TY - JOUR
T1 - You look at life through a different lens
T2 - a phenomenological study of living with amyotrophic lateral sclerosis
AU - Morgan, Katherine Hope
AU - Havranek, Katherine
AU - Horn, Chelsea
AU - Lee, Michelle Lanphere
AU - Thomas, Sandra
PY - 2025/8/25
Y1 - 2025/8/25
N2 - AIMS: Amyotrophic lateral sclerosis (ALS) is a motor neuron disease that progresses without periods of remission; few live more than five years beyond diagnosis. In this study we investigated the lived experiences of people diagnosed with ALS in the United States, in South Central Appalachia.PATIENTS & METHODS: We selected the philosophical and methodological approach of existential phenomenology of Merleau-Ponty to identify what was most important or figural to participants, within the contexts of Body, Other People, World, and Time.RESULTS: Through phenomenological interviews with 10 people living with ALS, six themes and 17 subthemes were identified covering the process of diagnosis, loss and devastation, support from others, assistive devices, a new purpose, and a change in perspective.CONCLUSIONS: These themes offer insight into life with an ALS diagnosis so that this unique patient population may be better understood from a physical, medical, emotional, and spiritual standpoint.
AB - AIMS: Amyotrophic lateral sclerosis (ALS) is a motor neuron disease that progresses without periods of remission; few live more than five years beyond diagnosis. In this study we investigated the lived experiences of people diagnosed with ALS in the United States, in South Central Appalachia.PATIENTS & METHODS: We selected the philosophical and methodological approach of existential phenomenology of Merleau-Ponty to identify what was most important or figural to participants, within the contexts of Body, Other People, World, and Time.RESULTS: Through phenomenological interviews with 10 people living with ALS, six themes and 17 subthemes were identified covering the process of diagnosis, loss and devastation, support from others, assistive devices, a new purpose, and a change in perspective.CONCLUSIONS: These themes offer insight into life with an ALS diagnosis so that this unique patient population may be better understood from a physical, medical, emotional, and spiritual standpoint.
U2 - 10.1080/17582024.2025.2546761
DO - 10.1080/17582024.2025.2546761
M3 - Article
C2 - 40851522
SN - 1758-2024
SP - 1
EP - 11
JO - Neurodegenerative disease management
JF - Neurodegenerative disease management
ER -