October 25, 2019

Norwegian Dystonia Association, October Meeting in Ålesund.

12 October the Norwegian Dystonia Association  (NDF) held it’s meeting in Ålesund, a charming small city on the west coast of Norway.

The leader of NDF Johan Arnfinn Warvik welcomed all and  informed about the work of the organisation.

NDF has a focus on many areas, like networking with the National Health providers, Neurologists, Physio-therapists and Member activities both National and local. The organisation has 5 local groups around the country, that have meetings twice a year.  Then there are National meetings twice a year with approximately 50-60 participants from all around Norway. It is estimated that about maybe 2500 – 3500 or more people have dystonia in Norway, but as in many other countries, the numbers are probably underestimated, due to that many wait many years to get the proper diagnosis and treatment.

In Norway there are about 600 members which is about 25 percent of people affected by dystonia, which might sound little, but compared to other patient organisations are very good.  The population in Norway is close to 5 million people.

Johan Arnfinn Warvik introduced Oddgeir Bruaset, a  Author and Broadcaster, who  also was the host  of a Norwegian TV Production, about how some people have lived and still live in very remote places in Norway.

Bruaset received the Helbergs price this year for a spectacular way of contributing to keep memories of culture in the mountain areas and how he with a sincere enthusiasm share how much the people cared and depended on each other to thrive and to survive.

There is a connection here between the caring for others in the same situation, like people within the dystonia communities work for awareness and support, and share ideas of coping and so much more. Many voluteers devote their time to do this.

Today we have Social Media which these people did not have, yet they stayed in touch by signals like ligthing a fire and then «neighbors» would travel by boat or walk, which could take more than a day, to see if they could help and support. The forces of nature,  sometimes lots of snow and cold weather, would not stop them.

The stories of Oddgeir Bruaset left the audience very moved and thoughtful. Oddgeir also said that many of the elders he had interviewed, that grew up in these remote areas, experessed that they were happier back then, they did not have much, but they had a strong community.  «Together we are stronger» .

Then we were divided into groups, depending on type of dystonia, like Blepharospasm, Cervical Dystonia, Generalized dystonia, DBS Treatment and more.

Since Dystonia is a very little known and understood disorder, then it is very important to meet, share and learn coping strategies from others with the same challenges. In addition maybe the most important thing is to meet someone who knows what challenges you face as affected by dystonia.

Then after a break, we went on a bus sightseeing tour.   The Norwegian Dystonia Association had arranged a sightseeing tour in the area partly in Ålesund, but more so around the city of Ålesund.

Ålesund is partly built on islands, and we visited 3 or 4 of these islands.   The guide had a lot of interesting history stories to tell about the area. We also had a stop where we got out and enjoyed the beautiful view from Aksla.

After the bus trip we enjoyed dinner together at Scandic hotel Ålesund.

Merete Avery

Operations Manager

Dystonia Europe