Hello, my name is Dr Katie Sidle. I’m a Consultant Neurologist and Co-director of the MND Care and Research Centre at the National Hospital for Neurology and Neurosurgery.

Understanding MND

Motor neurone disease, known as MND and sometimes called ALS, is a progressive and ultimately fatal disease that results in degeneration of the motor neurones, or nerves, in the brain and spinal cord. This film is designed to improve your understanding of MND. We’re going to introduce you to four people with MND and explore the impact it has on their lives.

Sarah: Hello, my name is Sarah and I was diagnosed with motor neurone disease at the age of 34. At the time I was a full-time mum caring for my three-year-old daughter.

David: I thought that I’d cracked old age, but I was wrong. With this illness, everything comes to a gradual end — but I did try to continue with activities as much as the illness would allow.

Jan: When people ask how I am, I always say I’m really well — apart from, you know, the inconvenience of having motor neurone disease.

Vicky: Living with MND is just hard. Very hard.

MND attacks the nerves that control movement, leading to progressive muscle weakness and wasting that can leave people unable to move. Weakness of the bulbar muscles — those of the tongue, mouth and throat — can make it difficult to talk and swallow, and eventually muscle weakness can affect breathing.

Some people will experience changes in thinking and behaviour. MND is always terminal. Currently, there is only one medication — Riluzole — that may be suitable for some people with MND. In some cases, Riluzole can provide a modest increase in survival time. It is available in tablet form and also as a liquid, which may be more suitable for people with swallowing problems.

MND can progress very quickly: a third of people die within a year of diagnosis, and more than half die within two years. However, for every person, MND is different — symptoms, progression, and survival rates all vary.

Vicky: The doctor explained to us what the future of this disease looks like. Basically, he said it might be two years, five years — it could be more — and that’s even worse because I’m going to lose him so soon.

While there is no cure for MND, symptoms can be managed to improve quality of life. As a health or social care professional, the knowledge and skills you have can make a positive difference to the quality of life of people with MND.

Charles: Jan went into hospital on one occasion and was eventually moved into a separate room. The problem she had was that they put the call button about two inches away from her hand, so she couldn’t reach it to call for help. This caused incredible distress. She managed to phone me, and I contacted the warden to sort it out. Those little things make a big difference to someone who can’t move very much — and sometimes can’t talk.

Jan: Even if they know something about MND, every single one of us is different. So if I say to a doctor, “I’ve got motor neurone disease,” that doesn’t tell them anything about what I can or can’t do.