Former England captain Lewis Moody has revealed he has been diagnosed with motor neurone disease (MND).
The 47 year old admitted he is struggling to comprehend what the future will hold for him, and said it was an emotional time being given the diagnosis recently.
He spoke out, saying he is taking one day at a time after being told he has the muscle-wasting condition that killed fellow rugby players Doddie Weir and Rob Burrow.
Moody, who was part of the 2003 Rugby World Cup-winning side and lifted multiple English and European titles with Leicester, was told the news two weeks ago and has now gone public.
Speaking to the BBC he said: “There's something about looking the future in the face and not wanting to really process that at the minute.
"It's not that I don't understand where it's going. We understand that. But there is absolutely a reluctance to look the future in the face for now.”
He spoke with his wife Anne by his side and said together they are putting plans in place for when the time comes that the illness affects his daily life.
He told how he was given the diagnosis after going for tests when he noticed some weakness in his shoulder.
He went for physio but the issue did not resolve and scans from there showed nerves in his brain and spinal cord had been damaged by MND.
He said: "You're given this diagnosis of MND and we're rightly quite emotional about it, but it's so strange because I feel like nothing's wrong.
"I don't feel ill. I don't feel unwell.
"My symptoms are very minor. I have a bit of muscle wasting in the hand and the shoulder.
"I'm still capable of doing anything and everything. And hopefully that will continue for as long as is possible."
Why do so many rugby players seem to have motor neurone disease?
Questions have been raised in the past about whether MND can be linked to rugby.
This difficult question has been posed over the years following the deaths from the incurable disease of high-profile players.
The latest was the former England and Leeds Rhinos rugby league legend Rob Burrow, who died aged 41 in June 2024.
He was diagnosed with the disease in 2019 and campaigned heavily to raise awareness of it with his former team-mate Kevin Sinfield. The latter has raised more than £7 million for MND research through several gruelling challenges.
Research about rugby’s possible link to the condition was done and found there is a link.
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.
Brian Dickie, head of research development at the Motor Neurone Disease Association, said the findings supported earlier data on elevated risk in football players. However, he acknowledged that the study was "considerably smaller" and raised a few questions.
He told the BBC: "For example, it is not clear exactly how many players were diagnosed with MND, though from the information provided, that absolute number will be small.
"It is also surprising that there were no cases reported in the larger control group, as MND is the most common neurodegenerative disease of mid-life.
"Moreover, we know that the vast majority of cases of MND involve a complex mix of genetic and environmental risk factors, so the level of genetic risk may be different in high-performance athletes compared with the general population.”He added that research needed to extend to bigger populations and a “close collaboration between researchers and rugby representative bodies across multiple countries”.
So what is motor neurone disease, which former rugby players have died from it, and what are its symptoms and possible causes?
Here’s all you need to know.
What is motor neurone disease?
Motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS), is a progressive neurodegenerative disorder that affects nerve cells (neurones) responsible for controlling voluntary muscle movements. It primarily affects the motor neurones in the brain and spinal cord, leading to the degeneration and eventual death of these cells.
As motor neurones 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.
In rare cases, some sufferers can live for decades. For example, the renowned English theoretical physicist, cosmologist and author, Professor Stephen Hawking, was diagnosed at age 21 but lived to be 76.
Which famous rugby players have died from motor neurone disease?
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.
Before his death, Weir set up the My Name’5 Doddie Foundation to aid MND research. The charity’s flagship fundraising programme, Doddie Aid, has raised millions of pounds through challenges such as cycling events.
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.
What are the symptoms of motor neurone disease?
The NHS says these 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, the NHS says. Although this is unlikely to be caused by MND, being diagnosed early can help people access the care they need.
Ed Slater said he felt muscle twitches in his arm for 11 months but did not think much about this until it was happening all the time.
“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,” he told the BBC.
“Part of me had prepared for that, partly because of the weakness and partly because of the symptoms.”
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. The interplay between genetic predisposition and environmental factors in the development of MND is an active area of research, but further investigation is required to understand fully the complex causes.
MND mostly affects people in their 60s and 70s but can happen at any age.
How is motor neurone disease treated?
Treatment focuses on symptom management, improving quality of life, and supporting patients and their families.
Here are the key aspects of MND treatment:
- Medications: Certain medications can help manage symptoms and slow down disease progression. They may include drugs such as riluzole and edaravone to slow the disease’s advancement, as well as medications to alleviate pain, muscle cramps, or excessive saliva.
- Assistive devices: As MND progresses, assistive devices including wheelchairs, walking aids, and communication devices may be recommended to enhance mobility and independence.
- Therapy: Physical and occupational therapy can help maintain muscle strength, mobility, and range of motion. Speech therapy assists with communication and swallowing difficulties, providing techniques and assistive devices.
- Respiratory support: Respiratory difficulties are common in MND. Non-invasive ventilation (NIV) or other respiratory support methods may aid breathing and enhance quality of life.
- Palliative care: Palliative care focuses on symptom management, emotional support, and improving overall quality of life. It includes counselling and support services for patients and their caregivers.
