Saturday, April 30, 2016

Self Help for Dystonia

I am finding this dystonia website incredibly helpful and wanted to share these techniques. It is easy to understand in theory, but different in practice when you have dystonia. It is so easy to get caught up in the moments of distress and anxiety. I can tell when I am stressed and frightened immediately because my shoulders turn to stone and my head starts to tremor.
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.