Category Archives: Cervical 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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02May/17

Dystonia and the stretch

Dystonia and the stretch

One Day Closer
https://flic.kr/p/dH5H6h

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.

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15Dec/16

Faces

Faces

faces

As I sat and watched the last of my children’s nativity play, I paid particular attention to all the little faces staring out into the room. So many expressions shaped and re-shaped as they performed and watched others perform their parts, telling the traditional story. Then there were those who were looking out to the parents, reacting to acknowledgement and encouragement, and of course the one picking his nose and eating the sticky attachment to his finger. So many faces telling so many stories that collectively gave us the experience of the nativity. Imagine the same play but without any faces. It’s unimaginable as faces are such a significant part of who we are to the world.

We face the world, we face each other, we face off, we pull a face; ‘let’s face it’, you may say to someone. There is a purpose to having a face (including nasal excavation!), which is about recognition, bonding with others and survival. These are all basic aspects of being human and therefore when something goes wrong, it heavily impacts upon the person. One of the most dramatic problems is facial dystonia, within which I include temporomandibular (jaw) dystonia, when the facial muscles are contracting uncontrollably and involuntarily. This form of dystonia has far reaching effects upon recognition, bonding (connectedness) and survival mechanisms as I shall explore. Suffice to say that we are talking about great suffering endured as a result of this condition.

Before describing how dystonia affects these dimensions, I outline my thinking with regards to the purpose of a face. Clearly there is great importance that is supported by the significant representation of the face that resides in the sensorimotor cortex forming part of the so-called homonculus. Our distinct features are recognised by others to identify ‘me’ but I also have a sense of how I look according to those features. My face plays a role in how I meet people and engage with them to form bonds. This is a vital part of our existence, with connectedness playing a role in health and survival as we create communities for mutual benefit. We also bond more intimately, our face and ‘looks’ holding some sway along with how we use the communication functions of the face: verbal and non-verbal. We can gather information about a person by their expression. The person also gathers information about themselves via their felt expression, and indeed can change mood by forcing a new facial position that is predicted to mean something new. For example, if we force a smile, our brain predicts that the most likely cause of the sensory information (from the muscles, joints etc) is happiness, and therefore we feel a sense of joy. The facial role in survival includes breathing, eating and drinking, all specialised and precise activities that are essential.

So what happens when things go wrong?

Aside from dystonia, what else ‘changes’ the face with a consequential impact? I would include conditions such as acne, eczema, facial pain (e.g. trigeminal neuralgia), dental problems, eye complaints (infection, squint, lazy eye, blepharospasm, and other issues that distort the normal or expected configuration and placement of facial features. The Maggie Thatcher Illusion was reported by Professor Peter Thompson in 1980, demonstrating the importance of faces. Both hands and faces have a large representation in the brain, perhaps indicating their significance in our on-going existence. The recent book by Darian Leader, well worth reading, made a study of hands: Hands: What We Do with Them – and Why. The importance of faces and hands then, will amplify the effect when something is deemed to be wrong. Consider the loss of a hand by amputation, and the subsequent feel of what it is like in the frequent case of phantom limb sensations, which can include pain, or the way in which a hand and the digits are experienced following immobilisation.

Recognition

Those that know us will always recognise us because of familiarity and because their brains (we are more than a brain but for ease I will use the term) make a prediction based on prior knowledge. They simply see ‘me’. However, my sense of self in part is determined by how I feel physically. What does my body feel like? What it is like to be me is more than just the physical sensation as the moment is filled with perception, cognition (thinking) and action. The three are unified into this ‘what it feels like to be me’. With a distortion or a sense that something is not right or how I want it to be, there is a mismatch that creates discomfort, rumination, and suffering to a varying degree. We can sometimes say, ‘I don’t feel like myself today’, referring to different reasons as to why this may be, and in fact, perhaps we can consider therapy to be a way to restore a sense of self. Not how I used to be as we cannot reverse time, but gain a sense of who I am, my authentic self. Movement is part of who I am as demonstrated by the way we recognise someone by their walk or other mannerisms. When we are in flow, these mannerisms occur without thought. As soon as we consciously attend to something that we would not normally think about, it can change. The yips in golf is an example as is the way some people find it hard initially to focus on their breathing when practicing mindfulness.

So, when my face changes, or I perceive a change, then I can feel somehow different from the expected or known ‘me’, which then impacts upon how I engage with the world. Self-consciousness is a commonly described, causing a withdrawal from society. Feeding this can be self-criticism and a sense of shame (a concern about losing connections), which both need addressing as these feelings bring about on-going self-protection that includes the way we move. The emotional centres of the brain communicate enormously with the basal ganglia that has such a role in movement disorders. I am not surprised by recent findings in relation to the gut and Parkinson’s disease as the way we feel, the gut, our overall health are so inextricably entwined. A change in gut flora and emotions come hand in hand and with the way in which our emotional state affects the way we move and interact with the world, hence we need to consider the whole person.

Facial expressions are part of who we are and how we communicate with others. When this changes, and usually an enforced change at that, how we recognise ourselves shifts. People who know the person will continue to know them in that ever-evolving way, and those who do not know the person must look beyond the condition and the way it presents to see the whole. As a society we have an obligation to think about the whole individual as they are not defined by any condition or behaviour.

Bonding

We are designed, so it seems, to be connected with others and form communities within which we support each other, care about each other and share experiences. Initial meetings arise for all sorts of reasons but in essence when we come together, we look at each other and learn about the features of that person via their posturing as well as the physical characteristics. Implicitly we will be attracted to some people and less so to others. These natural biases we can overcome as we mature and learn about the essence of people.

To bond we would often spend time with someone and talk so that we can learn about each other. The act of speaking is incredibly complex, involving many movements that allow us to form words and make noises. With the involuntary movements of dystonia this can be extremely challenging. This can become even more the case when talking to strangers, to the extent that it may cause the person to avoid doing so. This is one of the areas that we work upon in the training programme both in terms of the formation of words (sensorimotor exercises) and increasing confidence to go and speak to people.

There is a challenge to bonding in some instances. It means being vulnerable and taking a risk as you put your authentic self out there. This is of course how we gain the reward although sometimes it does not work out and we can learn once the feelings of disappointment subside. Developing our sense of worthiness is important under these circumstances, and perhaps even more so with the additional burden of dystonia. As with chronic pain, it is not just about doing some exercises to get better, instead a ‘whole’ approach that addresses all dimensions of the lived experience ~ e.g./ understanding, thinking clearly, developing confidence and resilience. All of these skills can be practiced as ‘skills of well being’.

Survival

On a simple level, to survive we must breathe and we must eat and drink. These acts can be somewhat complicated when facial dystonia affects how the mouth is controlled and in some cases taking a simple breath in through the nose can be more difficult. This is not to say that the person cannot breathe! The involuntary movements can be distracting and impact upon how the person actually takes a breath in through their nose or mouth. If they have a cold, then this can be exacerbated.

Choice of food can be narrowed as chewing is especially difficult. Chewing is a skill, which requires precision of movement but also with how much pressure to apply via the jaw and manipulating the food with the tongue. Again, like any skill, this can be practiced as part of a training programme to improve the efficiency, economy and precision. One of the reasons that dystonia can be muscularly painful is because of the overworking muscles. This also results in tension and stiffness described. Muscles are working when they do not need to and when they do need to, they are working too much. There is a circular causality to this feature, similarly in chronic pain when the muscles are being ‘told’ by the higher centres to protect the area. This loop continues until a new (active) inference is made with new information (understanding your condition and how it presents or emerges in you) and actions purposely made with the intent of change in a new direction.

With the self-protect system functioning as a result of the threat of the situation, and this is both conscious and sub-conscious, added to by self-criticism and a lack of self-worth that can be evident, there is a state of ‘freeze or fright or flight’ at play. This involves being prepared to run away or fight or express some kind of communication via the face and mouth: shouting, bearing teeth etc. These are very basic instincts and behaviours at play; the so-called old-brain. The self-protect system plays a vital role in our survival but only in short bursts. When there is a persistent state of protect going on, then our health and we suffer in a number of ways. However, there are a number of simple practices that again I would term the skills of well being, which we can adopt each day to gain healthy benefits. This is in essence the antidote to protect and by being able to gain insight into how we think and act, we can use this awareness to learn to regulate our emotions, make choices with clarity, reappraise situations and thoughts and maintain a focus on what we can do to feel well, healthy and live a meaningful life.

This blog merely touches on many areas that are relevant to dystonia, chronic pain and some of the important roles of a face. Why do we need a face? We have looked at several important reasons and made relevant to dystonia. There are different and unique causes of suffering endured by people with facial dystonia that we identify and work on transforming with specific training but within a context of understanding and compassion that is at the heart of what we do.

For further information about the complete training programme for dystonia, please complete the following form:

29Aug/16

New thinking in dystonia

New thinking in dystoniaWe need new thinking in dystonia because the treatment of this very troubling condition must improve. This means that people suffering dystonia feel that they are getting better. The same can be said for all conditions that are viewed as persistent, as our understanding moves forward, creating new approaches that must be based upon science. One areas of particular interest that I believe will be highly influential, is the science of consciousness — what is it to be conscious? What is it to be like something?

The patient’s lived experience is something we seek to gain insight into as clinicians so that we can shape a forward trajectory characterised by less suffering. I would argue that this is an approach that we should be taking for all conditions. We may have an injury, a pathology, a disease or a pain yet we can always seek to reduce suffering in a number of ways by taking a broader perspective and look at the causes of suffering that are not directly related to the condition. This could be termed a whole person approach or a sociopsychological approach with a minor contribution from the biological dimensions — is it useful to understand the molecular biology of pain or to know what action to take to feel better? I would argue the latter. To feel better we may need to foster relationships, communicate, move, create a new habit, consider financial or occupational matters, just to name a few. Being able to determine which receptor is being activated is not particularly helpful in this light.

Once a person is diagnosed with dystonia, they may be offered botulinum toxin injections. In some locations, physiotherapy may be recommended but the content of the treatment programme tends to vary. There is no standard set of treating principles resulting in mixed results borne out in the literature. However, as far as I am aware there is scant attention given to sensorimotor training according to the latest understanding of ‘how we work’; a unification of action-perception-cognition, our experiences are our brain’s best guess about the possible causes of sensory information for which we seek confirmation with action.

Exercises alone are not enough. The understanding, the engagement with the programme (meaning), the expectation (what you are thinking will happen as a result of the training in that moment — the tape you play of what will happen with your embodied mind; a prediction) and the focus are all important. The complete programme must incorporate these elements as the person living the dystonia (the twists, the pulls, the tension, the jerks, the imprecision, the inconvenience, the pain, the second arrow that is the way you think about yourself and the condition) needs to be able to coach themselves in any given moment, day to day in order to be successful. There are a number of simple ways of facilitating this mindset.

Identifying with one’s strengths, those characteristics that have led to successes in the past, and employing them in this arena results in resilience, self-motivation and the necessary perseverance. Practice is key in creating new habits of body awareness, movement control and sense of self. Alongside a focus on strengths, one learns to manage weaknesses and distractions so that the direction of travel remains toward the desired outcome. Creating a clear vision of that desired outcome is an important start point to which one can check orientation.

Remaining open with a broad mindset tends the individual towards greater feelings of satisfaction and happiness. It is the the moment to moment emotions that cultivate how we feel and hence to purposefully notice positive emotions and triggers of our positive emotions both maintain a steer towards feeling open. When we are open, we experience the full opportunity that life presents, engaging with people and activities far more effectively, which in turn promotes more consistent positive emotional states. Both of these simple skills form a strong foundation for the sensorimotor training necessary to develop precision of movement, a core change needed to feel better and closer to how one feels one should be feeling in this moment. A further practice is that of mindfulness, which is being aware of what you are feeling, thinking and doing right now in this moment; being present, which by definition removes the suffering caused by our thoughts drifting into the past or future. In so doing, we are robbed of what is really happening right now.

As we understand ‘how we work’ more and more with the unfolding story of the science of the sense of self — who we are, how we function (move and act), how these unify into the lived experience, and how we can reduce suffering by creating the right context for healthy action-perception-cognition with a comprehensive training programme that addresses the lived experience. That is our role as clinicians.

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19May/16

Cervical dystonia and anxiety

Cervical dystonia and anxietyVarying degrees of anxiety are usually described by the person who suffers cervical dystonia and there are a number of understandable reasons. Firstly, anxiety about the condition itself — what is it? What does it mean for me? Will it get better? What can I do? Can anyone help me? Secondly, the person suffering dystonia often has had a tendency to worry in life, frequently feeling anxious, over-thinking things, ruminating and over-focusing on unhelpful thoughts. These are all habits of thought but experienced as that story we tell ourselves, the inner dialogue, that can be so impacting on our reality and perception. Combining these, there is usually an attentional bias towards the feelings of dystonia, the pulls, the tension or spasm, and at these times, the symptoms are worse. Conversely, when distracted or engaged in something more interesting or meaningful, the symptoms ease. And when we are not aware, in essence it is not happening!

When we feel anxious it is because of the meaning with give to those familiar feelings in our body — tingling in the tummy, tension etc. The meaning we have attributed to the causes of those sensations is something threatening and consequently we act by preparing to deal with that threat. This is the same biology as used to face a threat in the wild: fright or flight. Part of the way the body/we deal with threat is to get ready to run away or fight, both of which need mobilisation of resources to our muscles, which is why they tense up in readiness. But, in dystonia there is already overactivity and unwanted movement, so the additional preparation as described can only add to this experience and put out attention on the sensations.

One of the issues in cervical and facial dystonia is altered body sense and sense of self. It seems that when we have an altered body sense, which means that there is a mismatch between what is happening (sensory input) versus what the brain expects (or predicts). This creates a threat and hence the biology that is responsible for detecting and acting upon this state is active in creating a fright or flight response that the person then predicts as anxiety. The same happens in persistent pain states when body sense and sense of self changes; not permanently, but it needs training. This is one of the reasons why exercise and movement reduce anxiety because we improve our body sense.

A significant part of the re-training programme for both dystonia and pain is body sense based. Body sense, ‘where I am’ and ‘what I am doing’, is really a unification of internal sense, external sense and proprioception somewhat threaded together by the narrative that I tell myself. Ironically, when we feel ourselves, we don’t really think about our body! So this is the desired outcome: not thinking too much about our body and in fact using our body to help us focus on the job in hand; e.g. when walking, we don’t normally think about how we are walking, we just walk; the body is thinking for us — aka ’embodied cognition’. When the person says to me, ‘I feel myself again’, then I know that they are reaching or have reached their desired outcome.

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17May/16

Cervical dystonia and body sense

Cervical dystonia 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.

RS

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14Mar/16

Physiotherapy Dystonia Network Meeting

Last week was the Physiotherapy Dystonia Network Meeting in Birmingham, attended by physiotherapists who work with people suffering dystonia who wish to engage in conversations to further our understanding and impact upon this condition. Chaired by Dr Marie-Helene Marion, it was a day of engaging conversations, led by pertinent, short talks that shared knowledge and experience. One aim is to develop the network, which would further the awareness of dystonia and create opportunities for clinicians to build their skills and knowledge together.

I was asked to talk about my approach to cervical dystonia (see my slides here: http://www.slideshare.net/RichmondStaceMCSPMSc/physiotherapy-dystonia-network-meeting-11th-march-2016). Similar to the way in which I approach persistent pain, the programme is neuroscience-based coaching and treatment for cervical dystonia.

Beginning with how Dr Marion and I met, and how we shared stories of chronic pain and dystonia before realising that there was significant overlap in the characteristics and hence approach that could be taken, I then provided some background as to why I do what I do with people suffering cervical dystonia. I emphasised the over-arching need to consider the whole-person, their story and how their narrative fits within their life as a lived experience.

Cervical dystonia is a condition that sits at the root of the sense of self. We face the world with our bodies and the way in which we move, posture and gesture communicates with others. Yet this moving and posturing is affected by the way we feel, where we are, who we are with, what we have been doing, what we may do in the future moments (and we may not be aware of what that will be in any given environment), and hence the final product of movement is the brain’s best guess as to what we should be doing in the light of the current evidence, based on past experience. And the brain does not always get it right! Of course we are not separate from our brain; we are our brain, our body, our mind and our reality as created by the sum of these within a particular environment.

Despite this seeming complexity and perhaps departure from the classic model of mind-body separation, a moment’s thought and we soon realise with some simple examples that embodied cognition is a useful way of thinking about the way we exist. Where do you feel anxious? Usually in your abdomen or chest although anxiety would be considered a ‘mental’ experience. Trying to separate body and mind does no justice to our lived experience and reduces the impact of any treatment programme.

Having briefly covered this, I described some of the training methods that include motor imagery, visualisation, sensory discrimination training, proprioception and motor training. None of these are discreet but instead are moulded together in the form of a comprehensive programme to create new learning experiences towards a more normally functioning sensorimotor system, but remembering that this ‘system’ works closely with emotional, attentional and motivational areas of the brain, that is of course part of the whole person, residing within their reality and perception of life to date. Nothing happens in isolation. We seek to restore a sense of self; who we feel we should be.

My talk was brief and hence only able to scrath the surface of some important considerations, especially the need to set the scene for training by helping the person develop their thinking and self-coaching skills. The aim now is to expand this talk into a day long learning experience that looks at each area and how they tie together into an approach. Keep an eye on the website and twitter for updates (@painphysio). There will also be a series of blogs, considering some of the key issues in cervical dystonia to follow.

If you would like any further information, please do get in touch: 07518 445493

Useful links:

The British Neurotoxin Network

The Dystonia Society

 

14Sep/15

Cervical dystonia

Keoni Cabral | https://flic.kr/p/9EVhyB

Keoni Cabral | https://flic.kr/p/9EVhyB

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

05Dec/13

Dystonia Society meeting | Talk on sensorimotor training for cervical dystonia

Dystonia SocietyThe ‘Living with Dystonia’ Day, organised by the Dystonia Society, was held in London in November. This was an opportunity to talk to neck dystonia sufferers and their carers about the sensorimotor training programme that I am using in conjunction with botox treatment — see here.

We have an understanding of how the brain plans and then executes movement. This is based upon a blend of prediction, feedback from the body’s sensory systems and what has been learned (i.e. prior experience). Tests in the clinic can identify an altered sense of body, a common finding in both cases of chronic pain and dystonia, that impacts upon the precision with which we would normally move. It is an issue of ‘threat’ when the movement that actually occurs does not match with the expected pattern or blueprint that exists in the brain. Any sense of threat can be enough for protective measures to be taken by the brain, e.g./ pain, guarding. This is the neurobiology of movement, and involves many parts of the brain including the motor centres, the basal ganglia and the cerebellum.

A key point that I made during the talk, and one that I make to patients, is that not only do we need to think about how the neurobiology of movement or the pain that is manifesting, but we also must consider the array of influences upon this biology. Those that we know well include stress, anxiety, prior experience, beliefs, the environment, the context, who we are with and what we are thinking about. All of these affect movement that is an expression of our ‘self’ at any given moment — what we are doing, thinking and feeling.

Our posturing or body language represents an interface between our sense of self and the outside world. When our movement changes, so does our relationship with the World. Certainly in neck dystonia, almost all of those who come to see me will talk about how it makes them feel to experience involuntary movements whilst in public places. Many will avoid going out if possible.

The involuntary movements, the lack of control and body awareness are all manifest and emergent characteristics of ‘re-wiring’ in the brain; the dark side of neuroplasticity. To improve motor control in these cases, we need to start at the level of planning rather than practicing actual movements. However, it is not just about the movement but also the sensory aspects that inform the brain. Hence the training is ‘sensorimotor’ that develops a better body sense to then normalise how it moves. The two are so interlinked in my view, that they are in fact one and the same; an overall mechanism of expression or function.

There are specific training strategies used for improving sensorimotor action including motor imagery and tactile discrimination exercises. Concurrently we look at the individual’s lifestyle influences: stressors, thoughts that cause anxiety and other non-motor factors that impact upon the movements and muscle activity.

Tension in muscles that persists can cause pain as the blood flow changes, acids build up and nerve endings that sample the tissues become sensitised. The messages sent to the brain about the tension and chemicals can result in a pain experience and often does in neck dystonia. Imagine performing bicep curls all day, every day. It would begin to hurt. With increased muscle activity due to involuntary movements and imprecise control, this is exactly what is happening. Reducing muscle tension by developing better control of movement and using techniques that are known to promote restorative activity are effective ways of re-programming how the body is working. Mindfulness or focussed-attention training are the methods of choice.

It is a very exciting time as we better understand movement and pain from a neuroscience perspective. The research must continue as we continually seek to improve the way in which we treat dystonia. The approach, as I described, must be comprehensive in addressing the physical, cognitive and emotional dimensions of the problem. In doing so we are offering a route forward via sensorimotor training, best applied in conjunction with botox treatment that both changes the muscle activity and eases pain.

For further information or to book an appointment, please contact us on 07932 689081

 

 

07Oct/13

Tackling dystonia | British Neurotoxin Network Conference 2013 | Keble College, Oxford

Keble collIt was a pleasure to speak at the British Neurotoxin Network conference this week, a meeting for specialists in dystonia who use botulinum toxin as a form of treatment. Held at Keble College in Oxford, the surroundings were perfect for meeting, discussion and the sharing of ideas.

BNN Conference Programme here

Before dining in the magnificent hall, the audience was entertained by a talk from Dr. Marion on facial expressions, referring to Duchenne, Darwin and the work of Paul Ekman. Much of our communication relies on body language with facial expression revealing much about the emotional state. This is useful to communicate effectively, to demonstrate empathy and to determine threat—i.e. an angry face. Equally, a loss of facial expression due to cosmetic Botox treatment or facial paralysis affects one’s ability to show genuine emotion. A lesser known feature is that we can change our expression to alter our emotion. A simple technique to improve one’s mood is to grip a pencil between your teeth thereby forcing a smile. The feedback from the face to the brain persuades it it sense something good and hence our mood alters.

The focus of my talk was upon the reconceptualisation of pain, looking at whether this process can be considered as a way to progress the rehabilitation of dystonia. The slow move away from a biomedical model to the comprehensive biopsychosocial model has changed both the way we think about and tackle the problem of pain. Understanding that pain is multidimensional (physical, cognitive and emotional) means that there are a number of considerations that are unique to the patient. This makes it key to address the person as much as the condition.

In addition to the tissue based therapies that play role in the treatment of chronic pain, the modern brain based techniques are becoming increasingly recognised as part of a comprehensive programme. Discussing these therapies for pain in the light of what we know about the underlying mechanisms, it has been apparent that they could apply in dystonia and other movement disorders. The cortical reorganisation that we understand in both pain and dystonia is an important focus of a training programme. Graded motor imagery, tactile discrimination training and other brain targeted strategies not only seek to ‘re-organise’ but also to desensitise. Pain is all about a perceived threat by the brain, so any change or learning that reduces the threat can change pain and also movement.

With movement being an expression of who we are, how we are feeling, what we are doing and what we intend to do (we may not realise this fully), when we have difficulty because of pain or a lack of voluntary control, this impacts upon the way we feel. Our movement and posturing interface with the World, so reflect the situation that we are in as much as how we feel about that situation. The bidirectional nature of this interface offers different ways of changing our emotional state and retraining normal movement.

The science based talks focused upon genes (Dr Sean O’Riordan, Consultant Neurologist), cortical reorganisation, the effects of vibration (Dr Richard Grunewald) and deep brain stimulation (Mr Alex Green, Neurosurgeon), all of which are ‘neuroimmune’ lines of thought. Tying this basic science with what we can do therapeutically is a key way in which we can seek to move forward and cultivate new ideas. Clearly we need further research to look at all of these paradigms and develop our knowledge but we are in an excellent position to use some of the existing pain therapies that target the central nervous system to improve body sense and motor control via sensorimotor congruence.

Thanks to Dr Marion and Mondale Events for a great two days.

Here is some information on our treatment, training and coaching for dystonia

RS