Were you predisposed to have dystonia? Understanding the patients’ neuropsychological profile

Joaquin Farias PHD, MA, MS

Up until now, primary dystonias have been studied within the framework of an acquired brain injury. For this reason, its prevention, and even its cure, have been considered impossible. Could it be that we have been trying to analyse dystonia from the wrong angle? Perhaps it can’t be cured because it is not an illness, in the same way that autism cannot be cured because it is a condition, a different way of being, of perceiving, living and feeling.

The Dystonia Neuropsychological Profile

Do dystonia patients have personality characteristics in common?

In the 900 patients evaluated during the creation of this book (Limitless, How your movements can heal your brain.), many similarities in their personalities can be observed.

It’s quite usual that dystonia patients have close family members with functional autism or ADHD.

I do not agree with defining my patients as dystonics. What defines them is their personalities, which themselves are very special. People who develop dystonias are hypersensitive, brilliant, impulsive, and have great determination. Among the people affected by dystonias we find United Nations politicians, surgeons, athletes, Olympians, company presidents, dancers, famous musicians, artists, and writers.

If 10 million people affected by Dystonia exist in the world, it is because those genes have reached us, because millions of individuals have survived with them or because those genes were the secret to their survival, and ours. Every way of being and existing, every interaction, represents the end of a fortunate story that has been able to cross the tunnel of time to win a place in the present. People affected by Dystonia are very physically special. Their muscles, tendons, and ligaments are stronger and more resistant than normal. Their bodies can stand enormous muscular tension; in some cases they don’t even stop to sleep, without damaging effects. They are gifted with great reflexes: from being hyperactive, the slightest noise wakes them and prepares them to fight or run at a moment’s notice. There is not the smallest chance that a primitive dystonic would be caught by surprise by a tiger. Their obsessive and distrustful personality wouldn’t allow them to let their guard down for an instant. They would make the perfect watchmen.

It is also probable that they were great hunters. My clients tend to stand out in resistance and strength sports. One of my clients who was a computer programmer decided at 38 years of age to ride mountain bikes. Within two years he had become world champion in his category. His is not an isolated case. Many people affected by Dystonia improve by competing in marathons, triathlons, and even Iron Man or extreme Iron Man competitions. Weightlifting is another thing that they also not only enjoy, but often accomplish at above-normal levels. There are dystonics in the NHL, NBA and the Grand Slam. Musicians like Yehudi Menuhim or Glen Gould, who had exceptional coordination, suffered from dystonias, but perhaps it was their special brain structure that allowed them to complete these feats of motor coordination as no one else could.

People affected by Dystonianot only stand out in physical activity, but also in the arts and sciences. The composer Robert Schumann, who is considered to be one of the oldest recognised cases of dystonia, was enormously creative, and just like many other great composers, when he started something, he couldn’t put it down until he had finished it. He was also affected by severe depression during his life.

People affected by Dystonia also tend to be daydreamers. They don’t pay attention to what doesn’t interest them. When they become interested in or passionate about something, they can engage in levels of extreme concentration which they retain for long periods of time, which sometimes allows them to reach great heights of creative genius. This quality frequently allows them to stand out in whatever they take on. There are no limits to the levels of involvement they put into a project. Their perseverance makes them achieve whatever they attempt. Their hypersensitivity and attention to detail make them good analysts. Many dystonics work as musicians, linguists, code analysts, lawyers, judges, and journalists. Any solitary activity related to an ability to pay attention to detail, analyze patterns, and look for analogies can be suitable jobs for dystonics. All these qualities also have a counterpart that can become a problem. Their extreme sensitivity can cause them to suffer from depression or fear of leaving their home. They prefer intimate settings with just a few people and suffer from social anxiety when they are in large groups of people. Their hypersensitivity is not just emotional, but also sensorial; bright lights, noises, and unexpected movements can all make them dizzy, anxious, or even panicky. Sensitivity might be a good quality for an artist, but it can also be a handicap if the person has to live in a big city, work in customer service, or take on a position of great responsibility.

The same quality that allows people affected by Dystonia to concentrate so deeply is linked to a tendency to ignore anything that doesn’t interest them and can become obsessive or compulsive behaviors. Dystonics have lived in a permanent state of anxiety since they were children, which is why those who seek respite in drugs and alcohol are susceptible to becoming addicts.

The motivation that drives them to fight against everything and everyone to defend their beliefs can make them cognitively rigid, not allowing them to abandon a project or a marriage when clearly it has no future. Their impulsivity when feeling attacked or misunderstood can make them become aggressive. Their extreme attention to detail makes it hard for them to pay attention to the larger context, to the total vision, or globality. Their hyperactivity can make them careless because they want to read or write more rapidly than they really can. They might skip words or deform their writing to the point of illegibility. This lack of patience in completing movements is also a lack of patience in accepting the passage of time or in being able to wait for events to move at their own rhythm. They look for shortcuts, solving problems as fast as they can, making use of their talents and becoming frustrated when they have to wait because they are not able to find a solution. They can become trapped in a dynamic of instant gratification, a condition they become accustomed to in their youth due to their cognitive and physical abilities. Sensory stimulus or emotional experiences that would be difficult for other people to assimilate are enormously difficult for them and can take them into states of shock where they cannot react. Their tendency for cognitive rigidity can make those states become perpetual, providing them no assistance in overcoming their fears.

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Dystonic individuals in ancient history

Interestingly some historic figures of the past could have been affected by dystonia. It is possible to re-examine ancient historical sources in the light of modern medical knowledge in an attempt to retrospectively diagnose the causes of the troubles and pains of the our ancestors.  It has been noted that the Roman emperor Claudius had a shaking head, he could be suffering from a Cervical Dystonia. In most of the sculptures made of Claudius his head is not aligned and a clear torticollis to the left or laterocollis position is depicted. Some researchers have suggested that Julius Caesar may have suffered a hand Dystonia.

The statues of Alexander the Great sometimes display an unusual neck position, leading to speculation about the possibility of him having ocular torticollis. However, this theory may be an exaggeration as not all statues show this posture, and historical texts describing his appearance are often unclear. Plutarch mentioned that the sculptor Lysippus faithfully depicted Alexander’s slightly tilted neck.


Alexander the great. Portrait Head.

Is the brain of a person affected by Dystonia different?

Multiple neuroimaging investigations have revealed significant changes in both the microstructure and functioning of the brain in individuals afflicted by this condition.

Genetics vs accident. What if both hypothesis are true?

Brain lesions are widely acknowledged as a contributing factor to dystonia, and numerous studies have proposed that maladaptive neuroplasticity is responsible for the development of dystonia, particularly in cases of executive dysfunction following vascular brain injuries. The processes leading to adaptive and maladaptive plasticity are not yet understood, but they constitute an active area of research.

It maybe possible that the genetic structural differences present in the brain of individuals affected by dystonia make them predisposed to suffer microvascular accidents which can lead to the onset of the physical symptoms of the condition such as tremors and spasms.

If this hypothesis is true, people affected by dystonia would need to be specifically followed in regard to their vascular health, which is rarely done at present as the focus is to be followed by a neurologist, as opposed to a more suitable cardiologist or stroke specialist. In my opinion a properly designed for Dystonia, neuro-rehabilitation protocol should be offered to all patients diagnosed by dystonia the first day after the diagnosis as it is currently offered to stroke patients.

A wish for the future

If rather than being an illness, dystonia is a consequence of a shock (we do not know if the shock is just an interruption of function or due to a structural damage at this point) in an especially sensitive person, dystonia can be prevented. If children who have a condition of hypersensitivity were identified and were treated appropriately. If they were not expected to be something they are not. If their enormous potential were recognised and developed intellectually and physically. If they were helped in developing patience and organisational skills, and in recognising that their weaknesses can make them stronger. If they were to feel understood and part of a community of equals who would be able to accept them as they do everyone else in society just as they are without trying to change them. In such a world perhaps it would not be necessary to treat ten million people in shock, who live in a permanent state of suffering, who feel isolated and misunderstood. Who feel mistreated by a medical system that wants to help them by mutilating their bodies,  anesthetising their minds with sedatives, invalidating their voices and defining them as dystonics. Using the name of the disorder to identify them as if the name defines them, separates them from those defined as normal. As if that separation actually existed.

If we remove the genes associated with dystonia from our biogical legacy, we would lose forever the possibility of having solo dancers, physics geniuses, elite athletes, writers, painters, musicians, architects, or visionary scientists.