Motor neurone disease

Also called MND, ALS, Amyotrophic lateral sclerosis

Nerves controlling movement die, while the mind usually remains. Roughly a third of people die within a year of diagnosis.

What it is

MND kills the motor neurones, the nerve cells that carry instructions from the brain to the muscles. The muscles waste and weaken. Sensation, and in most cases thinking, remain intact.

Around 5,000 people in the UK have it at any time. About a third die within a year of diagnosis and more than half within two, though a minority live much longer.

There is no cure. There is a great deal that changes how the time is spent, and almost all of it depends on getting equipment and decisions in place before they are needed rather than after.

Signs you might notice

Weakness starting in one place: a foot that drops, a hand that cannot grip, a slurred word.

Muscle twitching and cramps. Visible wasting.

Slurred speech and difficulty swallowing, which is bulbar onset and progresses faster.

Breathlessness lying flat, and morning headaches, which mean the breathing muscles are affected.

Emotional lability: laughing or crying that does not match the feeling. And in some people, changes in behaviour and language related to frontotemporal dementia.

How it can affect day-to-day life

The speed is what makes MND different from every other progressive condition here. Equipment ordered on a normal social care timescale arrives after it is needed, and that is not a minor administrative failure. It is weeks of somebody's remaining life spent without a wheelchair or a communication aid.

Voice banking has to happen early, while speech is still clear. Almost nobody is told this in time.

Breathing support, usually non-invasive ventilation, improves both survival and quality of life, and it needs to be discussed before a crisis.

Supporting someone well

Anticipate, never react. Order equipment on the basis of where the person will be in three months, not where they are now.

Bank the voice as soon as possible after diagnosis. A recorded voice used in a communication device months later matters enormously to families.

Get communication support in early. Fiducia Talk is free, works with switch scanning for people who lose hand function, and can be in use before any assessment completes.

Discuss ventilation, feeding tubes and advance decisions early and calmly. An advance decision to refuse treatment is legally binding, and making it while communication is easy is a kindness to everyone.

Manage saliva, cramps and emotional lability actively. All three are treatable and all three are often just endured.

Fiducia Guardian holds the plan, the equipment, the medicines and the team, which in MND changes almost monthly.

Where to get help

Ask for referral to a specialist MND care centre and an MND nurse. The multidisciplinary clinic model improves survival.

The MND Association run a helpline on 0808 802 6262 and can fund equipment quickly when statutory routes are too slow.

Apply for benefits under special rules for end of life, which fast-tracks them.