Dystonia and the stretch

Dystonia and the stretch

One Day Closer

You may think that I am talking about stretching as in stretching a muscle as this is often given as an exercise in dystonia. In fact, I am referring to the point in time when there is an opportunity to stretch oneself and go a little longer without botulinum toxin injections.

Injections are often given at 3 monthly intervals. The effects often begin to be felt at 10-12 days and then there is a period of better control (less spasm, torsion etc) before the pulls and tremors start to appear again. This last phase, and they are not distinct, instead on a time continuum like every other moment, is when the person starts to feel something. They then focus in upon the sensation, toying with the meaning by thinking about it, looking at it, becoming increasingly aware until finally the next injection date arrives and the circle begins again. Although it is not really a circle because each day, each moment is utterly unique.

A modern approach that we take is to use the period of relative quiescence to be proactive by following a training programme. The programme involves actively creating a new way forward with sensorimotor exercises and other practices that addresses the non-motor factors that hugely influence how we move. These include attentional bias, emotional state, environment, context and past experience. There are many more. Without comprehensively addressing the person, their life, the condition and how these interface as a lived experience, it is likely that the 12 week cycle will continue. We can do better.

When we move we are fulfilling a prediction that has already been made, mainly by the brain, based on what we know and what has happened before. From this you can probably see how the pattern continues until you start making new predictions. That is the programme: new thinking, new understanding, new expectations, new exercises, new practices, all of which create the conditions for a change in a desired direction. We are always changing, but which way do you want to go? You have a choice.

~ how am I choosing to feel right now?

We always have a choice in how we think about things ultimately. Initially we may have the habitual thought, but with practice we can write a new script. And that script influences how we move.

Movement is part of who we are and what we do. We need movement to survive. Losing the precision and awareness of body sense are key observable features of dystonia and we can practice exercises to improve both. By investing time and effort, and doing your absolute best, you can forge a better experience when you can concentrate on living, being healthy and happy, and when you face one of life’s challenges, you do so with resilience, clear thinking and determination.

The stretch comes when those first feelings begin. You continue to use your practices, keeping a focus on your desired outcome and being inspired by successes you have noted down along with way. You stretch yourself so that you go just a bit further, gapping out the time between injections. Not so much that you suffer greatly, instead feeling a sense of achievement and that you are heading in the right direction.

This is an approach not just for dystonia but also for pain and other challenges in life. We seem to have a tendency to try to avoid unpleasant feelings and situations, which makes sense. The problem is that we cannot avoid them and so developing a way to see an opportunity to learn and grow makes it a challenge to be overcome, an experience to transform.

You can when you think you can.

Pain Coach & Dystonia Coach Programmes to overcome challenges: call us to start your programme 07518 445493 or email [email protected]


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