# Banking on My Voice: Life with Motor Neurone Disease

## TL;DR

This paper shares a personal journey with motor neurone disease, emphasizing the importance of voice banking and early support in preserving identity and communication.

## Contribution

The paper introduces the personal experience of voice banking as a restorative practice and advocates for systemic changes in MND care.

## Key findings

- Voice banking is presented as a vital tool for preserving identity and communication in MND.
- Early intervention and access to speech pathology are critical for MND patients.
- The paper identifies systemic gaps in MND care and calls for better integration of research and clinical practice.

## Abstract

This perspective paper presents a first-person account of life with motor neurone disease (MND). Through the lens of lived experience, it explores the complex and often prolonged diagnostic journey, shaped in part by the protective grip of denial. This paper then delves into the emotional impact of MND on the individual and their close relationships, capturing the strain on identity and family dynamics. It also highlights the vital role of the multidisciplinary team in providing support throughout the journey. A central focus of the paper is the personal journey of voice banking. It reflects on the restorative experience of reclaiming a pre-disease voice through tools such as ElevenLabsTM. This narrative underscores the critical importance of early intervention and timely access to voice banking, positioning voice not only as a tool for communication but also as a powerful anchor of identity, dignity, and agency. The paper concludes by highlighting key systemic gaps in MND care. It calls for earlier referral to speech pathology, earlier access to voice banking, access to psychological support from the time of diagnosis, and better integration between research and clinical care.