Distress, Not Symptoms: Reframing Psychological Difficulties in Neurodegenerative Diseases of the Motor System

Simpson, Jane and Zarotti, Nicolò (2026) Distress, Not Symptoms: Reframing Psychological Difficulties in Neurodegenerative Diseases of the Motor System. Cortex. ISSN 0010-9452 (In Press)

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Abstract

Psychological distress is common among people living with neurodegenerative diseases of the motor system (NDMS) such as Parkinson’s disease, motor neurone disease/amyotrophic lateral sclerosis, and Huntington’s disease. Yet the way psychological difficulties are conceptualised in these populations is heavily shaped by medicalised language. Terms such as ‘non-motor symptoms’ and ‘neuropsychiatric manifestations’ were originally introduced to draw attention to difficulties beyond movement changes but they now risk positioning mood, anxiety, apathy and related experiences solely as direct manifestations of neurological degeneration. This framing can obscure the rich psychosocial contexts in which distress arises, blur distinctions between emotional responses and disease processes, and reinforce deficit-based and disease-focused understandings that privilege biological explanations over person-centred ones. It may also influence clinical communication, treatment decisions, help-seeking behaviour, and access to psychological therapy and psychosocial interventions, contributing to inequities in care. This article argues that linguistic choices are not neutral: they construct the boundaries of what counts as legitimate knowledge, shape expectations about causality, and delimit the interventions considered appropriate. Without critical attention to these assumptions, individuals may experience distress as biologically inevitable and clinicians may overlook psychosocial contributors that are amenable to change. We propose that greater awareness of the power of language, coupled with empirical investigation into its effects, is essential for developing a linguistic reformulation of psychological distress in NDMS and more holistic, contextually grounded approaches to supporting psychological wellbeing.