When my dystonia first started I found it very debilitating and would not leave the house on my own. Fast forward a few years, and lots of rounds of botulinum toxin, and here I am travelling around Europe on my own!
I love my work with Dystonia Europe and it has given me lots of opportunities to travel and do things I never thought I would be able to do.
Travelling alone is something I always dreaded, even before dystonia struck, and even now sometimes I get a bit nervous when going somewhere I have not been before.
My trip to Paris to attend the Think Tank with the Dystonia Europe Board and our sponsors was one of those trips that I was nervous about.
I have been to Charles De Gaul airport before but only to change flights and travel somewhere else and I wasn’t alone. I felt rather nervous about finding my way through the airport to the train station and then of course get on the correct train to take me into Paris!
When I arrived at the airport I was awestruck at how big it is, however there were plenty of signs showing me the way thank goodness. I did eventually get to the baggage belt and then onto the train platform. I was still nervous about getting on the train but a lovely lady working on the platform assured me I was in the right place to get the train to Paris. I had been in touch with the other board members also arriving the same day so arranged to wait for Jukka who was arriving shortly after me.
We met on the train platform and got onto a very full train, we then stood all the way to Gare Du Nord station. I was so pleased I was with Jukka as even the train station was huge! Thanks to Jukka we found our way out of the station and then finding the hotel was very straight forward, phew!
It was lovely to see all my friends from the board and relax with them for a little while before we started work. In fact, unusually, we had no formal meetings until the next morning so our first afternoon/evening was all about catching up with each other and having a nice meal. Our restaurant was just next door to the hotel and the food was lovely, although when we first got there they didn’t have our booking! Thankfully Edwige managed to sort it out and of course we had a lovely meal.
The next morning our Board Meeting started at 9am and we had a great deal to discuss. We frequently meet online using Zoom but we always manage to discuss more and make more decisions when we meet face to face. Does anyone else experience that I wonder?
We had a busy morning discussing topics such as the current finances and how we are doing with our budget and whether we have enough to complete all the projects we are involved in. Funding is always a concern, we rely totally on funding from our sponsors, donations from our supporters and fees from consultancy work and of course that is not a guaranteed income. We had various discussions about how to generate more income and/or save money wherever we can.
Lunch break came around very quickly and we had a lovely lunch in the same restaurant next door to our hotel.
As soon as we were finished we got straight back to work and the afternoon went by so quickly we were all quite shocked when we realised it was 5pm! One of the discussions we had was about succession plans for board members and staff. We have a few who wish to retire in two or three years so it is important we have new people joining the board and/or being trained to join the staff. We got through most of the agenda but had to leave one or two topics for our next meeting.
There was just time to freshen up before dinner where we would meet our sponsors. We had 2 representatives from Ipsen, Susanne and Oleks and 1 from Merz, Petra.
After a short walk we found our restaurant and sat down for dinner. We had an amusing waiter who was very funny while taking our orders, it was a bit like being in the school canteen and the dinner lady shouting out ‘Put your hand up if you would like casserole!’. We all enjoyed a really lovely meal and walked back to the hotel feeling very full!
Our meeting with the sponsors was 9am the following morning and when I woke up I was still so full from the evening before that I just had a coffee in my room and didn’t bother going down for breakfast!
We all gathered in the meeting room ready to start at 9am for another very full agenda. This meeting was due to finish around 2pm so we could all get to the airport in time for our flights home. We did have plenty of time to discuss important issues like, how to attract more funding, what we could do to earn more from consultancy fees etc and how to progress our projects. Monika also gave our sponsors, Susanne, Oleks and Petra, a detailed update of progress on projects and increases in our social media followers. We also asked them for advice about raising awareness especially during September, Dystonia Awareness Month.
The meeting closed promptly at 2pm and some of my friends from the board had to leave straight away in order to catch their flights. We all said an emotional goodbye and wished each other a safe journey home. Some of the board had to get 2 or more flights to get home but this time I was lucky enough to have a direct flight from Paris to my local airport in Newcastle upon Tyne.
I travelled back to the airport with Monika and she got off the train one stop before me as we left from different terminals at the airport. My journey through the airport was much simpler than when I arrived and also much quicker, I was pleasantly surprised to find no long queues anywhere!
I found my departure gate then returned to the duty free shops to buy small gifts for my 3 grandchildren, Emily 9, Phoebe 7 and Alfred 3 months old. That didn’t take long so I got back to my departure gate in plenty of time.
The flight home was straight forward with no delays and when I landed at Newcastle I texted my husband John to let him know it was time to pick me up. However, when he didn’t arrive after 10 minutes (he was waiting close by) I checked my phone and realised I had sent the text to my brother by mistake and he lives in Plymouth which is 420 miles from Newcastle! My brother and I laughed at my mistake and then I contacted John who arrived 3 minutes later to pick me up.
I got home around 10:30pm and had to be at my son’s house for 7am the following morning to look after the girls and take them to school so it was straight to bed for me!
Our two days of meetings were really productive and I was so pleased to see everyone. It was sad to say goodbye but we will meet again in Timisoara, Romania at the end of May.
Gill Ainsley, Secretary and Vice President, Dystonia Europe
