Getting to know the signs of motor neurone disease

Recently a reader wrote to me about assisted dying, a subject close to his heart because he has motor neurone disease.

I’ll tackle the vexed question of assisted dying another time, but now, at his request, I want to write about MND as it’s such a devastating and heartbreaking condition.

Motor neurone disease is uncommon and mainly affects people in their 60s and 70s but can occur at any age. It’s caused by a problem in brain cells and nerves called motor neurones which gradually stop working, although we don’t know why, leading to progressive weakness.

There’s no cure for MND but some people live with the condition for many years and there are treatments to help reduce its impact on a person’s daily life.

But MND can significantly shorten life expectancy and, unfortunately, eventually leads to death.

Symptoms of motor neurone disease emerge gradually. Initially, you might find it harder to climb stairs. Slurred speech may develop and escalate into difficulty swallowing some foods. You might start to drop things, or find it hard to open jars or do up buttons because your grip weakens. Your arm or leg muscles may become thinner over time causing weight loss and muscle cramps and twitches. And you may have difficulty stopping yourself from crying or laughing in inappropriate situations.

Always report muscle weakness to your GP who may refer you for genetic counselling to talk about your risks and the tests you can have done.

There’s no single test for MND but blood tests, a scan of your brain and spine, tests to measure the electrical activity in your muscles and nerves, and a lumbar puncture can corroborate the diagnosis.

Usually, once diagnosed, you’ll be cared for by a team of specialists and your GP. Physiotherapy and exercises will maintain strength and reduce stiffness and you can get advice from a speech therapist and a dietitian. A medicine called riluzole that can slightly slow the progression of MND and muscle relaxants will also help.

Moving around, swallowing and breathing will become increasingly difficult, and a feeding tube and ventilation may be needed.