Saturday 26th April 49 members of NDF (Norwegian Dystonia Association) gathered for a member meeting and the Annual General Assembly at Quality Hotel Olavsgaard at Skjetten, just outside Oslo, Norway.
From left: President NDF Johan Arnfinn Warvik, Vice President Sissel Buskerud and Monika Benson ED Dystonia Europe
Vice President of the local association NDF Agder, Randi Corneliussen started the meeting with a welcome song called “Spring has arrived” , a great initiative from Randi that was very popular with the audience.
Next the President of NDF Johan Arnfinn Warvik, presented a summary of the activities from the last year. One of the activities was “likeperson training” in Stavanger.
Likeperson means directly translated “equal person”. In a patient organisation in Norway it means a volunteer who has dystonia and has undergone training through NDF and can relate to how it is to be diagnosed, have the symptoms of dystonia, how to adapt to a “new life” with a chronic illness and much more. A “likeperson” can be contacted through NDF by persons who have received the diagnosis or think maybe they have dystonia to learn more from a patients’ perspective. The most important thing is to listen. “Likeperson” is an important part of a patient organisation Johan Arnfinn stated.
During the last year new physiotherapists have been certified for treatment of patients with dystonia. This was made possible through training classes that have been arranged in cooperation between Merz Therapeutics Nordics and NDF.
NDF also works to increase the activities among members locally where they live, both through the existing local associations under the national NDF and by establishing new local associations. All these local associations are a part of and “under” the National association. Local meetings can be held even at cafes just to meet with others facing the same challenges.
Also meetings with sponsors and stakeholders have been a central part of NDF’s work.
From Sweden Mats Nyberg, President of SDF (Swedish Dystonia Association), Ulf Borg, Treasurer SDF and Monika Benson, Board Member SDF and Executive Director Dystonia Europe were present at the meeting.
Monika Benson gave a presentation during the meeting about the work and activities of Dystonia Europe. Dystonia Europe is an umbrella organisation that has 21 member organisations in 20 countries in Europe and represents about 20 000 members. Monika informed us about projects such as the podcast the Positive Twist and the annual David Marsden Award that is awarded to a young researcher in the field of dystonia. Dystonia Europe is present on several social media channels such as Facebook, Instagram, YouTube and LinkedIn.
Another important project to both spread information and to give better treatment to patients is the project “Dystonia Physio Hub” for physiotherapists with knowledge of dystonia. With this platform the physiotherapist can create individual exercise programs for the patients.
Monika concluded her part by encouraging the participants: “We must not lose hope for better treatment or a cure”.
Last but not least, before social activity and dinner, the participants were divided into groups based on the different diagnosis within dystonia: cervical dystonia, spastic dysphonia/laryngeal dystonia and those who have had DBS surgery. Interesting experiences and stories were shared among the participants. To keep up hope and continue doing what you like, even if it may mean that you will have to rest a day or two afterwards was mentioned.
“Taking smaller breaks throughout the day and lying down helps”, said Reidun. “Then up and out or do something you enjoy.” Reidun Ulvin is leader for one of the local NDF organisations under the national organisation.
The President Johan Arnfinn Warvik concluded that there are many ways to cope with dystonia, it shows how valuable it is to participate at meetings like this, to connect with others who face some of the same challenges and to be able to support each other on how to handle dystonia on a daily basis.
A summary from the articles regarding the GA and Member meeting in the NDF Newsletter Dystoni-Nytt.
Merete Avery, Operations Manager Dystonia Europe
