Category Archives: Facial dystonia

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.

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05Aug/16

Facial pain

Facial painYesterday I spent the day in Leicester and Northampton seeing several people suffering facial pain with a colleague who has been working in the field. All pains are unique to the person, however, I feel that there are some particular features of facial pain, which are similar to those of facial dystonia. Identifying these shared characteristics has guided treatment and training techniques that aim to improve sensorimotor function as part of adapting and restoring a sense of self.

The loss of the sense of self is a significant part of suffering in my view. People describe how the pain or dystonia impacts upon their lived experiences and their choices, narrowing both. This means that they are not doing what they wish to and hence do not feel themselves as they feel they should. A shift has occurred, part of which is constructed via the ‘physical’ sense of the body. Of course we have a unified experience of ‘me’ including the sense of the body, a sense of a past, a projected future and the inner dialogue that strings it together.

We literally face the world with our face and hence anything that affects our perception of how we are doing this will impact on how I feel, think, the actions I take and perceptions I perceive. There is a spectrum: a red spot through to jaw dystonia — something visible to others that makes us second guess what they may or may not be thinking. Quite easily this can mean we avoid going out or seeing people. The isolation that ensues then gathers momentum, affecting us on many levels including genetically.

In cases of facial pain there may be no clear and consistent visible signs such as the involuntary movements of facial dystonia, however there are often habitual posture and facial expressions — tension, attempts to relax by opening the mouth, rubbing, speech impediments. When we are in pain, our body sense can be different, the perception of the environment can be different, the way we plan changes and our emotional state is one of protection, as is that of our underlying biology. Whilst this is vital for survival when there is an actual threat (an injury or pathology), in most cases of persistent facial pain and other pains, there is no significant injury. The pain is a habitual response to perceived threats that increase in number with time via learned responses and expectations. Things that would not normally pose as a threat now do, including the way we think about ourselves and the world. With a sensory system detecting changes internally and externally, in survive mode we can be jumpy and very responsive.

Facing the world with a painful face is challenging. Understanding pain is the first step to steering change in a desirable direction — how do you want to be? When the person understands that pain can and does change, and that they are the drivers of that change, then new habits can be formed — new habits of thought and action that are practiced over and over to create the right conditions. Likewise in dystonia, the practice of new habits to change the way in which the sensorimotor system is working but integrated with training that addresses the influences upon this system — e.g./ the environment, thinking, emotion. Learning to recognise and let go of unhelpful and distracting inner dialogue, focusing on what you can do, noticing positive emotions and how you evoke them, re-training sensorimotor function, gradually doing more normal and desired activities are all part of a comprehensive programme based upon the neuroscience of pain and using your strengths to be successful.

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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