Cervical dystonia (CD) is a movement disorder that is characterised by unwanted and involuntary spasms of the muscles in the neck and shoulder region. It can also affect the facial muscles. There is a genetic aspect to cervical dystonia but frequently, people who come for the treatment and re-training programme will describe a period of stress when the problem really took off.
It is not uncommon to hear that the diagnosis eventually came some years after the problem began. Typically a neurologist will diagnose dystonia, although an informed GP or physiotherapist may also identify it from the twitching, pulling and sometimes writhing movements that are cleary involuntary.
Cervical dystonia can be a distressing condition for a number of reasons: the pain and discomfort from the constant tugging, the continuous battle between opposing muscles and attempted conscious corrections, the awareness of others looking, the way that the movement patterns and body sense affects how you feel and your sense of self, your self-esteem and confidence in social situations, perhaps hopelessness in the face of the persisting symptoms; all impact on the condiiton itself and your hopes and expectations.
In conversation with people with CD, we usually identify certain traits such as perfectionism, obsessiveness and a lack of compassion towards oneself (self-critical). In addition, there can be a heightened awareness towards the body, including aesthetically–how do I look? Combining the desire to look a certain way with the manifestations of CD and there is a great deal of angst created.
Modern treatment is often led medically, once diagnosed, 3 monthly injections of botulinum toxin are typical. With the right dose and careful placement of the injections, this creates a great opportunity for sensorimotor re-training. Whilst the training is the mainstay of improving movement, there are a number of other considerations, the so-called non-motor factors. These must be addressed within a treatment and training programme. Merely focusing on the senses and movements is simply not enough, and indeed when we purely attend to a problem at the expense of all else, it will increasingly dominate our thinking. So in a way, to treat a problem, we should not always treat the problem!
Sensorimotor training develops normal body sense and movement, the two being absolutely interrelated. Without good body sense, you cannot move with normal precision, and when we move abnormally, or what is deemed abnormal by the motor system, then our bodies can feel different. When our bodies feel different, the way in which we engage with the world changes and so on. Specific exercises and techniques are used on a ‘little and often’ basis, which are simple and do not require equipment except a mirror on occasion. They necessitate practice like any training that is designed to improve performance, in this case precise movements for everyday life.
Where there has been and is on-going tension from overactive muscles, these body tissues and the underlying joints that are limited in movement by the tension, require nourishment with easy and regular movements. This often works best after a period of relaxation from breathing exercises or mindfulness, both of which promote better blood flow and oxygen delivery. I call this ‘motion is lotion’, a term that I did not coin but use with everyone I see to encourage healthy movement, whether for chronic pain, dystonia or both.
The way we move and the way that our brains plan movement based on predicting what we may do in a given environment, is affected by many factors: e.g./ how you are feeling, what you are thinking, who you are with, what you have been doing, how tired you are, what you plan to do, what your brain predicts that you may do, what you have done before in that environment, to name but a few. You will not be aware of many of these, but you’ll be aware that your spasm or pulling worsens or eases depending on certain circusmstances. Identifying these circumstances and situations allows you to begin dissolving these associations and habits, creating new patterns of movement. Remember that we are designed to learn and change, with opportunities to do so existing at all times.
Spending some time doing something that is meaningful to you is a great way of focusing on something else. Many people with dystonia find that when they are in full flow, the spasm and pulling ease off. This can be when painting, speaking, reading or listening to music. Even if during a meaningful activity you notice the symptoms, you can practice and improve, acknowledging the symptoms and returning your attention to the favoured activity. The pleasure that you gain and the realisation that you can attend elsewhere is part of overcoming the problem.
Mindfulness practice and relaxation play a significant role in changing the brain state, immune state and dampen down other systems that work to protect us including the sensorimotor system. When we perceive a threat, the muscles tense up in readiness to fight or run away. This is a basic biological function that does not help the already overactive muscles of dystonia. Mindfulness is not a spiritual or religious practice but rather a practical way of looking your thinking rather than becoming embroiled in thoughts and living out the past or future in your head. The techniques are simple and can be practiced anywhere.
This is a brief insight into both the condition and some of the ways that we go about changing your experience with a training and treatment programme. As ever, it is the person who needs treatment as they are living the experience of dystonia (it is not the neck experiencing dystonia), much like it is the person who feels hunger, not their stomach that feels hunger. Thinking widely and individually is key to successfully changing the unwanted movement patterns and easing the symptoms, allowing for the resumption of a meaningful life.
For more information or to book an appointment, call 07518 445493