Att leva med amyotrofisk lateralskleros (ALS)

: Ur ett patientperspektiv

Abstract

Background: ALS stands for amyotrophic lateral sclerosis and is an incurable neurologic disease. The disease is caused by the degeneration of motor neurons that is being replaced by connective tissue, this leads to paralysis through muscle atrophy. Aim: The aim of this study was to evaluate how people with ALS experience their daily life. Method: This study was based on self biographies to get a general impression of their experience of the disease. Result: Patients with ALS were affected by their surroundings, both mentally and physically. They experienced shame and isolation and they tried to hide their disease. They valued their independence and the helping hands from the family and personal assistants. Discussion: One of the main findings in the study was that patients found themselves imprisoned in their own bodies because they gradually lost their physical abilities. Another finding was how important it was been given the right information and how miscommunication could cause a feeling of being displeased and psychologically abused. A final finding