Living With Motor Neurone Disease

A diagnosis of motor neurone disease changes life profoundly, but it does not end it, and how people experience the disease varies enormously. This page looks at what living with MND can involve, and at the support and technology that help people keep as much independence, connection and identity as possible. It is general information offered with care, not medical advice.

Daily life and care

As MND progresses, everyday activities, moving, speaking, eating, breathing, gradually become harder, and most people come to rely on a combination of equipment, adaptations and personal care. The cornerstone is specialist multidisciplinary care: a team that anticipates changing needs and helps manage them, from mobility aids and home adaptations to support with nutrition and breathing. Good care can make a real difference both to comfort and to how long someone lives.

Communication and technology

For many people, one of the hardest losses is the ability to speak, and this is where assistive technology has transformed what is possible. Communication aids range from simple letter boards to sophisticated computer systems controlled by the smallest available movement, or even by eye tracking.

Hawking is the most famous example of all. After losing his voice in 1985, he communicated for the rest of his life through a speech synthesiser, selecting words with a single cheek muscle, and went on to write books and give lectures around the world. His case is exceptional, but it shows vividly how technology can preserve not just communication but a person's work, humour and personality.

The human side, and support

Living with MND is not only a physical matter. It affects emotions, relationships and identity, and it places real demands on the family members and friends who so often become carers. Looking after their wellbeing matters as much as the practical care. Hawking spoke and wrote about refusing to be defined by his condition and about the importance of having things to live and work for, reflections gathered on the page about disability and resilience.

No two journeys with MND are the same, and Hawking's extraordinary longevity was not typical. But support exists at every stage, for people with the disease and for those who care for them.

If you or someone close to you is affected by MND, the MND Association offers information and support, including a helpline and local services. You can find ways to help on the support page.