Finnish Parkinson Association

The Finnish Parkinson Association is a non-profit making central organization for Finnish Parkinson societies and clubs, the Finnish dystonia Association and the Finnish Huntington Association. This national network of clubs and societies (18 societies, 112 clubs in 2010) provides sufferers and their families with a channel for learning about their illness and possibilities for rehabilitation, as well as a chance to think through their life values. Sufferers are able to give each other emotional support and to share experiences of coping with the practical changes in their lives.

Services for sufferers since 1984

Since 1984 The Finnish Parkinson Association has been improving the treatments and rehabilitation of the people living with Parkinson's disease, dystonia, Huntington's disease or similar movement disorders. The mission of the Association is to help the patients to live as rich and fulfilling life as possible.

Being committed to serving the interests of people living with these disorders, the Association provides the decision-makers with information concerning the treatment, rehabilitation and welfare services needed by sufferers. In cooperation with other societies, the Association aims to contribute to the quality and accessibility of the services supporting the patients and their  families.

The services provided by the Association include: adaptation training and rehabilitation, information, counselling and education.

Information on new treatments and rehabilitation programs is provided by different adaptation training courses, guides, www-pages, a newsletter coming out five times a year and in various educational meetings.

Adaptation training and rehabilitation

The Finnish Parkinson Association organizes over fifty different adaptation training and rehabilitation courses in a year for sufferers and their families. Every year the association receives over 1000 applications for the rehabilitation courses; it can offer rehabilitation for about 600 of them. The association has its own facilities for organizing adaptation training and rehabilitation courses; the Rehabilitation Centre Suvituuli in Turku and the Educational Centre Kouluranta in Kangasniemi. Different courses are also organized in co-operation with various regional rehabilitation centres.

Rehabilitation is funded by The Social Insurance Institution of Finland (Kansaneläkelaitos), Finland's Slot Machine Association (Raha-automaattiyhdistys), and the Association for Educational Activities (Opintotoiminnan Keskusliitto). Courses are nearly cost-free for participants.

Rehabilitation courses consist of medical management and adaptation training. The adaptation training covers the guidance and training of the sufferer and his or her family to cope with the new situation in their lives. The courses last for ten days and are residential which encourages mutual support among the participants.

The aim of the courses is to contribute to a sufferer's ability to lead as normal a life as possible, to improve his or her working abilities and to help him or her find new ways to manage the activities of daily living. The sufferer is instructed in self-care methods and in mobility maintenance. In addition, the association organizes special courses focusing on various themes (e.g. depression, communication problems, nutrition), experimental rehabilitation projects and ambulatory services in physiotherapy and occupational therapy.

The rehabilitation team consists of a specialist in neurology, a psychologist, a physiotherapist, an occupational therapist, a speech therapist, a social worker and a nurse.

Administration and staff

The Finnish Parkinson Association's governing body meets biannually at the Association meetings. The National Board, which consists of a chair, a vice chair and eight members, each having a deputy member, is in charge of the Association's basic guidelines. The Executive Director controls and develops the Association's activities according to the decisions made by the Association meeting. The staff of the Association consist of professionals in the fields of welfare and health, economy, communication, and administration.

The Finnish Parkinson Association has local secretaries in six regions. Their duties include supporting the patients and their families as well as the local divisions and clubs by providing counselling and organizing educational services. Local secretaries co-operate with the welfare and health professionals and other neurological societies for the disabled.

Funding of the services and activities

The main financer of The Finnish Parkinson Association's activities is Finland's Slot Machine Association (RAY). Other financers include The Social Insurance Institution of Finland, the State Treasury (for the rehabilitation of the veterans) and local governments. Some of the funding is obtained by the Association's own publishing activities, participation fees and independent fund raising.

National and European Projects

The national projects are funded by the Slot Machine Association in Finland (RAY). Ongoing national projects are:

•Quality of Life in elderly people with Parkinson's Disease
•Developing services for people with dystonia and Huntingtons' Disease
•Rehabilitation model in Parkinson's Disease
National network of recreational clubs and regional divisions

The regional chapters and clubs are based on voluntary work and provide guided exercise, clubs, lectures by specialists and guided recreational services. By participating in the different activities, the sufferers learn new things about life and discover new interesting recreational activities.

Parkinson's disease

Parkinson's disease is an illness affecting the central nervous system and it is due to a reduction in a transmitter known as "dopamine". Symptoms of the disease are tremor, slowness and muscular stiffness.

The cause for this illness is unknown and it cannot be cured. The treatments for the symptoms are medication and rehabilitation. In Finland there are about 10 000 sufferers with Parkinson's disease.

Dystonia

Dystonia is due to abnormal functioning of the brain structures involved with the control of movement. It is characterized by muscle dysfunctions, which force some parts of the body into abnormal postures and twitching movements. It is not known what causes dystonia and there is currently no known cure for it. The treatments for the illness are rehabilitation and botulinum toxin injections in the disturbed muscle. In Finland there are about 1500-2000 sufferers with different kinds of dystonias.

Huntington's disease

Huntington's disease is a progressive hereditary disorder affecting the central nervous system. It affects movement control, memory, judgment and thinking abilities, emotional control and personality. There are no effective treatments for Huntington's disease. In Finland there are approximately 50 people suffering from Huntington's disease, with about 200 people at risk.

Read more about the diseases:

Parkinson's disease in Europe: EPDA, European Parkinson's Disease Association
We Move
Dystonia
Huntingtons disease, International Huntington Association
 

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