Tag Archives: neck dystonia

25Nov/17
Overcome dystonia and live life

Why mindfulness can help dystonia

Overcome dystonia and live life

There has been huge hype over mindfulness for the past few years. It is important that now we establish what we really know and what has been shown to be true. There are a couple of very important effects that are of great benefit. I will talk about these shortly, and in particular how these can be useful as part of a training and coaching programme to overcome dystonia. Before we look at how mindfulness can help dystonia, let’s consider mindfulness and a key feature of dystonia.

What is mindfulness?

Mindfulness is simply being aware, being present, yet not judging. You are not trying to get anywhere, be anything different or trying to achieve anything. Mindfulness just is. This may sound a little vacuous but this is the truth. In trying to get somewhere or be something, you are missing what is actually happening right now. To be mindful is to accept all thoughts, feelings and emotions as they arise and as they pass. We spend a lot of time in the past or future in our thinking, which is entirely embodied, instead of seeing and being aware of what is really happening in this moment, the only moment.

In being mindful, we often feel a sense of calm and clarity because we are not embroiled within the emotional state. Instead we are aware and feel the feelings but they do not control, or hijack us. This clarity permits us to make best choices with full awareness and to see things as they really are instead of through biased lenses.

A key feature of dystonia

Attention plays a significant role in dystonia, and pain. The more attention we put upon the feelings, the torsions, the jerks, the more it builds. When we think that someone is looking at us, our ability to assume we know what they are thinking adds to the mix in the form of self-consciousness. Commonly this amplifies the unwanted movements as we shift deeper into a protect state.

Movement is not separate to our sense of body, our emotional state and our environment. There are always potential actions in a particular place, and the brain is continuously hypothesising which movement best explains our intentions. A lack of control of sensorimotor function, or a loss of precision, means that movements emerge involuntarily. We play out, or actually move as a fulfilment of a prediction that the brain has already made. This is a forward moving (time) loop, whereby we continue to play out a prediction in the form of dystonia experienced by the person. In other words, their particular style, which is unique to them.

So, how we feel, which is based upon where our attention lies, affects our movement and hence dystonic movements. Building our control over our attention then, becomes an important skill and not just for dystonia. Being able to focus is now known to be an important skill of being well (Davidson, 2016), as is self-control (Moffitt et al. 2011).

Why is mindful practice good for dystonia?

We know that mindful practice helps us to develop out attentional ability–to keep a focus upon what we want to focus upon. A recent study entitled ‘A wandering mind is an unhappy mind’ identified the problem of attention, and in the modern world we are continually being stimulated by potential attention grabbers. Take phones as a starter. It is not only the ring, the beep, the song tune, the vibration but the fact that the phone by its very presence offers an affordance. There is a very definite effect of a phone being on the table during a meeting, or being by the bedside at night. We are taking on the device as part of our sense of self, meaning that when left behind, it is akin to leaving a leg behind. The state of panic that emerges when you realise that it is not in your pocket and you may have to spend the day not checking for notifications. 

Mindfulness develops our ability to pay attention and hence impact positively on the experience aforementioned. When we can focus, we can exert a measure of self-control. We understand the importance of self-control, which has been amply decisive by the marshmallow test. Kids who were able to exert self-control and restrain themselves from eating the one on the table, were found to be healthier and more financially successful later in life. Further studies upon self-control have added to the understanding of this important skill. This is most certainly something we can get better at with practice. 

Mindfulness helps us to focus and pay attention

Undoubtedly, mindfulness is a practice that is best begun on a 1:1 basis. It is not inert, it needs to be practiced in the right way and questions will need answering. Commonly people think it is all about stopping the mind from working, or stopping thoughts. This is not true at all and becomes a problem because this is unachievable. The mind is not meant to ‘stop’. Instead, we learn to observe our thoughts and feelings, fully experiencing them but not being controlled, or hijacked. Books can be helpful, but they are not themselves teachers or encouragers. And when you are seeking to overcome a condition, mindfulness is part of the approach, which can be very useful, but it is not the only practice in most cases. 

“A simple practice to notice how your mind wanders and how you can bring your attention back is to pay attention to 10 breaths and see what happens. If your mind does drift away, each time you come back to your breathing as a focus. There is no problem with the mind wandering, and resuming attention upon the breath can be thought of as a ‘rep’, just like any other exercise”

The ability to focus one’s attention in dystonia has several benefits. Firstly so that you don’t become over-focused on the bodily sensations, which results in certain thoughts and feelings that perpetuate your vigilance. Breaking that cycle is empowering as you learn to put your focus where you want to, or need to, depending on what you are doing. Combine this with the emotional control and you gain an ability to see things for what they are instead of being victim of an emotional response that controls you. For instance, a common description of the effect of thinking that someone is looking at you: makes me self-conscious of the movements, I second guess what they are thinking (and this is usually something quite unkind and threatening), I become more aware and the involuntary movement builds and so on. 

Secondly, as referred to above, there is a dampening effect upon high emotional states, giving us greater control over emotions and hence ourselves and our ability to make best choices. To address dystonia, which in many ways is similar in principle to overcoming chronic pain, requires understanding that informs practices that are used each day to head in a desired direction. In a way this is about peak performance, getting the best from an individual as they focus on what they need to do right now, doing this in the best possible way that they can, considering the circumstances. To achieve this requires focus and control, both of which emerge from the practice of mindfulness. 

Other work has demonstrated further benefits of mindfulness including feelings and actions of compassion, a reduction in inflammation and the generation of a feeling of calm. The number of published papers has grown enormously and we will see this continue as researchers explore what we really know.  

Training for dystonia

Mindfulness is a part of the programme for dystonia. Mindful practice helps the person to focus, to be less distracted by the sensations and to reduce emotional hijacking. In essence, we are in more control and experience the full richness of life as we see things for what they really are instead of through a range of biased lenses. To get the best of ourselves we must be able to focus and be in control of emotions. Of course we are human and hence this does not always happen. But we strive to do our best as much of the time as we can. This is one of the principles of the programme for dystonia, and for overcoming pain. 

There are a number of other practices, which I will not be fully describing here. But just to mention a few is useful. Other training would include specific sensorimotor training to develop precision of movement and positioning in the environment of the body, a fundamental skill. We need good body sense and an implicit understanding of my boundary—where I end and the environment begins. Without this, it is both hard and potentially threatening to the individual, the latter evoking a range of protective measures including altered movement planning and execution. We would seek to nourish the areas that are overworking with simple movements and treatments, to have a plan for day to day activities and to make sure that life is being lived in the best possible way. One accepts and acknowledges the current parameters for living life, but with a view that this will change—we are designed to change of course. Finally, the skills of being well are used and integrated into each day so that the person can build wellness, the greatest buffer we have to life’s challenges. 


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05Jan/14

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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