Both patients and relatives talked about decreased socialisation. Patients avoided having lunch or dinner with other people because of problems eating without spills or mess. They felt embarrassed if others were looking at them. Going to the theatre and concerts was not possible because they did not know how the medical condition might be that day, and if they would be too tired. ‘We have cut down a lot. We have not been to the theatre because I am not sure that I can make that particular day if I am not alert enough.’ Additionally, they were not seeing other family members or friends to the same extent as earlier.