The main focus of cervical dystonia is usually the neck yet in my experience it is not just the neck where body sense changes. A simple balance test identifies a poor ability to remain upright in an economical fashion in most cases and there are several reasons for this feature: altered body sense and the fact that with cervical dystonia, the involuntary movements ensure that the world appears to be constantly moving and thereby the person is perpetually correcting their position relative to the environment. We are all doing this, but in dystonia when there is spasm, this is amplified and hugely troublesome for the person, often the cause of great suffering.
Many people with cervical dystonia tell me that their awareness of the movements increases when they are walking. Walking involves transferring weight from side to side, in effect re-balancing over and over as you move forwards. Without precise body sense this becomes a challenge. I use oversteer as an analogy when playing an arcade driving game, as I turn the wheel too much one way and then the other with compensation after compensation. Continue update and correction is exhausting, so no wonder people with dystonia often feel tired. Heads are heavy and with all the extra muscle activity, fatigue sets in and often hurts if not the cause of stiffness and tension alone.
This being the case, improving one’s overall body sense is an important part of improving cervical dystonia. This is done simply with balance exercises set up in such a way that the position is precise thereby creating an effective learning opportunity. What we do now impacts on the next movement or position, so practicing best quality is key. This is why when balancing, some support is important so that the person can hold best posture, feel it and see it in the mirror; i.e./ learn.
There are a couple of other important points about walking and an increase in symptoms that I will not be going into details about here, but they are part of the bigger picture. Firstly we can have an attentional bias, which means that the person will regularly focus on the feelings (pulls, twists, spasms etc.). Secondly, there can be an expectation or anticipation that this is what happens when I walk down the road, even before you do it. This primes and an association builds — i.e./ it becomes a habit. But, habits can be replaced.
Training a better body sense locally is a key part of changing dystonia and improving movement quality. We cannot move normally without experiencing a normal body sense — where I am, my position, speed of movement, when to stop, where I am in relation to the environment etc. So in cervical dystonia, learning where your head is positioned and re-training normal muscle activity when you are using your arms and hands is key, as is an overall body sense.
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