Sometime last year board member Catalina persuaded us to hold our annual General Assembly and Dystonia Day conference in her home town of Timișoara, Romania. After months of careful planning the day to travel finally arrived on Wednesday 29th May.
I left home at about 3:30am for the 6 o’clock flight to Schipol, Amsterdam. At Schipol I had the same problem I usually have there in that my transfer time was very tight and I had to join the huge queue at the Schengen border. It always makes me feel rather nervous that I will miss my flight, but I have to say I haven’t missed a flight yet and made it time for my next flight to Bucharest. I had a bit more time in Bucharest airport but wished that I hadn’t as it is rather boring just waiting around for a flight. I guess there must be a happy medium for time spent in an airport but I haven’t found it yet.
Last flight of the day was to Timișoara, where Monika, Sissel and Jukka were waiting for me. It was so lovely to see them again! We shared a taxi to the hotel, Hotel Timișoara, which is lovely. We were soon checked in and met Merete who had arrived the day before and of course Catalina who lives in Timișoara. Unfortunately Edwige couldn’t make it to this event but we will see her soon I am sure.
Our first evening was very relaxed and Catalina took us to a lovely restaurant in the town. We walked to the restaurant and discovered some of the beauty of Timișoara. It is a very pretty town with lots of important history. I must admit I was so taken with the story of Timișoara, that I am going to buy a book about it when I get home as I would love to know more.
Our waitress and Catalina suggested we try the sharing platter to give us a taste of a few different Romanian dishes. We all agreed but then we dithered about the drinks and the poor waitress ended up completely confused, she did well though and brought us exactly what we wanted.
The platter arrived and our eyes almost popped out of our heads, it was huge!! Even with five of us sharing we knew we wouldn’t be able to finish it. There were all sorts of meat dishes, mostly chicken and pork but all cooked differently. It also came with a salad and the whole dish was delicious! We were right though we couldn’t eat it all so Catalina got a take away box and took some for her husband Marius.
As we were too full for any dessert we took a slow walk back to the hotel with Catalina pointing out places and buildings of interest, including the building where the Romanian revolution started which of course resulted in the communist government being overthrown and a democratic government taking over. I can’t imagine what it must have been like to live in a communist country and then to need a revolution to make conditions better. The Romanians who took part must have been very brave and sadly some of them lost their lives as did a number of children.
We got back to the hotel dodging between the raindrops and said our goodnights. The rooms are lovely and I slept quite well.
Breakfast was very nice, I wasn’t hungry after our feast the night before but I managed a slice of toast and of course the all important cup of coffee!
We met for our planned board meeting at 09:30 ready and willing. As usual we had a great deal to discuss so we got on with it as soon as everyone arrived. The morning was really to finalise all arrangements for the General Assembly the following day and the Dystonia Day conference the day after that. Lunch time came as a welcome break and we had a lovely walk to another restaurant where we had a light lunch, most of us were still full from the feast! It was good to have a break and chat with all my friends from the board although we missed Edwige of course.
We didn’t sit talking for long though and we made our way back to the hotel ready to continue our meeting.
There was a lot of discussion, planning, assigning tasks etc and we finished the meeting around 4:30, just time for a quick freshen up and then we met in the lobby at 5pm to go to Catalina and Marius gym, MC GYM Motion.
We were given a warm welcome there from Marius who explained how the gym had started and that they support dystonia patients along with MS and Parkinson’s patients. The patients can go every Friday to use the gym with expert guidance from the team, free of charge! We all know that exercise is good for us but using a gym can be expensive. Marius and Catalina have given all their patients the ability to exercise no matter what it costs. Catalina also has an office there where she practises her psychology helping many patients to cope with their problems.
After the visit to the gym we went out for dinner to another lovely Romanian restaurant and another lovely meal. We were back at the hotel by around 9:30pm and we were all very tired after a long day so retired to bed as soon as we got back.
The following morning we had a ‘morning off’, this is unusual when we meet so it was lovely to be able to take advantage of that and explore the town a little. After all the food I had eaten over the previous 2 days I didn’t want any breakfast so I relaxed in my room with a coffee before I got ready.
Catalina had recommended an ice cream parlour so as soon as I was ready I went out for a lovely walk to take in some of the sights and ended up at the ice cream parlour where I enjoyed a small tub of my favourite ice cream.
Our members were beginning to arrive in Timișoara and it was lovely to see them all, it was a reunion of old friends and some new friends too.
The General Assembly started at around 12 noon with registration and a light lunch of sandwiches, fruit and drinks. Then we got straight down to business. The meeting was opened with a video of Edwige apologising for not being there and welcoming everyone to the meeting.
The business side of the meeting went very well and all our news etc was well received by our members. During the ‘Any Other Business’ section we got lots of really good comments and suggestions on how to raise funds etc.
The meeting closed around 3:30pm and once we had tidied the room we all went to freshen up for our evening activity.
We met in the foyer at 5pm and got on a coach to visit a winery and sample some wines.
The Cramele Recas winery is lovely and in a beautiful location, our guide was very knowledgeable and also funny, she gave us a tour and then sat us down for the wine tasting. We tasted 4 or 5 different wines all of which were lovely but my favourite was one of the white wines. There was a huge glass in the middle of each table for people to pour away any wine they did not want once they had taken a sip to taste it. As I don’t drink a lot I just tasted each one and poured the rest into the big glass, I then enjoyed a full glass of the white wine I favoured with my meal.
After yet another lovely meal we all boarded the bus to go back to the hotel. I don’t know what everyone else did with their wine but there was no singing on the bus so I guess no-one had a lot to drink, ha ha.
Our Dystonia Day conference started promptly at 9:30am on Saturday 1st June, we had presentations from The European Research Network, Rare Neurological Diseases, this prompted a debate about how rare dystonia actually is, some forms of dystonia are the 3rd most common movement disorder but some like blepharospasm and myoclonic are rare.
We then enjoyed presentations from the European Federation of Neurological Associations and the Boston Scientific Foundation. After a short break we had an interesting presentation by Prof Simu, a neurologist from Romania who treats dystonia. It was interesting to hear how she does her treatments and looks after her patients, she is a very caring lady.
Next was a recording of a drama depicting the journey of a cervical dystonia patient from onset of symptoms, through diagnosis and treatment to living with the condition. It was based on the Cervical Dystonia Patient Journey project we completed in collaboration with Ipsen. The video was around 30 minutes long and I think everyone in the room could identify with it. The actress who wrote and performed the drama really understood the journey that most of us have been on. I have to admit I shed a tear or two, it was very emotional.
We then heard from Oleks Gorbenko from Ipsen on how they work with Dystonia Europe and how beneficial that work is to both Dystonia Europe and Ipsen. By this time we were feeling hungry so Oleks didn’t get many questions! Of course any one of us could ask him questions during lunch if we wanted to. The hotel provided a very nice 3 course lunch which gave us all the energy we needed to continue into the afternoon.
The afternoon session was mainly for us to hear from some of our member organisations and we had presentations from Catalina from the Association of Children’s Joy in Romania, Vidar from the Norwegian Dystonia Association and Julia from Dystonie und du in Germany. It was very interesting to hear how the different organisations work, how they get funding, members, create newsletters etc. Needless to say there is a lot of hard work that goes into running a patient organisation and of course most of us are volunteers with other commitments to keep up too.
We then had a fun (but also informative) presentation by Laria from Timișoara who works alongside Catalina and Marius in their gym. She is an expert in mindfulness and uses Virtual Reality to help her patients. Those who wanted to tried out the Virtual Reality headset and found themselves in idyllic settings, some with bird song or the sound of waves on the shore. It was a lovely way to finish the meeting.
After another quick freshen up and we met again in the lobby ready for our walking history tour.
Our guide took us walking for around 1 hour and explained some of the history of Timișoara. As I said earlier the history of the town is so interesting and varied that I would like to learn much more about it.
Our tour finished at a lovely restaurant where we all enjoyed yet another tasty 3 course meal. After 3 days of lovely Romanian food I will need to go on a diet when I get home! I said goodbye to everyone at the end of the meal as my flight was early the next morning. I was sad to say goodbye to everyone but was looking forward to going home.
My journey home was very long with a 7 hour transfer time in Schipol so although I left the hotel at 6:30am it was almost midnight when I finally arrived home. As usual my lovely husband was waiting for me at the airport. It was so nice to see him after my long journey, usually when I get back from a Dystonia Europe trip I talk non-stop until I have told him all the things I have seen and done but this time I was just too tired. I did talk non-stop the following morning!
I hope you all enjoyed your time in Timișoara as much as I did and I hope you all enjoyed the General Assembly and the Conference day and maybe learned a few things too, I certainly did.
See you all next time!
Monika Benson and Gill Ainsley
Gill Ainsley
Secretary and Vice President
Dystonia Europe
