(In a tiny but charming flat overlooking Oslo from the south, in a sparingly decorated but cozy living room two young men are sitting down in a sofa with a cup of hot tea. They are dressed casually in shirts without buttons and regular jeans. The light is dim and outside is a shade of darkened blue as it is settling into a Norwegian winter evening. One of the men is trying to turn on a small microphone, getting ready to start a short interview)
[Espen] (slightly nervous and excited) Dear Lars, welcome and thank you for agreeing to do this interview on movement and dystonia with us today.
[Lars] (calmly smiling) Thank you for inviting me.
[Espen] I promise it won’t go on for too long. Could you please just start by presenting a short chronology of your onset of dystonia?
[Lars] Of course. I am from Norway, around the Oslo area. I started playing piano when I was five. Apparently, I was fairly talented, but I didn’t receive any professional training until I was 19 years old. I studied in Trondheim, Copenhagen, Montreal and am now hopefully completing my third and final master’s degree in music performance at the Norwegian Academy of Music in Oslo. That concludes 14 years of professional training.
I can remember the onset of dystonia from back when I was still in Montreal working on Schubert’s Impromptus for my final exam. The second Impromptu has a lot of scales in it and for some reason, whenever I used my index finger on a black key my fingers would stumble. Of course, I didn’t think of dystonia back then, I just thought I was messing up and changed my fingerings. This was in April 2013.
After returning to Oslo my symptoms got worse. I didn’t realize it at the time but as my dystonia intensified my hands and fingers adapted to the subtle changes. My musical abilities were slowly declining, and I kept thinking that I was to blame; I thought that I was doing all the wrong things. At some point, however, my involuntary contractions became very visible and I understood that the gradual deterioration of my pianistic skill was not my own fault. This was the fall of 2015.
At this point I started looking for answers. I sought out my friend Tina Margareta Nilssen, the founder of Timani (www.timani.no), and she started giving me pointers on where to look. I started with a wonderful physical treatment by an excellent chiropractor. But after six months it was clear that this was not useful to me. Then, when it finally dawned on me what my situation really was, I completely broke down. This was the summer of 2016.
I then completely quit playing the piano. I halted my study program for a year and I started teaching full time. And then, suddenly and unexpectedly, I was happy. I was free. I had money. I had weekends for the first time in a decade. I felt as if I had escaped from prison. I realized that work and love is not a healthy mix. If your love turns into work, then you have lost yourself. I started my Timani study program. I learnt about the body. About muscles and how they work. And how we tend to ignore them. I started training my posture, my breath, my mind. I had direction.
[Espen] So sorry to interrupt but what is Timani?
[Lars] It is an anatomy-based coordination retraining method applied specifically to musicians. Very up to date and solid. It is a young project but growing fast. And it is centered right here in Oslo and the founder is my wise old friend. Sometimes there is luck.
[Espen] Excellent. Please continue.
[Lars] Not much more to say. In the spring of 2017, I went to visit Dr. Joaquin Farias (www.fariastechnique.com) in Toronto with Tina’s encouragement. He explained dystonia. Like, he gave me a roadmap. He is still the only person yet to make any good sense of what had happened to me. And he gave me a set of very simple but powerful exercises. And with that my retraining began.
[Espen] And what are these exercises like, exactly?
[Lars] Well, according to Dr. Farias, in my case of Focal Dystonia there is a functional paralysis in a simple movement of the affected area. A functional paralysis is a loss of movement without damage to the structure, such as your bones, nerves or tissue. Because all movements are dependent on each other this loss will impose a complex compensation pattern that feels natural but is dysfunctional. When utilized over a long time it will take over as primary function.
[Espen] All movements are dependent on each other?
[Lars] (smiling broadly, clearly excited to expound) Yes. When you move your finger, you don’t just contract the muscle that operate that particular joint. You also need to regulate opposite movement with the antagonist muscles and you need to stabilize the joint in question, and all the other joints of the hand, with the surrounding 40 different muscles associated with hand function. Movement is dependent on other movements. Meaning that if just one of these functions is out to lunch the entire operation will be damaged.
Pretend for a moment that you cannot move your knee. It is frozen in a random position. Now you cannot walk. But because of a system of compensations you can still limp.
[Espen] (slightly overwhelmed) I see. So, movement isn’t very easy at all?
[Lars] Not in the slightest. It is hilariously complicated. Especially if we start talking about the variation of muscle intensity, sequences and movement modulations in the brain. Everything requires constant attention and the autonomous nervous system accomplishes this with incredible ease. The brain is amazing!
[Espen] It definitely is! Now, what is primary function?
[Lars] When a pattern is primary function, it is the go to option for tasks associated with the movement. All other options will feel awkward. Thus, the brain will want to use the dysfunctional pattern instead of a normal pattern even if the normal pattern is accessible. The normal pattern will feel awkward. The dysfunctional pattern will still feel normal.
If we return to your limping. Say you’ve been limping around for a year. The brain would have habituated to the situation and assumed that the compensation is working. But suddenly your knee is fine, and you can walk normal again. For a while walking will feel very strange, maybe even unpleasant.
The exercises are specially designed to wake up and activate original movement reflexes, those that we learnt as babies, and to train the brain to use them as piano playing movement patterns. And ultimately, over a great deal of time, to override the status of the dysfunctional pattern. This is dependent on neuroplasticity. Which just means that the brain is changing structure.
[Espen] Wait, what!? You have to change your brain?
[Lars] (laughing) Essentially, yes. But it is not magic. Plasticity just means that the brain can change. And it does so to everyone at all times whether it is transforming or learning or just ageing. Neuroplastic retraining, or adaptive plasticity, means that we are asking the brain to make it change specifically to our desired goal. The process is very lengthy and requires patience. Lots of patience.
[Espen] So, you just have to do your exercises for a really long time and you should be fine then?
[Lars] Yes, in theory. But the brain has many faces. After a while of doing the exercises regularly I was starting to feel some improvement, but I was also slowly hitting a wall. I was having mood swings, depressions and sometimes panic attacks associated with the training. Coping through Qigong, meditation and mental coaching just wasn’t enough.
[Espen] You were depressed?
[Lars] (expression suddenly shifting to serious) Oh yes. I have had social phobia my entire life. I never took it seriously because nobody else took me seriously. I assumed I was “introverted” or “shy” or “needed a lot of space”. But I have to isolate myself just to breathe because every single time somebody enters the room my brain freaks out. And that has molded my persona.
Avoiding taking my mental health seriously has led me into anxiety, alcohol abuse, sleeping disorders, depression, short panic attacks and a terrible difficulty forging meaningful connections to other people. Funny how much you can suffer without making resolve. Or without noticing that you are suffering.
[Espen] (encouraging) No, but Lars, that doesn’t seem right. You’re very outgoing.
[Lars] When you meet the festive and outgoing Lars, prompting a new round of drinks, telling long and extraordinary tales of his past or excitedly making the silliest jokes, then you are meeting a performer. He is an actor performing for an audience. And he is excellent. Notice that he occupies the entire stage and he requires to dominate the audience. He doesn’t react well to challenges. And he doesn’t play well with others. But when given the space he will seem completely on top of the world.
This is a survival mechanism. And it is exhausting.
[Espen] Like a disguise?
[Lars] Exactly like a disguise. Nobody meets me. Not my mother. Not my lover. Not even I meet me.
[Espen] So, then what did you do?
[Lars] When I was facing difficulties with my retraining I was really facing myself. I wrote to Dr. Farias to ask about it because it was crippling my recovery. And he gently explained that when recovering function anxieties are normal. And I found myself at yet another crossroad.
Once again, it was my friend Tina who guided me in the appropriate direction. Since December I have been seeing an incredible psychiatrist whose name is Dr. Pradeep K. Chadha. He lives in Ireland and specializes his very formal psychiatric treatment on healing the emotional mind through techniques borrowed from meditation practices. He prompts the mind to heal the mind. And it really works.
After a few months my retraining has become much easier and I am now making rapid progress.
[Espen] So, you feel there is a connection between your anxiety and your physical problem?
[Lars] (dissatisfied) Not quite.
Let me try to explain this. There is no mind-body “connection”. Because it is really just the same thing. For some reason people don’t seem to get this. Our parts, however dissectible, is one singular living organism. We are not connected parts. We are unity.
Sort of like the earth. It is not connected nations. The nations are a dissected planet.
The same thing goes for the brain. What is neuroscience? The study of brains. What is psychiatry? The study of brains. The two are not connected, they are the same thing. The feeling of abstractness that we call consciousness is a physical and tangible thing inside the brain. That you can pick up. And the squishy grey matter bun of neurons firing signals to other neurons to create enormous information networks gives off the abstract sensation of doing simple calculus. The abstract is physical, and the physical becomes abstract. Your abstract sensation of thinking is your mind at work. Your mind at work gives the sensation of thinking.
[Espen] (clearly confused) Err, um, so, dystonia is both mental and physical but those two are the same?
[Lars] (sighing) I knew this would fail. First and foremost, I am not classifying dystonia; I am not a medical researcher. I cannot heal your dystonia; I don’t know how to. I cannot solve dystonias, and I am not trying to. All I am doing is telling the story of my experience. If it is confusing it is because it is confusing to me too. My dystonia is my dystonia. It is me. My anxiety is my anxiety. It is me. My treatment is my journey. Your journey is different.
Several movement experts of the world say that “movement is the language of the brain”. Everything is movement. Every action in the brain has a movement associated with it. Emotion is movement. Thought is movement. Subtle movement. Without movement there is nothing.
So, when a function is spontaneously frozen by the basal ganglia the brain is trying to say something. It narrates to me the story of a child who was so afraid of people that he refused to grow up. It reveals to me that the boy has been running. Running into practice rooms. Running into bars. Running from country to country. And running into a great big wall. It instructs me that the boy cannot run anymore, that it is time for him to face himself and to transform. This is the rebellion of the body.
I have decided to believe that my dystonia and my anxiety, as well as my alcohol abuse, my excitement, my melancholy, my posture, my iris, my breathing and my most intimate thoughts – everything that makes me – are the same thing. Unity.