Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease which atrophies and paralyses the body. Life with this illness means being exposed to severe strain and everyday could bring new losses. The mind remains unaffected throughout the course of this irreversible disease and eventually most patients loose their ability to talk.

Aim

The aim of this study was to describe patients’ experiences of daily life with amyotrophic lateral sclerosis.

Method

A qualitative content analysis of four autobiographies was used to describe patients’ own perspective of living with an incurable disease.

Results

The result showed that patients suffering from ALS felt sorrow, regret over previous abilities, reconciliation with their disease and feelings of pleasure. Living with the illness was an emotional roller coaster and the patients could experience both happiness and sadness. They found ways to manage life with ALS and the patients’ could feel well-being despite visible signs of disease.

Conclusion

Although each patient’s experience is unique some thoughts and feelings were similar. This led to four categories illustrating how patients describe daily living. Nurses should have knowledge of how patients’ experience ALS to be able to provide support and optimal nursing care.

Keywords

Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease which atrophies and paralyses the body. Life with this illness means being exposed to severe strain and everyday could bring new losses. The mind remains unaffected throughout the course of this irreversible disease and eventually most patients loose their ability to talk.

Aim

The aim of this study was to describe patients’ experiences of daily life with amyotrophic lateral sclerosis.

Method

A qualitative content analysis of four autobiographies was used to describe patients’ own perspective of living with an incurable disease.

Results

The result showed that patients suffering from ALS felt sorrow, regret over previous abilities, reconciliation with their disease and feelings of pleasure. Living with the illness was an emotional roller coaster and the patients could experience both happiness and sadness. They found ways to manage life with ALS and the patients’ could feel well-being despite visible signs of disease.

Conclusion

Although each patient’s experience is unique some thoughts and feelings were similar. This led to four categories illustrating how patients describe daily living. Nurses should have knowledge of how patients’ experience ALS to be able to provide support and optimal nursing care.