Anneli Nivala
Themes: Research, Treatment and Experience
The Dystonia Days 2025 of the Finnish Association were held in Kouvola, South Finland in September. Some 50 members gathered to meet each other, to get new information about dystonia and to give and to deliver support and share their best practices, how to live with dystonia. The theme of the days were research, treatment and experience.
Researcher Aleksi Kokkonen (Turku Brainlab / University of Turku) and neurologist and physiatrist Taina Heinonen gave comprehensive and complementary presentations about dystonia. Definitions and new classifications were presented, namely axis 1: clinical characteristics; and axis 2: etiology and pathogenesis. The definitions of dystonia have changed over time. Latest definitions and classifications were gone through, ending up with the following:
“Dystonia is a movement disorder characterized by sustained or intermittent abnormal movements, posture, or both. Dystonic movements and postures are typically patterned and repetitive and may be tremulous or jerky. They are often initiated or worsened by voluntary action and frequently associated with overflow movements” (Albanese et. al. 2025) The neurobiological background of dystonia is still a mystery. Current thinking has shifted from viewing dystonia as a disorder confined to the basal ganglia toward a broader network-based perspective. Aleksi Kokkonen presented an overview of recent international research and highlighted recent
Aleksi Kokkonen
studies conducted at Turku Brainlab. Although the presentation included detailed medical terminology, it provided attendees with a clearer understanding of dystonia.
Anneli Nivala presented her Dystonia journey in a nice and vivid way. Her story included family life with a husband and three children. As methods of treatment, she has had botulinum toxin injections, physiotherapy and finally DBS surgery.
Anneli had to adapt herself to different kinds of jobs as her dystonia got worse. She gets strength for everyday life from her family, dogs and nature. What a touching patient testimony.
Jukka Sillanpää, Vice President, Dystonia Europe
Jukka Sillanpää, Vice President Dystonia Europe and Mikko Juutinen, President Finnish Dystonia Association
