End of April 12 physiotherapists from around the UK, came together at the Walkergate Park Hospital in Newcastle for a 2-day course about dystonia and physiotherapy.
Course leader Johanna Blom, physiotherapist from the Skane University Hospital in Malmö Sweden welcomed everybody. After a round of presentations the day could start.
First session was on Dystonia and Plasticity. The participants watched a video with Professor Espen Dietrichs, University Hospital of Oslo in Norway, explaining what plasticity is and what it means for dystonia patients. Plastic changes may play a role in the cause of dystonia but it also plays an important role for the treatment of dystonia. The brain can relearn. You can see the video here: https://youtu.be/Hqbz3pTit_M
Johanna moved on to give a short summary of what dystonia is and reminded participants about the dystonia definition (Albanese et al 2013): ”Dystonia is a movement disorder characterized by sustained or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. Dystonic movements are typically patterned, twisting, and may be tremulous. Dystonia is often initiated or worsened by voluntary action and associated with overflow muscle activation.”
Johanna explained the difference between stable and unstable dystonia, based on her own observations. For a patient with stable dystonia the dystonia calms down when moving the arms back and forth. Doing the same exercise when you have unstable dystonia the symptoms worsen.
After coffee three dystonia patients joined for the hands-on sessions. The participants were divided into three groups to assess a dystonia patient. They looked at the history of the patient’s dystonia, what muscles are involved, what makes the dystonia worse, what makes it better, etc.
A sandwich lunch was served and then we were back in the physio room and each group gave a summary and demonstration of the patient’s assessment.
The day finished back in the lecture room where Johanna gave an overview of different forms of tonus.
Second day focused on physiotherapy treatment. There are many types of dystonias with various patterns and therefore it is important to have an individualised training programme. Some strategies for training are to start in the easiest position, use references for diversion, and to use mirrors for feedback and body awareness. It is important with a home training programme for the patient, since repetition is the basis for improvement.
After the morning break the dystonia patients from the day before joined again. Based on the analysis of the previous day it was time for the course participants to work with the patients and find suitable exercises for them. Each group showed four different exercises they thought would be good for the patient. Johanna added input and feedback. We thanked the two patients who had joined to support as live dystonia models for this course.
It was two very fruitful days with lots of knowledge sharing and interesting discussions. We thanked all participants for joining the course and for wanting to learn more about physiotherapy and dystonia. And of course a big thank you to Johanna for sharing her expertise in the field, and thanks to Dave and Clair at the hospital who so kindly offered the venue.
We are already planning for the next course. It will take place in London early 2026. More information will be available soon.
Monika Benson, Executive Director, Dystonia Europe
