We have filmed a video Q+A with Dr Harbinder Sandhu, researcher at Warwick Medical School. Along with her team, she has recently completed a small scale research project funded by the Dystonia Society to help develop a programme which specifically targeted the emotional wellbeing of people living with dystonia, using well-tested principles that target areas such as unhelpful thinking and mindfulness. More information on the project and its outcomes can be found here: http://www.dystonia.org.uk/index.php/30-news/625-update-on-warwick-research-into-managing-non-motor-symptoms-of-dystonia
Thank you to all those who submitted questions - unfortunately due to time restraints we have been unable to ask all the questions and we have grouped some questions together. If you still have questions please do contact our Helpline on 020 7793 3650.
So that you can find individual questions easily, we have included the timings for each question below:
2:00 – Can you tell us a little bit about your research project and what helped inform it?
12:46 – What types of dystonia did participants in your study have?
13:27 - Is there any relationship between the type of dystonia an individual has and the non-motor symptoms they might experience?
14:27 - What difference do you think your research will make to people with dystonia?
15:25 - How effective do you feel Mindfulness is?
16:24 - Do you think Mindfulness is here to stay or is it just a current trend?
20:03 - I feel alone and isolated because my dystonia makes it hard to leave the house. Is this normal?
22.11 - I have Cervical Dystonia and I swim twice a week. I feel better in spirit and health after swimming, but my neck feels worse the next day. I have taken 2 weeks off from swimming but the neck is worse. Should I just press on and swim for the sake of my sanity?
24:06 - How necessary is an understanding of dystonia when offering support with non-motor symptoms? (ie for physio, CBT, pain management etc.)
25:11 - Since developing dystonia I noticed that I have also started to feel anxious and depressed and I find it hard to talk to my family about it. Do other people with dystonia feel like this?
28:13 – What are the next steps with your research project?