Raising awareness of essential tremor in Finland
Marjo Lehtinen from The Finnish Parkinson Association speaks about the prevalence of essential tremor and developments in Finland.
Greetings from Finland! The Finnish Parkinson Association which is an umbrella organisation for different movement disorders in Finland, has launched an Essential Tremor Project (2020-2023). The goal of this project is to raise awareness of essential tremor, and to provide information, resources and peer support for particularly the working-age people with essential tremor.
It is estimated that there are about 50,000 people with essential tremor in Finland, but the estimates vary, and the number could be considerably higher (cf. the population of Finland approx. 5.5 million). People with essential tremor are treated mainly within the Basic Healthcare. Only in difficult situations or if the diagnosis is unclear, the patients are directed to a neurologist. For some, the condition is mild and does not require pharmacological treatment. For others, however, it can significantly impair their performance and even cause disablement.
Essential tremor is well recognized in Healthcare but its’ treatment is regrettably often inadequate. ”It is only tremor”, the doctor might say. For some, it may be a relief that they do not have Parkinson’s disease. The Healthcare often focuses on providing information on pharmacological treatment, leaving the invisible symptoms and the social aspect of the condition unaddressed. Essential tremor is a more complex condition than currently recognised, and an important part of the treatment is sufficient exercise and physiotherapy as well as occupational therapy when needed.
Medical expertise has been an essential part of the project right from the beginning. Unfortunately, there are few ongoing studies related to this disorder in Finland. We hope, however, that this project will help raising awareness about this disorder and at the same time, increase research activities related to it. Deeper understanding of the disease mechanisms will pave the way for the development of better, more effective, and more individualised treatments. This could improve the quality of life of those living with essential tremor.
Peer Support and Resources
In Finland there is a closed Facebook peer group for people with essential tremor (and the number of members in this group has been growing all the time). As the Essential Tremor Project Coordinator I organise online meetings and face-to-face meetings for those with essential tremor. Many of those who have participated, describe how wonderful it feels to realise that they are not alone, having perhaps for the first time met peers and been able to share experiences. More and more people, including elderly people, have learned new technology in order to meet their peers.
During the project, videos and guidebooks will be produced about the treatment and self-care for essential tremor, and peer meetings and resource weekends will be organised in cooperation with the Finnish Central Association for Mental Health.
Essential Tremor Month in March
March will be essential tremor theme month in Finland, culminating with a webinar in 30th March hosting lectures of a neurologist, an experience person with essential tremor, a therapist, Finnish Biopanks and the Essential Tremor Project representative.
We are very grateful for the National Tremor Foundation for your significant work for the benefit of those with essential tremor, and we do our best to follow your footsteps. We are all working for our mutual goal: improving the quality of life of people with essential tremor.
(Writer and on photo: Marjo Lehtinen)