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  • 1.
    Holmgren, Camilla
    et al.
    University of Skövde, School of Life Sciences.
    Cleasson, Lisa
    University of Skövde, School of Life Sciences.
    Upplevelser av att leva med amyotrofisk lateral skleros: En självbiografisk studie2011Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
    Abstract [en]

    Background: Amyotrophic lateral sclerosis (ALS) is an incurable neurological disorder that causes nerve cells to die. This leads to muscle atrophy and the diseased becomes progressively paralyzed. The disease is also affecting speech and swallowing. ALS doesn’t affect the intellectual ability but the person is psychologically affected. ALS annually effects 200 people in Sweden and leads to death within three to five years after the diagnosis. Aim: The purpose of this study was to develop understanding of patients by illuminating the ALS-affected people’s experience to live with the illness. Methods: It was a qualitative study aimed at examining autobiographies written by authors diagnosed with ALS. Results: The results showed that the disease gave individuals considerable limitations to everyday life but also opportunities for personal development. It felt painful for patients to gradually lose body functions and therefore become dependent on help from others. The disease created a chaos of emotions and meant to learn a new way of life. They learned to appreciate everyday situations with laughter and closeness while thoughts of death were recurrent. Conclusion: To care for these patients, or patients in similar circumstances, it’s necessary for health care professionals to meet them with understanding, respect, sensitivity and empathy.

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