Some of you will already know about the MyDystonia App which has been developed by Dystonia Europe.
It is an electronic diary to record your symptoms, daily, weekly or how ever often you want to.
From the information you put into the app you can create a report of your symptoms to show your consultant.
This can be in text or a graph. Personally I prefer to show my consultant a graph of my symptoms as he can very easily see when I have had the best benefit from my botulinum toxin injections.
It is also very easy to see when my symptoms have been temporarily worse or better and with other information you can record you can analyse this to see why your symptoms were worse or better. For example you may have had a stressful day, you may have done something unusual for you or you may have been exercising.
The app is currently being update to version 2.0 which promises to be even better than the original version!
The app is free to download onto your computer, tablet or smart phone and your data is kept private and confidential. At some time in the future the data will be used for research purposes but it will be completely anonymous, you personal details will not be shared with anyone or any organisations etc.
I highly recommend you give it a try and please let us know what you think by using the help function within the app.
Dystonia Europe host a conference annually in various parts of Europe and this year it was held in London, England.
We decided we mustn’t miss the opportunity to attend as it was so close to home.
Three members of the A.D.D.E.R. committee attended, myself (Gill Ainsley), Mel Moore and Maureen Moore.
Maureen and Mel’s expenses were partly funded by A.D.D.E.R. with themselves paying for some of the cost, my expenses were covered by Dystonia Europe and myself, so no cost to A.D.D.E.R. for my place at the conference. We all felt this would be money well spent and I hope you will all agree that it certainly was value for money!
We arrived at the hotel on the Friday lunch time and the first business was the Dystonia Europe General Assembly. This was a formal meeting to discuss the annual business report for Dystonia Europe and to elect the new/existing members onto the board.
During the meeting the new board was elected which included myself as secretary.
I will of course carry on with my duties for A.D.D.E.R. as treasurer and administrator.
Once the business was concluded we checked into the hotel, freshened up and joined the rest of the delegates for a dinner cruise on the Thames.
We had a great night with lovely food, a beautiful view and a glass of wine or two!
The next day was an early start, 7:30am to help get everything set up. My main role for the day was to demonstrate the MyDystonia app but I was also asked to give out the t-shirts to all who attended the conference and to help generally to get things set up.
Maureen and Mel’s main job was to set up and man the A.D.D.E.R. stand. They spent the whole day giving out A.D.D.E.R. leaflets and answering questions as well as helping me to set up and looking after the MyDystonia app stand while I took comfort breaks.
The presentations during the morning concentrated on Dystonia and Childhood, moving on to Dystonia in adolescents and young adults, then finally in the afternoon dystonia in adulthood was discussed.
The speakers included a mum of a 7 year old girl with dystonia, a speech therapist, an occupational therapist and a very experienced consultant surgeon who does Deep Brain Stimulation surgery on children, Dr Jean-Pierre Lin from Evelina Children’s hospital in London. These were all before lunch and after lunch the speakers included some inspiring young adults talking about their own journey with dystonia and what they have achieved against all odds.
There was also a ‘Roundtable’ of specialists on the platform talking about their own specialism within the treatment of Dystonia and answering many many questions, these included specialists in Neurotoxin, Deep Brain Stimulation, Non-motor symptoms of dystonia, mental health and rehabilitation.
At lunch time we all gathered together with our ‘Jump for Dystonia’ t-shirts on and had a group photo taken by the official photographer Stephan Rohl.
Later in the afternoon the winner of the David Marsden Award 2019 was announced and Professor Maja Relja from Zagreb talked about the Europe wide dystonia survey which you may have taken part in called ‘A survey for change”.
Adam Kalinowski presented the MyDystonia app and talked about the latest version currently being developed, then the conference was brought to a close by the retiring President, Merete Avery and Monika Benson the executive director.
Throughout the day there was a BBC crew there filming a documentary about dystonia, I’m sorry I don’t know any more details of that but please keep an eye out for it appearing on TV!
That evening after a quick shower and change Maureen, Mel and I attended the course dinner where Monika and Adam thanked the three retiring board members for all their dedication and hard work.
As with the night before, we had a lovely social evening with gorgeous food, great company and a glass of wine or two!
The final part of the weekends activities was a work shop on the Sunday morning.
We split into teams and worked on the strategy for Dystonia Europe led by a strategy consultant Noemi Ambrus.
The three of us enjoyed the session although we did admit it stretched our brains a bit!
After a quick lunch we left the hotel to return to Newcastle and our families, we were all very tired after such a busy weekend but we also felt we had learned a great deal and felt proud to have taken part in such a well organised event.
Will we attend next year? I certainly hope so!
by Gill Ainsley
A.D.D.E.R. Treasurer and administrator
Dystonia Europe Secretary.
All photographs by Stephan Rohl www.stephan-roehl.de
If you would like to watch videos of any of the presentations please use the following link:
Or, go to you tube and search for Dystonia Europe, Ddays 2019.