Background: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease in which nerve cells in the brain, brain stem and spinal cord dies. This leads to muscle atrophy and paralysis, with strong impact on patients' physical and mental life.

Aim: Highlight how patients with ALS experience living with the disease.

Method: This is a literature-based study using qualitative scientific articles.

Results: The results show that ALS involves a lot of changes in a patient's life and a central feeling that the study found was loss. Loss of control was the most difficult. ALS led also to feelings of fear. Fear of the future and death troubled them each day. At the same time it was important to try to find a meaning of life and feel in control of their life situation.

Conclusion: This study has provided increased understanding of how patients with ALS experience living with the disease. The experiences are characterized by fear of death, anxiety about losing control over their own bodies and hopelessness of not be able to influence their progression of the disease. Thoughts about death is a central part and those feelings that control the life of the patient and create anxiety. Even though ALS is perceived as a horrible and dark disease, many patient's tried to be positive and make the best of their everyday life. Results show that patient's experience health despite their illness. Nurses can promote patient's health by having increased understanding of ALS and by providing information and being present.