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Patient Voices: Motor Neurone Disease

Motor Neurone Disease (MND) stories

Motor neurone disease (MND), is a term used to describe a group of degenerative, progressive and incurable conditions that affect the nervous system. The most common of these, Amyotrophic Lateral Sclerosis (ALS) was first described by French physician J.M.Charcot in 1874. All forms of MND damage and destroy motor neurones, the cells that carry messages from the brain to control voluntary movement of the muscles.

Motor neurone disease is relatively rare, yet it has had some high-profile coverage. You may like to look up some of the reporting of the cases of Chris Woodhead, Professor Stephen Hawking and Diane Pretty.

The stories on this page have been created by people with MND and their carers. The stories have been used in learning programmes to illuminate the experiences of people with MND for those engaged in MND research. The materials and supporting information produced for DeNDRON can be found here.

A one-way ticket
Motor Neurone Disease tops Jean’s list of diseases not to have. Diagnostic challenges combine with the absence of treatment or cure. But there is one thing that people with MND can do to help themselves and others…

My journey with David
After a series of falls, David is finally diagnosed with Motor Neurone Disease (MND). As Margaret and David face the end of David’s life, and the end of their journey together, Margaret reflects on the complexities and challenges – as well as the rewards – of caring for David at home.

Why research?
Jean is a medical professional, and also a person with Motor Neurone Disease (MND). Whilst this means she knows the seriousness of her condition, it also means that she understands the crucial importance of patient participation in research to advances in understanding and treatment.

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