The first sessions will take place in Glasgow and Edinburgh at the end of this month – if you’re interested in attending these you can contact Dorothy Chisholm on 0845 803 1006.

The programme has been developed in response to feedback from our 2012 treatment questionnaire. Ongoing forms of treatment, such as botulinum toxin injections, are helpful for treating the symptoms of dystonia but they are still not perfect and may in some cases only be providing minimal relief. As dystonia is a long-term condition which often impacts many different areas of a patient’s life, it is often important and beneficial for people to develop coping strategies and techniques which can help them to effectively manage their condition.

The Scottish pilot will be led by Dorothy Chisholm, our Scottish Regional Officer. We have also recruited a new Self Management Officer, Gladys Anyanwu, who will run the North West pilot and also work with our helpline team. We are pleased to welcome her to The Dystonia Society UK office and are excited to see how our self management programme can be developed in the coming year.

Dystonia management is not simply education about dystonia, rather it helps people to develop the confidence and motivation to take control of their condition by building their skills and knowledge. This means it takes into every aspect of the individual’s life. Topics covered include:

Managing treatment

  • Understanding dystonia
  • Knowing treatment options
  • Agreeing a healthcare plan
  • Helping make the treatment work
  • Developing good communication with your healthcare professional(s)

Care of the Body

  • Physiotherapy
  • Improving/increasing physical exercise
  • Diet and healthy eating

Managing feelings

  • Understanding how emotional and physical symptoms inter-relate
  • Finding ways to reduce stress and anxiety
  • Exploring distraction/mindfulness techniques

Managing activity

  • Coping in the workplace
  • Making lifestyle changes at home
  • Managing social activities

Getting support

  • Accessing information on various organisations/support services
  • Linking up with other people with dystonia