Dystonia — facing the world

Dystonia — the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. It is estimated to affect at least 70,000 people in the UK; Dystonia Society — has varying impact upon the individual. By this I refer to the way in which it makes the person view themselves, their sense of self, and how the world sees them.

Our physical persona, the way we represent ourselves to the world via body language, posturing and movement to an extent defines us and how we feel. This is bi-directional as we will respond physically to how we are feeling and what we are thinking as much as noticing how our body feels to then ascribe an emotion; for example, butterflies in the stomach will typically trigger thoughts that we must be anxious.

Having spoken to many people with dystonia, this significant part of the experience is rarely addressed. It must be. On a practical level, understanding that movement is affected by a number of influences such as where we are, who we are with, how we are feeling, where we are and what we have been doing, helps to cope and deal with the unwanted motion on several different levels. Further, to know that the brain is constantly predicting what actions will be required next and planning how to use the body, provides insight into how certain involuntary movements can be initiated.

In dystonia, the way in which the brain perceives the body is altered as is the way movements are planned and executed. A loss of precision means that there is unwanted and uncontrolled actions in both a sensory and motor context. This is why training must be multisensory and embrace the sensorimotor system as a whole, from a planning stage through to actual movement.

How we face the world and whether we choose to face the world will be dependent upon how we feel. Being able to cope with this will impact upon the extent to which socialisation continues or is voluntarily curtailed. Cultivating skills in dealing with the thought processes and being able to intervene independently has a positive effect, reducing and minimising the impact. This is also a key skill to use in optimising the outcome of the training programme, by changing the way that the brain is functioning in a motor sense, so that the focus and quality is of a high level. Practice is key.

Focused attention training or mindfulness should form part of a comprehensive treatment programme. It can be thought of as setting the scene, creating a brain state of calm and readiness for the actions that are required to re-train precision of movement and body sense. It is a state that can be cultivated that means troubling thoughts do not get played through the body (tension, altered movement, involuntary movement).

There are many healthy, physical and mental benefits of mindful practice, tackling the so significant non-motor factors that are barely mentioned, yet play such a huge role in the individual’s suffering. We are understanding the brain changes associated with this practice as neuroscientists study the effects upon the wiring — a crude analogy of the brain’s function — and how this translates into a positive experience of life.

Stand alone, mindfulness practice can change our interface with the world. Combined with specific sensorimotor training and the creation of new habits, the potency is magnified. On a practical note, mindfulness can be used at all stages of dystonia, acute through chronic. The sensorimotor training often requires a degree of quiescence and hence will usually begin after botox treatment. The design of any treatment and training programme will depend very much on the individual need and circumstance.

As I have argued recently in writing and speaking at several conferences (Dystonia Society DayBritish Neurotoxin Network meeting 2013) , to address dystonia — and chronic pain — we must consider the biology of the condition but also the biology of the influencing factors that are such a significant part of the narrative.

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