A moving new BBC2 documentary, which airs tonight, reveals the devastating impact Motor Neurone Disease (MND) is having on former Leeds Rhino rugby star Rob Burrow, who was diagnosed with the disease in December 2019.
The rugby legend, a scrum-half who also represented Great Britain, has seen a rapid deterioration in his health – including weight loss and poor speech – in recent months.
The 30-minute programme follows his progress during the pandemic, showing how MND has dramatically affected life with his wife of 20 years, Lyndsey, and their three young children, Macy, nine, Maya, five, and Jackson, two.
The documentary Rob Burrow: My Year With MND, presented by Sally Nugent, sees interviews with his former teammates and his parents, including his father who says he’s questioned ‘Is it our fault he played rugby?’ and his mother, who says she ‘blamed’ the sport after her son’s shock diagnosis.
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Great Britain and Leeds Rhino star Rob Burrow, who appears in the BBC 2 documentary which airs tonight at 7pm discussing his rapid physical decline since he was diagnoised with MND in December 2019
Burrow playing during a testimonial for Leeds Rhinos in January 2020, pictured with his children Macy, far left, Jackson, centre, and Maya, far right, at Emerald Headingley Stadium, Yorkshire
The documentary charts Burrow’s deterioration since his diagnosis including weight loss and poor speech; the former Leeds Rhino hooker says MND ‘can’t sap his spirit’
Burrow’s wife of 20 years and mother to his three young children, Lindsey says she’s now her husband’s carer in the 30-minute documentary
Fans have raised nearly £350,000 to ensure that Rob, Lindsey and their family have security going forward
In the emotional programme, which airs tonight, Burrow, 38, describes how MND has taken over his body, saying: ‘First it comes for your voice, then it takes your legs’.
He adds that while his body is being diminished by the illness, a degenerative condition which affects how nerves in the brain and spinal cord work, it won’t ‘sap his spirit’ and says: ‘My mind is so strong and positive’.
Burrow, who was often the smallest man on the pitch but could outrun much bigger oppoonents during his 17 seasons with Leeds Rhino, was first diagnosed following problems with his speech last year and doctors initially put down his slurring to a viral infection.
At the time, he said: ‘I was expecting to go and get medication and get on with life.’
Burrow believes the first warning sign was there last September, when his former captain Kevin Sinfield approached him at the Rhinos’ end-of-season awards night. ‘I was giving the Academy Player of the Year award and I got up on stage and the word I struggled with was ‘consistency’.
Now needing full-time care, Burrow is seen enjoying a day out in Yorkshire this summer with his two youngest children, Jackson, left, and Maya
‘Kev came up and said, “Are you all right? Have you been drinking?” I said, “No, what are you on about?” I hadn’t even realised at the time that I’d slurred the word.’
It was a similar story two months later when Burrow was moving house. ‘The word I couldn’t say then was ‘solicitor’. That’s when I thought something was up, but I thought it might just be stress or anxiety from moving, or the long-term use of painkillers for my shoulder injury.’
Motor Neurone Disease (ALS): No known cure and half of sufferers live just three years after diagnosis
Treatment
There is no cure for MND and the disease is fatal, however the disease progresses at different speeds in patients.
People with MND are expected to live two to five years after the symptoms first manifest, although 10 per cent of sufferers live at least 10 years.
History
The NHS describes motor neurone disease (MND) as: ‘An uncommon condition that affects the brain and nerves. It causes weakness that gets worse over time.’
The weakness is caused by the deterioration of motor neurons, upper motor neurons that travel from the brain down the spinal cord, and lower motor neurons that spread out to the face, throat and limbs.
It was first discovered in 1865 by a French neurologist, Jean-Martin Charcot, hence why MND is sometimes known as Charcot’s disease.
In the UK, Amyotrophic Lateral Sclerosis (ALS) is referred to as Motor Neurone Disease, while in the US, ALS is referred to as a specific subset of MND, which is defined as a group of neurological disorders.
However, according to Oxford University Hospitals: ‘Nearly 90 per cent of patients with MND have the mixed ALS form of the disease, so that the terms MND and ALS are commonly used to mean the same thing.’
Symptoms
Weakness in the ankle or leg, which may manifest itself with trips or difficulty ascending stairs, and a weakness in the ability to grip things.
Slurred speech is an early symptom and may later worsen to include difficulty swallowing food.
Muscle cramps or twitches are also a symptom, as is weight loss due to leg and arm muscles growing thinner over time.
Diagnosis
MND is difficult to diagnose in its early stages because several conditions may cause similar symptoms. There is also no one test used to ascertain its presence.
However, the disease is usually diagnosed through a process of exclusion, whereby diseases that manifest similar symptoms to ALS are excluded.
Causes
The NHS says that MND is an ‘uncommon condition’ that predominantly affects older people. However, it caveats that it can affect adults of any age.
The NHS says that, as of yet, ‘it is not yet known why’ the disease happens. The ALS Association says that MND occurs throughout the world ‘with no racial, ethnic or socioeconomic boundaries and can affect anyone’.
It says that war veterans are twice as likely to develop ALS and that men are 20 per cent more likely to get it.
Lou Gehrig was one of baseball’s preeminent stars while playing for the Yankees between 1923 and 1939. Known as ‘The Iron Horse,’ he played in 2,130 consecutive games before ALS forced him to retire. The record was broken by Cal Ripken Jr. in 1995
Lou Gehrig’s Disease
As well as being known as ALS and Charcot’s disease, MND is frequently referred to as Lou Gehrig’s disease.
Lou Gehrig was a hugely popular baseball player, who played for the New York Yankees between 1923 and 1939.
He was famous for his strength and was nicknamed ‘The Iron Horse’.
His strength, popularity and fame transcended the sport of baseball and the condition adopted the name of the sportsman.
He died two years after his diagnosis.
He began to do his own research and read about MND. But after the club took him to hospital for testing, the eight-time Super League winner was told by his doctor to ignore his self-diagnosis.
‘The doctor said, “Why are you saying that? We are not testing for that”. They thought I might have something called myasthenia gravis, which can be treated. Then I got my MRI scan back, which was fine, so I thought I was home and dry. I thought it might be something like an infection.’
Burrow retired from playing in 2017 and was just two years into a coaching role when he was diagnosed with the illness
Just before Christmas last year, he and Lindsey gathered their three children – Macy, then eight, Maya, then four, and then one-year-old Jackson – at home to tell them the news. ‘The kids were running around and we had to say, “Sit down, we want to tell you something”.
‘We told them loosely, “Daddy is poorly”. We didn’t name what it was, apart from saying there’s no cure.
‘And Maya just said, “What are you telling us that for? That’s boring”. That was just perfect. I thought telling them would be the hardest thing to do, but when Maya said that, it lightened the mood.’
Fans have raised nearly £350,000 to ensure that Rob, Lindsey and their family have security going forward since the scrum-half revealed he had the illness.
Donations can be made here: www.virginmoneygiving.com/fund/robburrow
Rob Burrow: My Year With MND, airs on BBC2 tonight at 7pm