Ageing with neuromuscular disease: getting lost in transitions

Purpose:To explore the lived experiences of people ageing with neuromuscular disease (NMD).
Introduction:NMD refers to several chronic types of hereditary and progressive NMDs. Owing to advan-ces in rehabilitation and treatment, life expectancy has increased for some subtypes, resulting in life con-tinuing into adulthood and even old age; however, knowledge of people’s lived experiences with NMDis sparse.
Methods:A qualitative study using a phenomenological-hermeneutic approach inspired by Ricoeur wasconducted. Fifteen persons with NMD were interviewed in 2018. The Consolidated Criteria for ReportingQualitative Research (COREQ) checklist was used.
Results:Four themes were identified:“A time-framed paradox of striving for independent dependencyarises as age increases”,“Ageing means entering no man’s land”,“Exercising is caught between shrinkingsurplus of physical energy and demands of everyday life”and“Ending work life is a jumble of relief, con-cern and altered self-perception”.
Conclusion:The pathway to old age with NMD encompasses several transitions, all potentially includingthe risk of getting lost. Physical changes, changes in legislation, experiences of uncertainty regardingwhere one socially belongs and how to balance reduced physical strength in everyday life are indicatedas key areas that affect ageing life with NMD.