Society of Patients with Cerebrovascular Stroke of Slovenia

Prof. Anton Grad, MD, neurologist

In 1994 a sociologic survey on the quality of life of the inhabitants of Slovenia, a independent country since 1991 with a population of 2 million, an 'ex-Yugoslav republic', situated within the triangle of Vienna – Venice – Pannonian Plain. The authors of the study invited cardiologists and neurologists to include their patients after either heart attack or brain stroke in order to compare the quality of life of these two groups of patients with healthy subjects. The results have confirmed a generally accepted opinion of a very poor quality of life in stroke patients. To me personally, this part of the results was expected also. It was a uniform opinion among medical students and young doctors I have had the privilege to teach neurologic skills that »it's better to die of a heart attack or cancer than to survive bedridden, aphasic and completely dependent, respectively«.

On the other hand the results of the above mentioned survey showed that the quality of life in patients after myocardial infarction was better than the one of the healthy subjects! Patients after myocardial infarction had higher self-esteem, they were more physical fit, they visited more cultural events, read more books, and above all, they were socially more active. In brief, they had more »joie de vivre« than healthy subjects! Asking ourselves for the cause of this surprising results we have found out that patients after myocardial infarction were self-organized for aerobic training. However, their meetings were far from the aerobics only. Their social gathering made their lives better.

Therefore, a group of enthusiastic patients after stroke, lead by Mr. Peter Kunc, organized the first so-called »Club of patient with cerebrovascular stroke« in 1996. Beginning with 20 members the membership increased to over 1.500 patients in 18 regionally organized groups (»club«) under an umbrella organization »Society of Patients with Cerebrovascular Stroke«. The society is a non-government organization with the primary objective to resolve the medical and social problems of their members. It is registered as a humanitarian organization at the Ministry of Health of the Republic of Slovenia. The society is a member of the Stroke Alliance for Europe also.

In everyday's activities the »Society of Patients with Cerebrovascular Stroke« plays an important role as an active partner to the professional health-givers. It is particularly active in organizing the complex rehabilitation after stroke. The »Society of Patients with Cerebrovascular Stroke« is an active promoter of the Helsingborg Declaration I and II. Several booklets and papers on the stroke, complications after stroke, stroke rehabilitation have been published. However, the most popular remains the monthly published journal »KAP-nik« (Word-play: in slovene language kap = stroke; but with an ending –nik > kapnik = stalactite, in german Tropfstein, a symbol of long survival in tough conditions of the underground caves of the Karst). On regional level the groups of patients organize educational workshops for patients and their relatives, social events, cultural and rehabilitation activities. They cope with problems of individuals such as a transportation etc.

In conclusion, as a neurologist having a contact with stroke patients on the every-day basis, I cannot imagine a complex treatment of the stroke patients without the activities performed by the »Society of Patients with Cerebrovascular Stroke«.