September 3, 2023

Dystonia Days Meeting

We were all looking forward to meeting in Dublin on Wednesday 31st May, after the covid pandemic prevented us from meeting for more than 2 years we have a new appreciation of meeting in person!

My flight to Dublin from Newcastle, England was very short and comfortable, on arrival at Dublin airport there were no queues for passport control and even my suitcase came onto the belt very quickly! A short bus ride into Dublin and I was standing in the hotel reception ready to check in.

Our first board meeting began as soon as I arrived so no time to unpack yet! It was lovely to see most of my friends from Dystonia Europe (DE), there were still two more to arrive, Edwige who arrived a little after me and Catalina who arrived in the evening. This meeting was to finalise any last minute preparations for our activities over the next few days as well as discussing our usual business. We finished the meeting at around 6:15pm then we had 45 minutes to unpack, freshen up and get ready for our first evening meal together in The Quays Restaurant, Temple Bar. We had a lovely walk to the restaurant along the river side and crossed over the Halfpenny Bridge. We all enjoyed a tasty meal there with very big portions, no room for dessert! We then had a pleasant walk back to the hotel along the riverside and back over the river to the Riu Plaza, The Gresham Hotel.

The first day for DE began around 9:30am at the 6th International Dystonia Symposium in Croke Park, Monika started her day much earlier arriving at Croke Park around 7:30am so she could set up our stall with DE information and meet a few people, making connections. The conference was held in a huge room and almost all seats were full, I don’t know how many attendees there were but maybe around 400! We were sat in the back row and the presenter looked tiny, a bit  like being at the back for a pop concert. We listened to some excellent presentations on topics such as Guiding Principles for Treatment, Experimental Drug Therapies, Types of Botox, Patient Experiences, Methods of measuring brain activity, Immunology (survey had revealed a link between Cervical Dystonia and thyroid disease) and many more topics, all in one day!

A lot of the medical/technical information was above my head but I understood enough to get the gist of what these experts were talking about. It was lovely to see our advisor and friend Prof Maja Relja take an active part in the conference. Each speaker had slides to illustrate their presentation and there were several screens making it easy for everyone to see. In fact one screen was on the back wall and as we were in the back row Jukka cleverly suggested we turn our chairs around! We did get a few funny looks but when others realised what we were doing they also turned their chairs around to get a better view of the slides. Thank you for suggesting this Jukka!

We had a lunch break of course but while eating lunch we listened to a presentation sponsored by Merz on Cervical Dystonia and Pain. This was very interesting and I felt like they were describing my own pain, especially the pain that starts in my shoulders and shoots down my arms. Prof Albanese and Prof Jinnah also talked about the link between botulinum toxin treatment and pain relief.

There were more presentations to listen to after lunch but I have to admit that my brain was full at this point. I did listen to another few presentations but didn’t really take them in although I was interested in Dr Balints talk about Dystonia in Rheumatology, another autoimmune disease so maybe the link is similar to that with thyroid disease? At about 3:30pm my brain was beginning to rebel and my concentration level was zero so I decided to return to the hotel for a rest, a few other members of the board joined me as they too were experiencing very low energy levels. We got back to the hotel and enjoyed a drink in the sunshine before going to our rooms to rest and get refreshed ready for another big day the next day.

That evening Monika and Edwige had a business meeting over dinner so the rest of us walked to a local pub called The Black Sheep. Our waiter was new (his first day) he messed up our order and Sissel almost got 4 pints of beer just for her! We managed to change the order, phew, but then realised he had not ordered any of our food. The manager was very helpful and put our food order in as a priority and gave us a free round of drinks. When it eventually arrived the food was lovely.

I always get a little nervous for this meeting as the formalities are so important and I take the minutes so want to make sure I record every item and every decision correctly. The business side of the meeting went very smoothly and I managed to pay attention throughout! After the formal meeting was closed we enjoyed presentations from Catalina about her home association ‘Children’s Joy’ and all they have achieved. Alain from Amadys told us about their structure and how they help their members and John from the Norwegian Dystonia Society told us about their work and how they integrate members who need help with running their local branch.

All 3 presentations were well received and personally I was very impressed with all of them. They all help dystonia patients in different ways and all provide exceptional support to their members. We all know that this doesn’t just happen, it takes a lot of hard work and dedication, and we know that all our member organisations work hard to support dystonia patients.

Presenters after the formal part of the General Assembly:

From left: John Berget, Catalina Crainic, Alain Faucon

Friday evening we all met in the foyer in time to get a coach to The Taylors Three Rock Hotel which is about 40 minutes outside of Dublin. The journey was so lovely moving from the city to a more rural area and I was very impressed with the lovely houses and gardens, it helped that the sun was shining too!

We got to the venue and took our seats where we enjoyed a 3 course meal while being entertained by the in-house singers and dancers. I was hoping they would do some traditional Irish dancing and they did not disappoint, they were amazing. The young men and women must be extremely fit, have you seen how fast their feet move?!! The show was excellent but over too soon, then we got back on the bus to go back to our hotel. By the time I got into my room I was exhausted! Not only am I getting older (who isn’t?) but since having dystonia I tire more easily so it was good to get to bed for a good night’s sleep. As a bonus we weren’t starting til 9:30 the next morning, ooh a lie in!

After breakfast on Saturday I met with Monika and Edwige and we got a taxi to The Mansion House for the Dystonia Patient Meeting organised by Dystonia Ireland. The 3 of us got our stall set up with leaflets and information and got ready to enjoy the conference. We had presentations from various medical professionals from Australia, Ireland, United Kingdom and USA to name but a few. They told us about brain plasticity and how brains can be re-trained to ease dystonia symptoms, how dystonia causes pain and affects sleep, the history of dystonia, research, the rarity of dystonia and classifications of dystonia. These presentations were really interesting and easy for me to understand, I was even brave enough to put my hand up and ask a question! When the morning presentations were all done, Edwige spoke about Dystonia Europe and all the projects we are involved with. Monika presented our Dystonia Awareness Campaign for 2023 which is a series of videos about living with dystonia. Our late president, Adam, had worked on the development and production of these videos and they were his idea in the first place. The videos were met with appreciation and personally I felt very emotional, not only did I feel a true connection to patients in the videos but also of course it was emotional to see Adam in one of the videos, we miss him a great deal.

We were served a very nice lunch of soup and sandwiches and I have to say the selection of biscuits were just my cup of tea! The presentations carried on after lunch with information about DBS, longer acting botulinum toxin, cognitive degradation particularly in recognising facial expressions and quality of life.

The conference ended with Maria Hickey from Dystonia Ireland thanking everyone for their help and involvement, then Monika presented Maria with a well deserved bouquet of flowers. Maria and Dystonia Ireland had worked very hard to pull this conference together and I am sure everyone present will agree it was a huge success.

Finally our big celebration was here! Saturday evening was our conference dinner and Dystonia Europes’ 30th Anniversary! Definitely something to celebrate. We had the meal all planned out and my task before we got there was to organise balloons and helium but the less said about the helium the better, we ended up using hand pumps to blow up all the balloons and thankfully the restaurant staff helped us. Our celebratory dinner went very well, the food was delicious and we had a glass or two of wine. Dystonia Europe received gifts from the Norwegian and Danish organisations which was very thoughtful and much appreciated. Edwige did a small talk about how proud we all are of 30 years of helping dystonia patients lead a better life. Professor Maja Relja, who was there in Spoleto in 1993 when it all started, gave a nice speech about the founding of EDF, now DE. Myself and Monika led ‘Happy Birthday’ and everyone joined in even though ‘Dystonia Europe’ didn’t really fit into the song ha ha.

We all retired to our rooms with full stomachs and full hearts, I always make friends at our conferences and this one was no exception.

On Sunday most of our delegates were travelling home or on to a holiday in Ireland and I hope everyone had good journeys, wherever they were going.

The Dystonia Europe Board had a quick meeting to appoint/agree positions on the board after the elections on Friday and then we had a meeting with one of our sponsors. Finally by Sunday lunch time we were all finished and ready to go home.

My journey is usually one of the longest amongst board members but from Dublin to Newcastle is only a 50 minute flight so a nice short journey for me this time……..apart from the 2 hours delay!

Last year in Copenhagen my smart watch told me I had walked over 50 000 steps, I thought this year it would be much less, it was just over 45 000 steps!

I hope you all have a good and healthy year and I look forward to seeing you all again in 2024.

Take care all
Gill Ainsley, Secretary and Vice President Dystonia Europe
DE Board and Staff Back row: Monika Benson, Jukka Sillanpää, Merete Avery, Edwige Ponseel Front row: Sissel Buskerud, Gill Ainsley, Catalina Crainic