We need new thinking in dystonia because the treatment of this very troubling condition must improve. This means that people suffering dystonia feel that they are getting better. The same can be said for all conditions that are viewed as persistent, as our understanding moves forward, creating new approaches that must be based upon science. One areas of particular interest that I believe will be highly influential, is the science of consciousness — what is it to be conscious? What is it to be like something?
The patient’s lived experience is something we seek to gain insight into as clinicians so that we can shape a forward trajectory characterised by less suffering. I would argue that this is an approach that we should be taking for all conditions. We may have an injury, a pathology, a disease or a pain yet we can always seek to reduce suffering in a number of ways by taking a broader perspective and look at the causes of suffering that are not directly related to the condition. This could be termed a whole person approach or a sociopsychological approach with a minor contribution from the biological dimensions — is it useful to understand the molecular biology of pain or to know what action to take to feel better? I would argue the latter. To feel better we may need to foster relationships, communicate, move, create a new habit, consider financial or occupational matters, just to name a few. Being able to determine which receptor is being activated is not particularly helpful in this light.
Once a person is diagnosed with dystonia, they may be offered botulinum toxin injections. In some locations, physiotherapy may be recommended but the content of the treatment programme tends to vary. There is no standard set of treating principles resulting in mixed results borne out in the literature. However, as far as I am aware there is scant attention given to sensorimotor training according to the latest understanding of ‘how we work’; a unification of action-perception-cognition, our experiences are our brain’s best guess about the possible causes of sensory information for which we seek confirmation with action.
Exercises alone are not enough. The understanding, the engagement with the programme (meaning), the expectation (what you are thinking will happen as a result of the training in that moment — the tape you play of what will happen with your embodied mind; a prediction) and the focus are all important. The complete programme must incorporate these elements as the person living the dystonia (the twists, the pulls, the tension, the jerks, the imprecision, the inconvenience, the pain, the second arrow that is the way you think about yourself and the condition) needs to be able to coach himself or herself in any given moment, day to day in order to be successful. There are a number of simple ways of facilitating this mindset.
Identifying with one’s strengths, those characteristics that have led to successes in the past, and employing them in this arena results in resilience, self-motivation and the necessary perseverance. Practice is key in creating new habits of body awareness, movement control and sense of self. Alongside a focus on strengths, one learns to manage weaknesses and distractions so that the direction of travel remains toward the desired outcome. Creating a clear vision of that desired outcome is an important start point to which one can check orientation.
Remaining open with a broad mindset tends the individual towards greater feelings of satisfaction and happiness. It is the moment emotions that cultivate how we feel and hence to purposefully notice positive emotions and triggers of our positive emotions both maintain a steer towards feeling open. When we are open, we experience the full opportunity that life presents, engaging with people and activities far more effectively, which in turn promotes more consistent positive emotional states. Both of these simple skills form a strong foundation for the sensorimotor training necessary to develop precision of movement, a core change needed to feel better and closer to how one feels one should be feeling in this moment. A further practice is that of mindfulness, which is being aware of what you are feeling, thinking and doing right now in this moment; being present, which by definition removes the suffering caused by our thoughts drifting into the past or future. In so doing, we are robbed of what is really happening right now.
As we understand ‘how we work’ more and more with the unfolding story of the science of the sense of self — who we are, how we function (move and act), how these unify into the lived experience, and how we can reduce suffering by creating the right context for healthy action-perception-cognition with a comprehensive training programme that addresses the lived experience. That is our role as clinicians.
Richmond Stace MCSP MSc (Pain) BSc (Hons)
Specialist Pain Physiotherapist, London