Lewis Moody: What to know about motor neurone disease

Former England rugby captain Lewis Moody, on Monday, revealed he has been diagnosed with Motor Neurone Disease (MND).

Sporting Tribune reports that the 47-year-old, who won the 2003 Rugby World Cup with England, said he is not yet ready to face the full implications of the condition that claimed the lives of fellow rugby players Doddie Weir and Rob Burrow.

Moody, who also won several English and European titles with Leicester, disclosed this to the BBC two weeks after receiving the diagnosis.

There has been previous research about rugby’s possible link to the fatal disease.

A 2022 University of Glasgow study found that compared with the general population, a subset of former Scottish international rugby players had a 15-fold increased risk of developing MND.

The group had a roughly two-and-a-half times higher risk of neurodegenerative illness than predicted, according to research findings published in the Journal of Neurology, Neurosurgery, and Psychiatry. However, player position did not affect risk.

What is Motor Neurone Disease?

Motor neurone disease, also known as amyotrophic lateral sclerosis (ALS), is a progressive neurodegenerative disorder that affects nerve cells (neurones) responsible for controlling voluntary muscle movements. It affects nerves in the brain and spinal cord that control muscle movement. As the nerves degenerate, muscles weaken and stiffen, affecting walking, speech, swallowing, and breathing.

The disease is uncommon and mostly affects people over 50, though it can occur in younger adults. About 5,000 people in the UK live with MND at any time, and one in 300 people is estimated to develop it in their lifetime.

As motor neurons deteriorate, the communication between the brain and muscles is disrupted, causing progressive muscle weakness, loss of coordination, and difficulties with speech, swallowing, and breathing.

The disease can vary in its presentation and progression from person to person.

What causes motor neurone disease?

The exact cause of motor neurone disease is not fully understood. However, research suggests that a combination of genetic and environmental factors may play a role in the development of MND.

Genetic factors: In some cases, MND can be inherited due to certain genetic mutations. Approximately 5-10 per cent of MND cases are linked to specific genetic mutations. The most well-known genetic form of MND is familial MND (familial ALS), where the disease runs in families. Several genes have been identified that can contribute to the development of familial MND.

Environmental factors: Various environmental factors have been studied for their potential association with MND, although the evidence is inconclusive. Some factors suggested as potential environmental contributors include exposure to certain toxins, chemicals, heavy metals, and viral infections. However, more research is needed to establish a clear causal relationship.

It is important to note that in the majority of cases, MND occurs sporadically without a clear family history or identifiable cause.

Symptoms of motor neurone disease

Motor neurone disease often develops gradually, and early signs may be easy to miss. According to the NHS, some of the common symptoms include:

Weakness in the ankle or leg — leading to tripping or difficulty climbing stairs.

Slurred speech, which can later progress to trouble swallowing certain foods.

A weak grip — you may drop objects or struggle to open jars or fasten buttons.

Muscle cramps and twitching.

Unexplained weight loss, as arm or leg muscles begin to shrink.

Emotional changes, such as finding it difficult to control laughter or tears.

These symptoms may appear slowly and vary from person to person. The NHS advises anyone experiencing persistent muscle weakness to see a GP. While such symptoms are unlikely to be caused by MND, early diagnosis allows access to proper care and support.

Is there a cure?

There is no cure for motor neurone disease, though research offers some hope.

A new drug, tofersen, has shown promise in slowing or even reversing symptoms for a small group of patients. It has been approved in the European Union but is not yet available in the UK.

Currently, Riluzole is the only approved treatment in the UK. It can slow progression and extend survival by a few months, but it does not repair nerve damage.

Life expectancy after diagnosis varies. Some, like physicist Stephen Hawking, live for decades, but most patients live only a few years as muscle control declines, leading to difficulties with swallowing and breathing.

Why are athletes affected?

Research suggests professional athletes, particularly those in contact sports, may have a higher risk of developing MND.

Studies involving footballers and rugby players found they were more likely to develop the condition, though scientists stress this does not prove a direct cause.

Repeated head injuries and intense physical activity are possible contributing factors.

The MND Association acknowledges a “correlation” between contact sports and MND but cautions that the total number of cases remains small.

Which famous rugby players have died from MND?

Several famous rugby players have died from (or have) motor neurone disease. Scottish rugby union lock Doddie Weir died in 2022, aged 52, after being diagnosed in December 2016.

South Africa scrum-half Joost van der Westhuizen, who won the 1995 World Cup, died in 2017 after he announced he had the disease in 2011. Former Queensland and Australian rugby league player Carl Webb died aged 42 in December 2023 after a four-year battle with the disease.

Former Gloucester lock Ed Slater retired from rugby union in July 2022, aged only 33, after being diagnosed with MND. And now former England captain Lewis Moody has shared he has been diagnosed with the disease.

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