The Dystonia Society

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Self-help

This page provides information on stress innoculation techniques that can help cope with dystonia. If you'd like information on other aspects of managing dystonia such as getting the best out of treatment, taking care of the body and managing the feelings associated with dystonia click here for our managing dystonia page.

Click here if you would like to read a PDF of this page

At present, dystonia remains a difficult condition to treat. Many dystonia sufferers have to continue their jobs and daily responsibilities, and at the same time try to cope with their condition. The stress inoculation techniques described in this article were originally developed by Dr Meichenbaun and others in America and have been successfully used by many individuals to cope with a variety of stressful situations.

The value of these self-help techniques for dystonia sufferers was assessed in a project carried out by Marjan Jahanshahi and Professor David Marsden, which was partly funded by the Dystonia Society. The results suggested that the use of these techniques helped dystonia sufferers cope with their illness in everyday situations. We hope that regular use of these self-help techniques will be of value to you.

Topics discussed are (click to go to topic):

Stress inoculation

The technique that you will be using to cope with your dystonia is called stress-inoculation. The idea behind stress-inoculation is that in the same way that people can be inoculated or vaccinated against physical illnesses such as polio, they can learn to cope with stress if they are adequately prepared for it beforehand.

Why stress-inoculation is useful for people with dystonia
Dystonia is considered to be a neuromuscular disorder and not a psychological one. However, living with a chronic physical disorder, especially one like dystonia, which can make you look different, can sometimes give rise to feelings of apprehension, anxiety, fear, hopelessness and helplessness. Also, as you probably know from your own personal experience, the severity of your dystonia is often affected by psychological factors. Think back on those occasions when you have been under stress and remember how your dystonia seemed to have become worse.

When you first learned of the nature of your disorder, it was quite natural to have gone through stages of shock, anger (why me?), despair and depression. But then acceptance of the disorder must follow. The evolution through these stages may take some time but you must work positively towards the stage of accepting your disorder and seeing how you can get around it in your everyday life. Stress-inoculation aims to help you come to terms with your torticollis and learn to cope with the difficult situations in your everyday life, when your dystonia seems to get worse.

What will stress-inoculation involve?
•    "They will think I look bizarre."
•    "My life is ruined."
•    "What have I done to deserve this?"
•    "I cannot tolerate this pain any more."
•    "My future is hopeless."

Do you recognise any of these statements, or equivalent ones, as similar to your own thoughts? What a person thinks or says to himself has a major effect on how he feels and acts. The above are some of the self-defeating statements that you may be saying to yourself, without being aware that you do, which interfere with your functioning in everyday situations. Learning to overcome such negative thoughts will be one of the aims of stress-inoculations.

Most people have to face up to and cope with difficult and stressful situations in the course of their lives. Successful coping with stressful situations involves a number of stages:

  1. Preparing for the stressor
  2. Confronting the stressor
  3. Temporarily feeling overwhelmed by the stressor
  4. Coping with the stressful situation and rewarding oneself for having done so.

Whatever the stress producing situation (for example, speaking in public, eating in a restaurant, etc) you can help yourself through each of these stages by using a number of techniques that you will learn in the course of stress-inoculation.

The techniques that you are going to learn to help you cope with stressful situations are as follows

  1. Identifying your negative self-statements or thoughts and replacing them with alternative positive ones that will prepare you to meet the challenge of the stressful situation.  
  2. Identifying the first physical signs of apprehension, anxiety and fear, which may consist of increased tension in your muscle, heart pounding, breathlessness, flushing, 'butterflies in the stomach'. Then, as soon as you detect these physical symptoms, responding by quick physical relaxation using the method of diaphragmatic breathing.
  3. Learning to replace continuous thinking about past events and worrying about what may happen in the future by relaxing mentally through the use of pleasant imagery.

During the four stages of dealing with a stressful situation described above, you must learn to notice any self-defeating thoughts that enter your head and the accompanying physical signs of apprehension or anxiety. You should use these as a reminder, or 'bell-ringer' to use positive self-talk, diaphragmatic breathing, and pleasant imagery to help you cope with the stressful situation. The success of this method mainly depends on regular practice of the techniques of stress-inoculation that will be described in more detail later. Read through the rest of this article until you are completely familiar with the techniques and then put them into regular (at least twice a day) practice in any situation where your dystonia is especially problematic.


Positive instead of negative self-talk2

The effect of self-defeating thoughts and negative self-statements on how you can evaluate stressful situations and how it affects the severity of your dystonia, your attitude to your disorder, and how you feel and act can be shown by the so-called A-B-C model:

  • A stands for Activating event or stressful situation. An example may be meeting strangers.
  • B stands for Belief. That is the chain of thoughts and self-statements that go through your head in reaction to 'A'. An example of this may be the thought 'He will think I look odd', on meeting a stranger.
  • C stands for Consequences, which means the emotions and behaviours that result from 'B'. In the above example, when you meet a stranger and think to yourself 'He will think I look odd', you may start experiencing the physical symptoms of anxiety (heart pounding, breathlessness, flushing, etc.). These might lead you to ‘escape’ that is try to get out of the stressful situation as soon as you can. This ‘escape’ is not helpful because its long-term effect may be avoiding similar stressful situations in the future, as you wrongly expect that you will become anxious again or that your dystonia will worsen.

With this sequence of events, you have entered the vicious circle of Anxiety and Avoidance. This means, that since you experienced anxiety in a particular situation once, you expect that you will do so again in the future and therefore avoid that situation altogether. Avoiding the situation in turn results in your feeling more anxious about the situation in the future.

Negative thoughts and self-statements can become so automatic and habitual that you are not even aware of them and their effects on your dystonia and how you generally feel and behave. So the first major step is becoming aware of them. You can do this by listening to yourself with a 'third ear'. Catch yourself thinking negatively and, as soon as you can, write these thoughts down on a piece of paper so that you will not forget them. This act of self-monitoring, or writing your negative thoughts on a piece of paper will train you to become a good listener to your 'internal dialogue', that is what you think and say to yourself.

The negative self-statements or thoughts may be related to different aspects of you as a person, your future, reactions of others to your dystonia. Some general stands for Activating event or stressful situation. An example may be areas with examples of negative self-statements are given below:

Anger: Thoughts of being victimized or punished
"Why me?", "What have I done to deserve this?" 

Social Anxiety: Thoughts of what others think of you
"They think I am odd”, "I will lose control and make a fool of myself" 

Self-esteem: Thoughts about yourself as a person
"I am good for nothing”; "I cannot do the simplest things for myself" 

Helplessness: Thoughts of being unable to cope
"I cannot tolerate this pain anymore.”, "What will happen to me if there is no one to look after me?" 

Hopelessness: Thoughts about the future
"I have no future with this disorder."; "My life is ruined."

The second major step, once you have identified and written down your negative self-statements, is to examine them closely and logically, try to act as a judge and decide how true or close to the facts each statement really is. You will probably find that most of the negative thoughts or self-statements are based on wrong assumptions and 'black and white' reasoning. For instance, in the above example, the self-statement "He will think I look odd" is based on a number of faulty assumptions. These faulty assumptions are:

  1. That you can predict what other people think.
  2. That other people will judge you only on the basis of how you look.
  3. That your value as a person is determined by what others think of you.
  4. That you must be accepted and loved by everyone you meet.

The third major step, once you have closely examined your negative thoughts and found them to be based on wrong assumptions, is to replace them with alternative positive statements or thoughts that you could use instead to help you cope in stressful situations. Think of alternative positive self-statements that are appropriate to the situation, and are meaningful and convincing for you. Repeat the positive self-statements to yourself with force and conviction, and in time they will displace your negative thoughts. For example, the negative thought "He will think I look odd" when meeting a stranger can be replaced by the positive self-statement “I will explain what my dystonia problem is to him.”

In a similar way, you can virtually 'talk yourself' through a stressful situation. If you remember, reactions to stress were divided into four stages, and you can help yourself through each stage, by using appropriate positive self talk.
Examples of positive self talk appropriate to each stage are as follows;

  1. Preparing for the stressful situation:•    "What is it I have to do?", "I will develop a plan to deal with it.”, "I won't worry, and worry won't help anything."
  2.  Confronting the stressful situation: •    "I can meet the challenge.”, "One step at a time, I can handle it." , "This tension is a signal for me to use my coping strategies." , "I will concentrate on what I have to do." "I am in control; I will take a deep breath and relax."
  3. Temporarily feeling overwhelmed by the stressful situation: relaxation. •    "I will just pause and breathe deeply and slowly, as I am becoming tense.”, "I will label my anxiety from 0 to 10 and watch it decline.”, "I will focus on the task, I will be alright."
  4. Coping with the stressful situation and rewarding yourself for it:•    "I did it.", "It wasn't as bad as I expected.", “I made a mountain out of a molehill.”, "It is getting easier every time I try.”, "Well done.”, "Good progress."

The aim of this technique was to teach you to identify, write down, challenge your negative thoughts and then to replace them with positive self-talk that you can use when faced with a stressful situation. The stressful situation may be social situations, pain, driving, etc: You can use the same general approach for dealing with each of them.

Quick Physical and Mental relaxation

The mind and body work as a single unit and their systems (for example, nervous, cardiac, respiratory, muscular, digestive) are interrelated, so that changes in one system can bring about changes in the other systems. For example, when you are anxious or afraid, your heart is racing, your breathing is fast and shallow, you are perspiring, your muscles are tensed and mentally you are absorbed by fear. In this situation all your bodily and mental systems are on 'red alert' and aroused. At the other extreme, when you are in the semi-awake state, just before falling asleep, your breathing is deep, slow, and regular, your heartbeat is slower, your muscles are relaxed, and mentally you are relaxed and carefree. In this situation, all your bodily and mental systems are on 'shut down' and relaxed.

Learning to control one of these bodily systems can change the working of the other systems. The system that is easiest to control at will and quickly is the respiratory one concerned with breathing. Controlled breathing can be used to produce physical relaxation. We also have control over what we think or imagine and pleasant imagery can be used to bring about a state of mental

Physical Relaxation: Diaphragmatic Breathing
Research has shown that there is a strong relationship between feelings of anxiety and fast, shallow breathing. On the other hand, it is difficult to remain physically tense while breathing deeply, slowly, and regularly. You can use a method of breathing called diaphragmatic breathing, to relax quickly in stressful situations. The diaphragm is a muscle which separates the abdomen (stomach) from the chest. When the diaphragm is used during breathing, there is maximum flow of air into and out of the lungs.

1-Self help diagram 2

First, you need to prepare yourself for practising diaphragmatic breathing. Choose a suitable place and time of day, so that you are less likely to be disturbed or interrupted. Loosen any tight items of clothing so that your stomach and chest can move freely. Sit on a comfortable armchair or lie down on a comfortable surface. Get yourself in a comfortable position, uncross your legs and let your muscles unwind. Before you start the diaphragmatic breathing sit or lie quietly for a few minutes and observe the pattern and rate of your breathing.

Then start:

  1. Place one hand on your stomach and the other on your chest.
  2. Breathe in slowly through the nose so that the hand on your stomach rises gently as our stomach moves out. Do not push your stomach out; let it rise gently, as you take in a breath. Your chest should stay relaxed and move little. 
  3. Then breathe out slowly through the mouth so that the hand on your stomach falls as your stomach moves down. Again, your chest should stay relaxed and move very little while you are breathing out. As you breathe out feel your shoulders and the back of your neck loosening and sinking lower and lower as the air leaves your body. Imagine that each breath is washing tension out of your muscles. Say the word 'relax' to yourself, each time you breathe out. If you find steps 2 and 3 difficult at first, sit or stand in front of a mirror and practise.
  4. Once you have learned steps 2 and 3, you need to learn to breathe slowly, to develop the pattern of deep and slow breathing that is characteristic of relaxed states. To do this, add a slight pause each time after breathing in and a longer pause after breathing out. Alternatively, count to 3 in your head while breathing in, and to 4 while breathing out. Either method will help you slow down your breathing and deepen your relaxation.

Try not to hold or force your breaths during diaphragmatic breathing. At first, when you are learning this new pattern of breathing, it may appear rather artificial and difficult. With practice you will be able to achieve a natural, regular and comfortable rhythm of deep and slow diaphragmatic breathing. The first few times that you practise diaphragmatic breathing, if you feel lightheaded or dizzy, it means that you are breathing too deeply and too quickly. one way to get rid of the dizziness is to breathe into a paper bag for a short time. It may sound silly but it works.

Once you have mastered diaphragmatic breathing the next step of course is actually using it in stressful situations. Develop ways of reminding yourself to use diaphragmatic breathing. For example, if you tighten up and your dystonia seems to get worse when you are late or in a hurry, put a dot on your watch and each time you glance at your watch and see the dot, practice diaphragmatic breathing, Diaphragmatic breathing is a particularly practical method of relaxation, because once you have learned it. You can use it in any situation (walking, driving, at work, at home, in social situations) to relax quickly without others noticing.

Quick Mental Relaxation: Pleasant Mental Imagery
By practicing diaphragmatic breathing, your will learn to quickly relax your body, To achieve total relaxation, you need to be mentally as well as physically relaxed, Using pleasant mental imagery (picturing scenes in your 'mind's eye') is a quick way of getting mentally relaxed. Pleasant imagery is relaxing, because while you are totally absorbed in a positive mental image, you will stop worrying and thinking negative thoughts. You can carry out this imagery exercise after you have achieved a comfortable and regular rhythm of deep and slow breathing.

Close your eyes and clear your mind, Think of a relaxing, pleasant and enjoyable scene, This may be a scene that you remember (for example, an enjoyable day out on the beach or in the country) or it may be a scene of your own creation, experiment with a few images to find out which you find most relaxing, Once you have decided on the particular relaxing scene try to get a clear and vivid image of it in your head. See and feel everything that is part or the scene as if it was happening now. In doing this, remember that you have five senses.

First try to picture the scene in detail in your mind's eye. Picture it as clearly as you can, try to focus on one or two things in the scene. Then let your mind go bock, to picturing the whole scene. Now try to concentrate for a while on any physical or bodily feelings associated with the scene, There may be feelings of warmth and relaxation, Concentrate on these feelings and try to make them as real as possible, now think of any smells or scents that may be associated with the scene. For example, the smell of freshly cut grass in the country or the smell of the sea on the beach, Think of any tastes that you may associate with this relaxing scene and if there are any, try to remember and imagine them. Finally, think of all the sounds that are associated with this scene. For example, the relaxing sound of the waves of the shore, or the gentle whistle of a breeze on the shore.

To become proficient at quickly relaxing yourself physically and mentally, practice diaphragmatic breathing and pleasant mental imagery at least twice a day. Once you have mastered these skills, you can start using them in stressful situations.

Last reviewed February 2014

Disclaimer
The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.
The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.