Patients with amyotrophic lateral sclerosis (ALS) experience an astonishingly high quality of life. The disease leads to progressive muscular weakness and the clinical course is always fatal. In spite of the continuously increasing loss of control, two recent studies from Germany showed many ALS patients are satisfied with their lives. The authors showed that the quality of life of ALS patients does not depend on the severity of their physical restrictions. In fact, it was found that patients who have to be given artificial respiration are more satisfied than patients for whom this is not necessary. Although an outside observer would have expected ALS patients to be depressed given the severity of the disease, this was only the case for 10% of patients. This means that the proportion of depressive disorders in the ALS patients is only slightly greater than in the overall population.

WHAT THE STUDY MAY MEAN TO YOU AS A HEALTH PROFESSIONAL: The authors believe believe it essential that there be a scientific investigation of the quality of life, as seen by the patient with ALS. The present studies show that the quality of life of patients with a fatal degenerative disease does not necessarily have to differ from that of healthy subjects.

WHAT THE STUDY MAY MEAN TO YOU AS A PATIENT: In an accompanying editorial, the significance of these studies was discussed within the context of shortening life for ALS patients. These cannot be justified by saying that the patient has to be freed from his suffering. This view reflects that the suffering is seen by the observer and not felt by the patient. As a patient with any chronic illness, this is a thought that you should always bear in mind. If there are ways you can reduce the suffering you feel--such as through your use of self-management skills--only you can see the results they offer to you.