Motor neurone disease and sport are entwined in a complex and complicated relationship

As a rugby player, former England international and World Cup winner Lewis Moody was formidable. “Tough” didn’t begin to describe it.

South Africa prides itself on producing some of the hardest men on the planet when it comes to rugby — Bakkies Botha, Schalk Burger and Bismarck du Plessis are just some of them. Moody was in that category when he played.

Heyneke Meyer, who coached some of the tungsten men in the game at the Bulls and the Springboks, once told this writer that Moody would have graced any Bulls or Boks team just for his sheer physicality. Meyer coached the Englishman at Leicester and saw him up close.

Moody hung up his boots more than a decade ago. This week, at the age of 47, he told the world via the BBC that he had been diagnosed with motor neurone disease (MND).

It’s a devastating diagnosis for Moody, his family and friends. And for the rugby and sporting communities in general. He is still a young man with a young family. His 17-year-old son Dylan is an England U18 goalkeeper and is making his way as a professional at Southampton FC. Ethan is 15. It is tragic.

MND is a collective term for a group of progressive, fatal neurodegenerative disorders characterised by selective destruction of motor neurons.

These specialised nerve cells are responsible for transmitting signals from the brain and spinal cord to voluntary muscles throughout the body, controlling essential functions such as walking, speaking, swallowing and breathing.

There is no cure and life expectancy is anywhere between two and five years, although in rare cases such as that of the brilliant scientist professor Stephen Hawking, sufferers can live for decades.

Cruel doesn’t begin to cover it.

“There’s something about looking the future in the face and not wanting to really process that at the minute,” Moody told the BBC. “It’s not that I don’t understand where it’s going. We understand that. But there is absolutely a reluctance to look at the future in the face for now.

“It (telling his sons) was the hardest thing I've ever had to do. They are two brilliant boys and that was pretty heartbreaking,” Moody said.

Currently, the prognosis is devastating. While the disease relentlessly attacks the motor system, the sensory nerves, cognitive functions and intellect typically remain intact. It’s a condition that effectively imprisons an active, functioning mind inside a failing body.

Prevalence in sport

Tinus Linee, a hard-tackling Western Province and Bok centre in the 1990s also succumbed to the disease. He was diagnosed in April 2013 and died in November 2014.

Former Bok great Joost van der Westhuizen brought the attention of MND to wider consciousness in South Africa because of his fame. He died from complications due to MND in February 2017, a little more than two years after being diagnosed.

More recently Doddie Weir, the great Scotland the British & Irish Lions lock, died as a consequence of MND. But not before he roused the medical community to increase its research efforts through his charity My Name’5 Doddie Foundation. More than £20-million (nearly R500-million) has been raised to fund research into understanding the disease. There is a far more coordinated effort within the medical community to find answers and therefore a cure.

MND first came to the wider public consciousness in the 1930s when legendary New York Yankees baseballer Lou Gehrig was struck down.

Gehrig played a remarkable 2,130 consecutive Major League games as a fine first baseman. But in the 1938 season, Gehrig was unusually clumsy, and his power wilted. After extensive medical tests, he was diagnosed with Amyotrophic Lateral Sclerosis (ALS), another name for MND.

No Cure

Almost 90 years on from Gehrig’s diagnosis, there is still no cure or vaccine. And there is no discernible causal link, or common thread that binds suffers.

MND afflicts about three to five people per 100,000 of the population, according to a study by the University of Bath.  

According to a long field study by the University of Glasgow rugby players have a higher likelihood of developing MND compared with the general population.

The study, which tracked 412 Scottish rugby players who largely played in the amateur era (pre-1995) against a cohort of non-rugby players, concluded that rugby players in the control group were up to 15 times more at risk of suffering MND.

“This study provides further insight into the association between contact sports and neurodegenerative disease risk,” lead researcher Professor Willie Stewart noted.

“Of particular concern are the data on motor neurone disease risk among our rugby players, which is even higher than that for former professional footballers. This finding requires immediate research attention to explore the specific association between rugby and the devastating condition of motor neurone disease.”

Crucially, the study investigated whether risk varied by playing position. However, the analysis found no significant difference in neurodegenerative disease risk between forwards, who are typically involved in more frequent, lower-velocity collisions in scrums and rucks, and backs, who may experience fewer but higher-velocity impacts in open play.

This study was a follow-up to Professor Stewart’s earlier work where he tested 7,676 former male Scottish professional soccer players and compared them to over 23,000 matched controls.

The study found that the former soccer players had a 3.5-fold higher rate of death due to neurodegenerative disease.

There have also been extensive studies in American Football (NFL) such as a 2012 study conducted by the National Institute for Occupational Safety, and in Italian soccer.

Links?

The tendency then, is to link head trauma to MND. But it’s not that simple.

“A lot of people will say to me, surely there is a link?” Sean McGrath, the head of medical affairs for the My Name’5 Doddie Foundation, told The Times.

“The short answer is we don’t know. Personally, I think it is unlikely. There’s definitely a link between trauma to the head and early onset dementia. That is kind of done and dusted. But I don’t think you can apply the same link between head trauma and MND.”

What is emerging is that MND seems to be more prevalent in active people.

The cause of MND remains mysterious, with approximately 90% of cases classified as sporadic, meaning they occur without a clear family history or genetic cause.

The remaining 10% are familial, linked to specific genetic mutations. A confluence of genetic predisposition and environmental or lifestyle factors is believed to trigger the disease process in sporadic cases.

“While studies suggest a correlation between these professional sports and MND they do not demonstrate causation,” the motor neuron disease association noted.

“They recognise that professional footballers and rugby players are more likely to develop MND but they don’t suggest that playing football professionally, or any particular aspect of doing that, directly leads to a person developing MND. 

“It is also important to keep in mind the number of reported MND cases in these studies is still relatively low, and so concluding there is a definite increased risk could be misinterpreted if this is simply a cluster due to random chance.”

The research may not have yet found a cure for MND, but there is a greater understanding of it.

Scientists have identified approximately 30 genes linked to causing MND. However, the reason those cells mutate, including doing strenuous exercise, is unclear at this stage.

“There is no concrete, definitive link between rugby and MND,” said Dr Nick Cole, head of research at MND Association.

“There have been studies that show there is an increased risk in people who play professional sport but they were small studies, so it was a small increase in a small number of people.

“It’s more a case of perception because you have got these high-profile people kindly sharing their stories, but six people will be diagnosed with MND every day.

“So, it is not the rugby per se, it could be a genetic predisposition to developing MND for people who are built to be active and take part in sport.”

The cumulative body of scientific evidence presents a clear and concerning picture. A statistically significant association exists between participation in certain elite sports and an elevated risk of developing and dying from MND.

This risk is most pronounced in high-contact and collision sports.

However, the causal pathways are complex and not yet fully understood. DM