What is motor neurone disease and what causes it? Ed Slater diagnosed at 33

·4-min read
Ed Slater has been diagnosed with motor neurone disease at 33. (Getty Images)
Ed Slater has been diagnosed with motor neurone disease at 33. (Getty Images)

Rugby player Ed Slater has been diagnosed with Motor Neurone Disease (MND) at the age of 33.

He has retired from rugby with immediate effect, following the confirmation of his diagnosis in July.

Now, Slater has spoken with the BBC’s Sally Nugent about the symptoms he experienced in the lead-up to his diagnosis, and said: “I didn’t want to face up to the fact that something could be wrong at that point until I started to lose strength in my arm and my hand.”

The rugby player told the BBC: “I’m not saying that makes it easier when you’re diagnosed—it absolutely doesn’t—but in some ways it had been 11 months of torment, different symptoms, not knowing, looking for different reasons, and to have a definitive diagnosis—it sounds strange to say this—but at least it gave me an answer.”

He added: “Not an answer I wanted but I can’t change it. My attitude is to get on with things. There are difficult things in life, not many things harder than that, but you have to face challenges head-on.

“I don’t think too far into the future and I take each day as it comes. I find that’s a peaceful place for me and keeps me in best spirits as I can.”

Motor neurone disease is uncommon and tends to affect older people more. Find out the symptoms and how it is diagnosed below.

What is motor neurone disease?

Motor neurone disease is a condition that affects the brain and nerves, and causes weakness.

There are treatments that can help people with MND, but there is no cure. It can reduce life expectancy significantly and eventually leads to death.

It gradually gets worse over time, and things like moving around, swallowing and breathing become more difficult.

Some people with MND can live for decades with motor neurone disease–for example, Professor Stephen Hawking was diagnosed with MND at the age of 21, but lived to be 76.

What are the symptoms of motor neurone disease?

According to the NHS, symptoms of MND include the following:

  • Weakness in your ankle or leg – you might trip, or find it harder to climb stairs.

  • Slurred speech, which may develop into difficulty swallowing some foods.

  • A weak grip – you might drop things, or find it hard to open jars or do up buttons.

  • Muscle cramps and twitches.

  • Weight loss – your arms or leg muscles may have become thinner over time.

  • Difficulty stopping yourself from crying or laughing in inappropriate situations.

These symptoms can appear gradually and may not be obvious at first. People who experience muscle weakness should see a GP, according to the NHS, as although it is unlikely to be caused by MND, being diagnosed early can help them access the care they need.

Ed Slater said he felt muscle twitches in his arm for 11 months but did not think much about it until it was happening all the time.

He told the BBC: “It was month after month, my arm got weaker and weaker, my grip became weaker and I went to Oxford and was diagnosed with MND.

“Part of me had prepared for that, partly because of the weakness and partly because of the symptoms.”

What causes motor neurone disease?

Motor neurone disease mostly affects people in their 60s and 70s but it can happen at any age.

It is caused by a problem with nerves and cells in the brain, but it is not known why these cells gradually stop working.

MND does not tend to run in families but having a close relative with the disease can sometimes make someone more likely to get it.

How is motor neurone disease diagnosed?

There is no one test for motor neurone disease but doctors may arrange blood tests, scans of the brain and spin, tests to measure the electrical activity in your muscles and nerves, a lumbar puncture (also called a spinal tap) to rule out other conditions.

MND can be difficult to diagnose in the early stages.

How is motor neurone disease treated?

Although there is no cure for motor neurone disease, treatment can help reduce its impact.

Treatment includes occupational therapy, physiotherapy, speech and language therapy, advice from dieticians, medication to slow the progression of the condition and to relieve stiffness, and emotional support.

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