the usual altitude, the dystonia is present again.
It’s a very interesting disorder and there are some clearly psychosocial risk factors. Somebody who’s a perfectionist, perseverative and can’t stop, and phobic, those characteristics tend to be associated with the people who develop these focal dystonias. Even though when first discovered in musicians, they felt it was psychological that these people were psychotic. There was no abnormal neurophysiological testing that could be indicative of the dystonia. No therapy made any difference, even counseling didn’t help and there was a very high suicide rate in the early days of those patients who develop these focal dystonias particularly musicians. It’s not just musicians that work-related musculoskeletal disorders working on a factory line, being on the computer, being a programmer, and hairdresser. There’s another one, the golfer’s yip. These little focal dystonias are either labeled by the part affected, hand dystonia versus foot dystonia, or the task that’s involved. Somebody with foot dystonia may have a runner’s dystonia and that the running is what elicits the abnormal movement.
Musician’s dystonia or writer’s cramp somebody who gets the dystonia in writing. It’s pretty specific and there are no diagnostic tests to differentiate this movement disorder from other kinds of movement conditions. It’s not unusual that people go up to ten years before the diagnosis is made. Many of them have unnecessary surgeries, releasing techniques and they don’t get better and everybody wonders why they don’t get better. It’s a difficult diagnosis to make and physical therapists need to have their awareness of this movement dysfunction. Particularly in patients with chronic pain, but that’s not the only condition on which you would see it. I think we treat a lot of patients with cervical neck problems and they have cervical dystonia, but nobody picks it up.
Connecting what you said back to those monkey studies, you had the monkeys do repetitive tasks. You then mentioned maybe the association with certain types of occupations during dystonia. Is a repetitive injury or repetitive tasks associated with the development of dystonia?
For the most part, yes, but the risk factor may vary. In a musician, besides these personality characteristics, if somebody changes their instrument, they increase the intensity of their practice, the amount of time they’re practicing, and they try to get better. They are likely to be the ones who developed dystonia. Similarly, if somebody is doing a task and they have an injury, let’s say they’re in a motor vehicle accident, but they’re also doing computer programming, not necessarily just musicians. That trauma is associated with going back to do that repetitive task and finding your hand doesn’t work as it used to. Because they have fine motor skills, those individuals who have these dystonias the fine motor skills are still normal. It’s only this task performance that brings on the involuntary movement.
Stress is another case where you increase your adrenaline and you get faster, but you still want to go faster. They call it a loss of homeostatic plasticity. That means that I used to play the piano and I practiced a lot, played with the symphony in high school, played with the dance band, but I knew I would never be wonderful at playing the piano. I’d never make that my career because I recognize that. Even though I might work harder, I didn’t get a lot better, but that loss of homeostatic plasticity seems to be also characteristic of this development of dystonia. When you know that you’re maybe as good as you can be, your brain doesn’t stop until it starts to fire abnormally and it can no longer differentiate the individual movements, the sequential movements. It doesn’t have to be exactly the same.
Dr. Porter calls this lack of homeostatic plasticity as one of the hypotheses about the origin of dystonia. We called it a learning hypothesis. You’ve got to the place where the intensity was such that you changed the way you did it until you the control of your hand. Those two hypotheses are probably what has driven most of the intervention strategies by therapists. The other thought is that this is an anatomic neurophysiological problem of an imbalance of excitation and inhibition. If you get too much excitation, you can’t turn it off and that leads to these abnormal movements. You can find abnormalities in the basal ganglia motor, the sensory cortex, the premotor cortex, and all of these neurophysiological consequences. The question is, are they cause or effect? Since the diagnosis is made after many years of abnormal movements, I don’t think we have the answer for what is causing and what is effect.
It may not be a purely disinhibitory problem that may be as the quality of what’s happened over the course of many years.
It’s like, why does it take us so long to diagnose Parkinson’s disease? Part of trying to identify these early movement disorders, particularly dystonias, I think our opportunity to improve their performance is greater the earlier you address it. While people who are experts, I gave a talk at a running symposium and they gave me an hour to talk about a runner’s dystonia. Everybody said, “I’ve never seen a patient with runner’s dystonia.” After the conference, people are emailing me saying, “I have a patient with runner’s dystonia.” I am sure that they’d seen a lot of other people who have unusual patterns of movement, particularly gait patterns and running patterns.
Some people look like they were born to run and some people look like they shouldn’t be running. I wonder how many of those people that are awkward in their running maybe have some form of dystonia. They tend to be the ones that run a lot or run at night when there’s a little bit of anxiety, being at night out by yourself and have a little flashlight. There are a lot of variables in the environment that increase the risk of developing these unusual movements. Also, hairdressers. Have you ever watched the hairdresser and how many times they are clipping their scissors all day long for 8 to 10 hours a day, depending on what their income is? There are hairdresser’s dystonia, bellybutton’s dystonia and golfer’s yips. There is an incredible number of these focal dystonias that people haven’t put all together to say that the causes are pretty similar.
Did they coincide with the mapping in our brain with regard to this amount of sensory cortex? Since there’s more state for the face and the hand and other parts of their face, like the tongue, lips and jaw. Are people more likely to have focal dystonias of the hands and the head and potentially part of the neck or is it specific to the person?
There are a lot of individual differences for sure, but those areas of the brain, the maps of those parts that occupy a large proportion of our brain seem to be the most commonly involved. Blepharospasm is the eyelids. How many times do you blink your eyelids? If you play a horn, how much do you use your lips? If you’re a singer or a teacher, how much do you use your voice? One of the problems has been people have to move from one modality to the next. If a patient has hand dystonia, so they may be changed and become a teacher or something like that. If they’re using their voice, they might be more likely to get a spasmodic dysphonia, which is the dystonia of the larynx and speaking.
Those parts of your body that are particularly well-represented seem to be more likely affected. The foot is not a large representation, although it’s a bigger representation of the whole leg. The foot gets more space than the rest of the leg, but it’s not as common. Runner’s dystonia is much less common than the other hand typed dystonias, but you’re right, they’re all difficult to treat. Sometimes you see people who have both. I treated a physician who had cervical dystonia. She never knew that she had a problem and she was married to a physician. What was interesting is that she had a very nice way that she had no copter head to listen to people when she was taking their history, and that she didn’t look like she had an unusual problem, but she couldn’t keep her head straight.
When she got together with her friends from medical school, they said, “What’s wrong with your neck?” She said, “Nothing.” They said, “Yes there is. You didn’t use to look like that.” That led her to this whole thing about developing this cervical dystonia, at least having the diagnosis made. She also had a herniated disc. They removed the disc, but it didn’t impact the cervical dystonia, so you’ve got to be careful. I had a guy who did have Botox for his cervical dystonia, and they tried to release the extensors of the neck, so it wasn’t bothering him quite so much. His head fell down onto his chest because he didn’t have enough muscle strength to keep his head up straight. It is a scary situation, particularly for him.
On this show, we are always talking about conservative management first and to try to be a little patient with it. Go along as you can because oftentimes, as we’re talking about neuroplasticity, it does kick in and people notice functional changes that impact their quality of life. You mentioned earlier the gentleman who was chewing on a toothpick and it helped alleviate his dystonia, putting people in an inverted position or upside down helped alleviate the dystonia. My clinician mind has said, “There’s some sensory input that we can challenge or modify that may help a dystonia.” How does that relate to the profession of physical therapy and physical therapy treatment itself for dystonia?
Posture and posture writing responses are the reflexes you want to keep throughout your life. You’d like them to be sharp, responding quickly, keeping you from falling, maintaining your balance and improving your posture. Posture seems to be the central element here. Even if you have hand dystonia, most of those patients with hand dystonia do have some integrated balance problems that should be addressed. Even in the sensory retraining world and hand dystonia like writer’s cramp. For example, Dr. Bleton, who’s back in France, found that if you worked hard on posture and got everybody in a good postural neutral, their writer’s cramp would get better and people could self-correct. When you weren’t paying attention to your posture and your posture took a downhill slide, then the writing cramp got worse.
You can see that posture writing and balance is integral to all movement disorders. I don’t care what they are, not just dystonia, but that is the foundation on what you have a stable base on which you can then program the rest of your body. Even though you’re working on the hand, people say to me, “Why do I care about their balance?” The other part of that is your brain needs a ton of oxygen. In the wound healing research that we’ve done, an oximeter reading tells you a lot about general oxygen levels. You’ll find that people who are in repetitive tasks don’t drink enough water. They don’t take time to eat well. They stay up late. They don’t sleep well. They’re under lots of stress. If you did 10,000 keystrokes now, they used to post that you need to do 15,000 the next day. Lifestyle management becomes another very important part of neuroplasticity and relearning and changing the brain.
I think there are three phases to this idea of re-education of neuroplasticity. Probably the first one is making sure that people have the right medical management plan. There are people who are responsive to Botox injections. There are people who do well with anxiety medication, antidepressants and things like that. If those helped and even Levodopa sometimes can help in dystonia, particularly dystonia associated with Parkinson’s disease. The second is to prime the nervous system for learning. If you can’t relieve the stress, you’re unwilling to get a positive lifestyle, get a good night’s sleep, have good nutrition, stay well-hydrated to keep your oxygen levels up and to have a good exercise program. Even though you think you don’t have the time to do it, those lifestyle characteristics prime your nervous system to learn.
We also learned that doing strengthening inspiration, for example, will increase your O2 for normal healthy people, as well as people who are trying to retrain their brains. Remote limb ischemic conditioning is something we’ve found that does improve our motor control or our upper limbs. Even when we’re healthy and normal, we can be a little more coordinated but in case of strokes, they’re using remote limb ischemic conditioning to minimize the extent of the stroke, as well as rehab the patient after a stroke. There are lots of mindfulness training probably is one of the most important things. The third step is to retrain the brain. You have to do the most important thing first and that is to stop the abnormal movements, whether you have to use a sensory trick, whether you can only do mental practice, not the physical practice. If you keep repeating abnormal movements, you keep teaching yourself the abnormal movements.
You’ve got to figure out ways that people can stop doing that. Those people want to work. They want to have an income and want to perform. That’s probably one of the hardest things is to stop them from performing the abnormal movements and go to mental practice using imagery. Imagery is effective in activating about 30% of the neurons that you use to do a particular task. You will recruit those neurons to do that task about 30% of them if you imagined doing the task normally. That’s pretty impressive. You also have not only mapped about your anatomy, but your brain is also mapped by function. One of these issues about developing the cochlear implant is that the occipital cortex has this topography also, but it has a functional map for different kinds of hearing, different kinds of sounds.
Our functional task is you’ve got to figure out ways to remap the functional aspects of that topography as well as the anatomical segment of the topography. Those three things are necessary if there’s a medication that helps. If there is noninvasive brain stimulation that primes the brain to control the balance between ambition and excitation, all those things can do to prime the nervous system. It helps you make your brain retrain any more effective. Believe it or not, motivation, compliance, having fun, doing things that are hard for therapists to create repetitive progressive task practice, that is fun. I believe that when you laugh, you increase your endorphins and helps control your pain. It also helps improve your learning. That’s an important part of retraining the brain. We often make things boring and it’s important to make sure you encourage people to laugh and have fun and not be depressed.
If they’ve got a movement challenge for example that’s interfering with their profession, but in reality, they have a lot to play in getting better. Are we 100% in our treatment? The only type one evidence we have for focal dystonia is the injection of Botox. It weakens the dystonic muscle that needs to be repeated about every three months. There’s some new information that if you continue that kind of injection, that maybe there is some brain learning that goes along with that, if you’re also getting brain retraining in addition to the Botox. Musicians don’t tend to like to Botox because it interferes with their performance. Most of them are short-term users of Botox. For sensory-motor retraining, interestingly enough, the improvement is somewhere between 60% and 90%, whichever strategy you choose, and there are many different sensory-motor retraining strategies.
Your improvement is somewhere between 60% and 80%, rarely 100%. Although some people do report 100% cure. David Leisner, who is a guitarist who claims he’s 100% cured or this young man on TED Talk and YouTube who cured cervical dystonia with dancing, very aggressive jazz type dancing. He feels that his dystonia is totally cured. The improvement is that somewhere between 60% and 80%. The disappointing part is the patient thinks for better, the clinician thinks the patient is better, but any objective measures, kinematic measures that we can make of the dystonic movements may not show any improvement, which is disappointing.
I want to go back to that TED Talk for a moment. There’s a gentleman who had cervical dystonia who self-reports that he cured his dystonia through dancing.
He was working with Dr. Farias, who is a PhD Psychologist who claims that his neuromuscular retraining program is effective. He has even written a book and you can look up his book. This gentleman was so frustrated because he was in marketing. He needed to look together. He is a handsome gentleman, but with this neck turning involuntarily all the time, he couldn’t do his job. He was walking to work one day and he put on a headset and was playing music. As he was playing the music, he was moving. When I was listening to his TED Talk, it’s exactly the same thing, that movement and music, engage the whole nervous system. It’s not just that you’re listening, but you see people sway in the audience. You see people bobbing their heads because they’re translating that music to their own movement.
As he was walking along, listening to this music and the music got more engaging with a lot of hard sounds with a definite beat, he realized that he was walking along and bouncing along with the music and his head was in control. He said to Dr. Farias, “I think I can dance my way out of this.” He had very hard rock music that’s loud and it’s got a very definite beat. It is pretty amazing to watch it and it’s called Rewiring The Brain. He feels like that dance and his movement is what wired his brain. The same as if you don’t like to go out and run for your exercise, dancing with Nia or doing some of the tango stuff, and doing some of the rhythmic Nia, it tends to be based on neuromuscular progression and getting it to more detailed movement strategies.
There are people who do Nia and think that it’s helped their dystonia, even if it’s hand dystonia because you’re just reprogramming neuron developmentally some of these movement strategies, and then ultimately integrating them into a dancing format. It was very impressive. David Leisner has an impressive story and he has a book that came out. He has the same frustration that I do that he thinks he knows how to help people cure dystonia, but they won’t listen to it. They won’t do what he asks them to do. They say what he’s asking is not possible to be a good guitarist, even though David himself is not only a composer and a teacher, but he’s also a performing artist. He’s a wonderful gentleman who figured out his own way to say, “It’s not my hand driving my hand. It’s my brain driving my hand. I need to do less, not more, in order to get that fine motor quick responsiveness that you need in a classical guitarist.”
The other person who’s been remarkable about patients with dystonia on the piano is Dorothy Taubman. Dorothy herself passed away, but she’s trained a lot of teachers across the United States. Her son was an orthopedic surgeon and he tried to convince her that people are not going to be playing well on the piano. They use the long finger flexors and extensors, but rather using the intrinsic muscles of the hand to stabilize the hands so that the fingers can move more smoothly and easily and performing the task. She has some wonderful training tapes as well.
I’m sure there are lots of lessons from that TED Talk that when you watch it, your physical therapy mind is flashing red light saying, “There are a lot of things we can take from this video and this story and apply it to clinical practice.” Even with music, some practices do play music, but this particular gentleman found a particular imagining song or type of music that probably changed the context of his disease process and condition.
I’m sure it was reprogramming. There’s no question that he had managed to then balance inhibition and excitation where before, there was this overexcitation and he could not figure out how to balance that. The problem is the imbalance in neurophysiological processing. It’s as important as the anatomical things that we describe and certainly, the magnetic source imaging, which is a dynamic process, looking at how your brain responds to a stimulus. Even David Leisner said, “I don’t have a sensory problem.” I said, “All you did was sensory retraining to retrain your hand dystonia.” He said, “What do you mean?” I said, “You spent hours feeling every string on his guitar,” the thickness of the string, had every finger touch that string and find out what the tension was on the string to produce the sound on different parts of every finger. He’s not playing the guitar but in fact, doing the sensory retraining. He’d never thought of it in that way.
Sensory is the input system and motor is the output system. Sometimes, as physical therapists, we’re focused way too much on the motor output, when we should be talking about the sensory input. Braille reading, braille cards, I get people to buy braille cards. I have men who said, “I’ll never learn to read braille.” I said, “We’re going to play Poker. You’re going to have to bet some money and you’re going to be blindfolded. If you don’t know how to read your card, you’re not going to know how to bet your cards.” That was inspiring particularly to a man to say, “I’ll figure out how to at least read these playing cards.”
Most of the time, I am seeing people have a very hard time learning braille. Dr. Zeuner has done a lot of work on braille reading as a treatment for patients with hand dystonia that have writer’s cramp in particular. When people are quiet, they’re controlled and stress is managed, they can write pretty well following every training program. When they get stressed, then there’s that imbalance. I have a patient who was interviewed. The way she maintained her ability to play the piano by her dystonia was to do braille every day. She did braille for 30 minutes in the morning and she’d braille at night. When she would do that, she could perform beautifully. You would never know she had dystonia.
Is that because it’s different sensory input than what she’s typically doing on a daily basis?
I remember most of the braille reading is sensory. You drag your hand over the letters, but there’s very little movement. What you’re training is the graphesthesia stereognosis type information. That sensory and reorganizing of the sensory inputs drives better motor output. You can’t improve motor without really addressing sensory. The motor cortex has the same change in topography as the hand, so it loses its precise and distinctive representation. It’s harder to measure motor topography as to measure sensory topography, because the sensory cortex is the primal area and it’s fairly superficial. We did try to map in the monkeys with hand dystonia and even in a monkey, which is a lot smaller than we are, the thalamus is very deep. It’s hard to map the thalamus, but people are getting better at it. We got better at the task, but also that topography is disorganized, the thalamus as well as the cortex.
Are there lessons here we can apply to other types of diagnosis, things that may sound or look similar to Parkinson’s disease?
There’s a sensory processing problem with patients with Parkinson’s. They do better with the sensory aspects of their program and additions to the motor. They do better with dual tasking because we know that cognitive attention is essential for brain retraining. You must be attended to the task. It must be repetitive. It must be progressed in difficulty and carried out over time. It has to be engaging, so you’re willing to do it. I ran a Parkinson’s group at UCSF and we had everybody on the AlterG. Everybody was running and simultaneously, they were either doing crossword puzzles, they were catching and throwing balls or solving lateral puzzles. They were doing what I called the dual-tasking with a cognitive element. At the same time, they were doing a motor task. It was difficult for them to do overground.
In the AlterG, you can unweight people. You’re not going to fall because you’re unweighted with air and you’re in a little capsule. You feel confident that you’re not going to fall, whereas if you’re overground, you can potentially stumble, fall and hurt yourself. There are sensory processing. We wrote a paper about that back in 1990. That was the first time a lot of the neurologists had looked at the sensory processing part of Parkinson’s disease. Certainly, the issues of imaging and some dystonic movements in patients with Parkinson’s that develop these unusual and range posturing problems very similar to dystonia are sometimes in response to the dopamine over a long-term. All of these tasks, this sensory-motor processing, graded motor imagery are good for patients with stroke, MS and Parkinson’s. I’ve kept people with ALS living longer and I had a couple of emails from the old patient family saying, “How are you?” because I kept their people at least independent until the disease took its major toll.
Parkinson’s disease has a neurodegenerative component too, and you can address that by trying to increase attention and down-regulate dopamine. There are even some people like Mike Merzenich who think you shouldn’t start dopamine early, but instead increase attention and drive cognition to up-regulate dopamine so that the patient has the dopamine they need to stay healthy and not depend on external dopamine. Unfortunately, there are no randomized trials on that particular theory at the moment, but it makes sense. It’s logical.
I’m glad you brought the sensory component into the talk because I think you’re right, as far as the profession goes is at least physical therapy, we are very motor driven. We learned about a lot of sensory integration more like the developmental stages in children, adolescents and babies. I think somehow, we lose it in midlife and then it seems like we pick it up again in later life, but it needs to be a throughline with no matter who you’re treating in some ways. You’re talking about in some ways complex movements. Often in the physical therapy clinic, you may see straight, plain, basic type movements that don’t have great functional carryover.
It is tough in the current world of therapy to have people come to you long enough and for a long enough period of time for each treatment, not just fifteen minutes that you can do this integrative study. I have a patient who’s had a motor vehicle accident with a severe concussion and significant brain damage. I put on finger vibrators because she has her fingers vibrating. I do this remote limb conditioning with the blood pressure cuff. I don’t know if you have ever done that. You take the blood pressure cuff up to 20 millimeters above their resting systolic and then you keep it there for five minutes on and five minutes off and you do five series. I do that and at the same time, we’re working on some of the musculoskeletal issues that she has relative to her knees and so on.
We’re even working on balance. I take off the remote limb ischemic conditioning, but I try to keep on the finger vibration. While I work in distracting her neck or doing some manual things to her neck, she is reading braille cards. You can combine these things and everybody is looking at us. The therapists that I work with volunteering in his practice laughed and everybody looks over and they laughed. The next thing you know, they’re asking if they can try these things as well. You can minimize the time it takes, but it takes some creative problem solving to do all elements. I do a lot of games. My patients are working on integrative balanced by playing a racket game. I try to have them come early before the clinic is too full. Then patients come in and say, “That looks like a lot more fun than what I’m doing.”
I think there are ways to integrate it, but it does take thinking outside the box. It’s like Mosley and his application of these techniques and his graded motor imagery. Part of that came from the documentation that we showed that you can change the topography and reinforced. His view was some of the work that’s been done with imaging that shows that you do activate these different parts of your brain with graded motor imagery, mirror imagery, Ramachandran and then his phantom limb pain and how to get rid of it using mirror imagery. I do all these things with my patients with dystonia and they can do them at home if they’re willing.
You need to get the family involved. Everybody needs to carry a positive attitude. The only people who get better are the people who think positively that they’re going to recover and are willing to do the training. People say, “How much training do you need?” Carolee Winston talked about how many repetitions you need. You need hundreds of thousands of repetitions to change the brain and people don’t realize that it has to be done on a regular basis. Most people would say that if you’re going to improve significantly with dystonia, it’s going to take up to a year and that you’re going to need to be working on it every day. At least part of the day, do some of these retraining strategies and not performing the tasks that caused dystonia because then you’re undoing everything that you had started to do.
People can teach, but they’re frustrated if they can’t demonstrate what they’re teaching on the piano. You have to change the techniques at the computer and the keyboard and people need to move from the shoulder to the elbow using rotation and intrinsic muscles and stop the heavy-duty tapping on the keyboard that we used to use on the typewriter. The typewriter didn’t allow that many repetitions. If it was a regular typewriter, you didn’t see these kinds of dystonia. It only became evident when we moved to the computer keyboard and the repetitions can be quick.
I’ll tell you a quick little personal story. I haven’t realized it until we spoke. When I wrote my book years ago, I sat down for two months. A big chunk of my life was dedicated to that book so I spent hours on the computer typing, thinking, typing stress. At the end of the certain days, my left pinky would oftentimes be twitching on its own. When I listened to you talking, it’s probably the beginning of the seeding of what could potentially be dystonia under the right circumstances in the right conditions. My life wasn’t very stressful at that point, but still that you mentioned an old typewriter is slow-moving, but on these new keyboards, you watch kids on phones with their thumbs moving multiple repetitions every couple seconds.
It’s pretty amazing and it has an impact. It’s that reverse neuroplasticity that retrains in some ways where it’s the dark side of neuroplasticity if you go. I think what you’re saying about, and this is what I would love to get an insurance company to understand with regard to physical therapy and providing effective and better care for people is that neuroplasticity takes time. I may need a couple more minutes with a patient or maybe a couple more visits spread out over the course of six months, rather than giving me seven visits squeezed within only 30 days. That may not be a good use of my time with regard to leveraging neuroplasticity.
If you haven’t read the book by Krakauer about stroke recovery, the frustrating part is one of the major issues is that recovery takes time because you do reprogram the brain. Compensation is what they allow us to do. They give us only enough time to develop compensatory strategies to get people out of the hospital sooner with a stroke. I think we train in the specificity on a stroke patient who doesn’t have enough voluntary motor control of the lower limb, but we got to get him to the bathroom and we got to get them up and walking. We train in spasticity because it is the only way that they won’t collapse. Similarly, we teach them to feed themselves and do everything they need to do with their unaffected side. They’re not going to give them enough time for PT that we can retrain the hand by forcing them to use it and driving that recovery as opposed to compensation.
In this book, recovery takes time, effort, commitment, imagery, and cognition. It’s been shown that extra general aerobic exercise creates a positive element for brain retraining because it increases dopamine, the oxygen delivery and makes it possible for the neurons to function better. Mike Merzenich is someone who’s argued with me on panels about physical exercise and we’ve come to realize that there are two kinds of exercises. One is brain exercise and the other is physical exercise and the best combination is to do both at the same time. While you’re doing your physical exercise, you should be learning.
If you do those two things together, then the contributions to your overall wellbeing and recovery are greater. In our last conference together in 2019, he came to the reality that physical exercise was more than he had given it credit for particularly if it was associated with cognitive brain training. Everybody needs to remember that so people shouldn’t be just riding a bike or running, but they should be learning and listening even to podcasts or something while they run. Most people listen to music, which is not a learning-based activity, but if it helps you run better, I guess that counts because it is an element of dual-tasking.
To reframe that for our profession, people reading are thinking, “What does a physical therapist do?” People would say, “A physical therapist retrain your moving,” but you’re saying that a physical therapist retrains your brain, which then changes your movement pattern. That’s an important distinction that everyone in healthcare and even patients need to start to understand more deeply. I think they will appreciate physical therapy and what we do as a profession even more, rather than the idea of “physical exercise.”
Dr. Hensley has written several papers on dystonia. He believes that if you would identify areas of intrinsic weakness or imbalance in the hand, maybe limitation in range of motion, in strength or your anatomic connections and your collagen tissues are not flexible enough to allow you to do what you want to do. He believes that if you address these biomechanical issues, the range of motion, the strength and the movement pattern that you’re looking for that’s healthy, that you could prevent these dystonias and repetitive strain injuries. Unfortunately, in all of the research on focal dystonia, there are no large randomized clinical trials. They’re all small trials. Some of them are certainly randomized but they’re small numbers of patients. Many are case series, case reports.
The weakness in determining the effectiveness of what we do has been limited by the small trials, but the most important thing is all the behavioral brain training strategies that are out there that you’re certainly encouraged to try, implement, and integrate that best fits your patient, there are no adverse effects. It’s not like having deep brain stimulation. It’s not like even noninvasive brain stimulation. It is only the possibility of making yourself better. That should be strong enough for everyone to be willing to try it and they can add biofeedback, which helps or braille training. They can do mirror imaging, graded motor imagery. They can learn based task-specific training, forced use. They can use robotics to get the repetitions to control the abnormal movements, if necessary sensory tricks.
All these things lead to at least some improvement to about 80%, but the better we understand matching the treatment to the patient, engaging that patient and treatment at home. That’s one of the most important things we can do. With this shelter home, I have a couple of patients who need encouragement. A couple with the concussion injury patients and Parkinson’s. I called them on the telephone, but I’m not charging. I called them and remind and talk to them, how they’re doing, what are they doing? I sent some home exercise programs that I knew a family member had a problem and they could do the exercises together. It takes a little more intuition to work well with the patient, even though you may not get reimbursed for that. Even though we can get reimbursed for Telehealth, that is only temporary. More legislation is necessary to allow us to do billable Telehealth after this pandemic is over.
Support and motivational factors are such a key ingredient to everything we do as physical therapists. Before you go, I have two quick questions for you because you’ve been in the profession for many years and you’ve seen a lot of things and you have your wealth of knowledge. What do you think is missing from the physical therapy profession? What do we need to do to improve our profession to elevate it to the status that it deserves?
Without being insulting, I think elevating our entry-level program to a Doctorate has encouraged people to come into this profession because they want a doctoral degree, but it is not necessarily associated with people who are sensitive, who care about people, who are willing to do what’s necessary to make that and address the individual differences of the patient. Go beyond the usual. We’ve lost a little bit of that sensitivity of what this physical therapy is all about. It’s about people and it’s about caring. It’s about helping people learn to discover their own strengths, so that they can be compliant and work towards getting better. The second thing that I think has occurred is they control the concern about money and control of the insurance company and deciding what a patient needs. It’s not just about therapy but about medicine and surgery, rather than knowing what the basic principles are and being willing to fund patients to go through a reasonable therapeutic period. That interferes with our effectiveness.
Most importantly, we need to encourage exercise. It’s the best health management strategy. It’s better than any medicine. I remember the surgeon general coming and saying, “The best medicine in health care is exercise.” Exercise is a movement is the foundation of what we do, but movement and retraining movement requires understanding individual from being able to motivate people to know they can get better. Also, to be convinced that even though it’s hard and maybe painful, what can I do to monitor and minimize the pain for recovery? Sometimes we’re minimizing treatments that we have shown to be effective. Interestingly enough, nobody does ultrasound anymore. You can teach people to do their own ultrasound. It’s something you could have in the clinic, but ultrasound increases the oxygen delivery to the wound and it does increase healing and control pain.
People can buy TENS units now for $50 and it is a nice way to manage pain so I can do the exercise I need. Pain is inhibitory and we need to provide not oral medications to manage pain, but physical modalities. Vibration is another wonderful thing and using these finger vibrators, for example, to decrease tone and increase people to move better, like with Parkinson’s disease. They’re doing a wonderful study on this finger vibration at Stanford. We need to be open to the fact that there are physical modalities that can help patients manage their pain and work at home alone to engage in the activities we think they need. It’s about caring first.
It puts together art and science, which our profession is very much an art and a science. We need that perfect balance. I think you’re right. I graduated school in 1997 and there’s been that definite rapid shift toward more science, more evidence. Now, we have all of that and that’s great. We’re seeing, “What happened to the more touchy feel, therapeutic bond relationship?” That part got pushed a little bit to the wayside so I do think you’re 100% correct that a skillful clinician has both and some things are difficult to teach action.
Some people can’t learn it.
I’ve seen them many times. I can’t let you go without telling everyone how they can stay connected to you and all your great information.
My email is BYLN@UCSF.edu. You can go online to the Department of Physical Therapy and we have Science at UCSF. My biography is there and some of my research studies have been summarized there as well.
If you can’t find it online and Google searches come to the IntegrativePainScienceInstitute.com, find this episode. I also want to mention that the brains in this family continue generation by generation because your daughter, Carolyn, is a great physical therapist and has been on the show twice. It’s been handed down through the family, so it’s good. It’s great to have you here and I do think your research is pivotal and you have such a great blend of educator, clinician and humanitarian because you’re looking at people who want to get better and live better. “What’s the best way I can serve these people?” There is the neuroscience aspect, but where’s the humanitarian aspect that you’ve given someone to call during COVID and saying, “How are you doing it? You can do your exercises,” is a big portion of it. I appreciate you bringing that to the show.
Also texting is another one. My patients text me all the time and I text them back. It’s their way of connecting even though we can’t be together personally. I also didn’t mention that dystonia is usually painless so the issues that are transferable between pain and movement dysfunction are fascinating because they are all connected. If there is pain with dystonia, it’s usually the cramping pain that goes along with muscle excitation, but pain is not the primary feature of focal dystonia and that’s why it’s missed.
Make sure to share this episode out with your friends and family on Facebook, LinkedIn, Twitter. Maybe there’s a Facebook group where people have focal dystonia or clinicians are looking and they’re interested in the neuroscience behind dystonia. There is great information here if you read this episode. Share with them all the research that has been completed over the course of years to continue to it. I want to thank you for being on the show. We’ll see you next time.
Thank you. I enjoyed it.
- Dr. Nancy Byl
- Combined Sections Meeting
- Dr. Farias
- Rewiring The Brain – YouTube
About Nancy Byl, PT, MPH, PhD, FAPTA
Dr. Byl has been a practicing clinician in physical therapy for 56 years She assumed leadership as Department Chair and participated in academic development, teaching and administration in the UCSF/SFSU Graduate Program in Physical Therapy. As a researcher, she transitioned from animal based models of wound healing and overuse syndromes to clinical research studying the etiology of focal dystonia to applications of rehabilitation technology and learning based intervention strategies to facilitate recovery of function in patients with focal dystonia, CVA, PD and brain trauma. Working with collaborators in neuroscience, we designed an animal model to study the etiology of focal hand dystonia and created a paradigm shift in the understanding of focal dystonia as a case of neural maladaptation of sensory and motor processing. Using imaging techniques, we demonstrated that learning based sensorimotor training for patients with focal dystonia not only improved sensory discrimination and accuracy but modified the topography of the sensory cortex, improved the neuronal firing patterns to be closer to normal as well as improved motor control. She has consistently provided consultations, direct patient care, group exercises and classes of intensive exercise for patients with PD and FHD. Dr. Byl currently serves as a volunteer faculty member in the Osher Learning Center, University of Nevada, Reno and volunteers as a clinician in the Boyd Etter Physical Therapy Practice (PTN) in Reno. In California, she continue to serve on the Education Committee, Chair the Quality Practice Committee and serve as President of the PT Fund.
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