What is motor neurone disease and what’s the life expectancy?
MOTOR neurone disease (MND) is a rare condition that affects the brain and nerves, according to the NHS.
It causes weakness that gets worse over time, and there is currently no cure for MND.
Up to 5,000 adults in the UK are affected by the condition, with one in 300 at risk during their lifetimes, data from states.
It slowly robs patients of the ability to walk, talk and eat, although every sufferer is different.
Celebrities who have been diagnosed with the condition include English rugby league player Rob Burrow and the former Bradford City footballer Stephen Darby, both of whom had to retire from their sporting careers early.
Many people associate motor neurone disease (MND) with the scientist Stephen Hawking, who lived with the condition for more than 50 years.
There are many form of MND, which is an umbrella term. Some have a life expectancy of just a few months, while other forms of the disease don't affect lifespan.
It is usually diagnosed in people over the age of 50, and men are at more risk than women. But many people outside of this are affected.
What is motor neurone disease?
MND is a rare condition.
The Motor Neurone Disease Association says the prevalence of the disease - the number of people living with it at any given time - is a lot lower than the incidence.
The association says: "As the progression of MND can be rapid, fewer people are living with this disease than you might expect with a one in 300 risk. This means the prevalence is low, with up to 5,000 people living with MND in the UK at any one time."
MND affects specialist nerve cells in the brain and spinal cord, causing the function of motor neurons to break down.
It stops messages from motor neurones reaching muscles. Everyday activities become increasingly difficult or completely impossible.
Over time, the condition progressively worsens as the muscle weakens and can visibly waste.
The majority of those diagnosed with the disease are given a three-year life expectancy starting from when they first notice the symptoms.
However, life expectancy varies depending on the type of MND.
Those with bulbar onset MND or progressive bulbar palsy (PBP) are told they may have between six months and three years left, starting from symptoms onset. But those with progressive muscular atrophy (PMA) may get more than five years.
Kennedy’s disease - which is not a type of MND, but has similar symptoms - does not change average life span.
People can still defy the average life expectancy rate - Stephen Hawking was told he had two years to live, but carried on for another 50 years.
What causes motor neurone disease?
Even though there has been research into the cause of motor neurone disease, it is difficult to identify a particular trigger for the disease.
Some five to ten per cent of all people with MND have the inherited or genetic form of the disease, while genes may still play a small part in other cases.
The NHS says: "Having a close relative with motor neurone disease, or a related condition called frontotemporal dementia, can sometimes mean you're more likely to get it.
"But it does not run in families in most cases."
Whether there is a family history or not, other environmental triggers may still be needed for the disease to begin.
These triggers may be different for each individual.
Some research says that people who do strenuous exercise are more at risk of FND, if they are genetically vulnerable to the disease.
There has long been a connection between exercise and the disease, with many sportsplayers talking about their own battles.
What are the symptoms of motor neurone disease?
While motor neurone disease isn’t usually painful, symptoms can be extremely debilitating.
In many cases, signs of the disease will begin gradually.
Typically, this will occur on one side of the body only, before progressively worsening.
Heartbreakingly, motor neurone disease may leave the diagnosed unable to move or communicate property.
Swallowing and breathing may also become a difficult task.
The NHS outlines initial symptoms to look out for…
- a weakened grip, which can cause difficulty picking up or holding objects
- weakness at the shoulder that makes lifting the arm difficult
- a "foot drop" caused by weak ankle muscles
- dragging of the leg
- slurred speech (dysarthria)
MND affects everyone differently, the MND Association says. Not everyone has all the symptoms, or in the same order, and the speed at which symptoms progress can vary.
People may have:
- muscle weakness
- muscle spasms
- stiff joints
- speech and communication problems
- swallowing difficulties
- breathing problems
Around 35 per cent of people with MND experience mild cognitive change, which can cause issues in executive functions such as planning, decision-making and language.
A further 15 per cent of people with MND show signs of , which results in more pronounced behavioural change.
How is motor neurone disease treated?
Medical research is yet to find a cure for the rare illness, and there are no therapies to reverse or halt progression of the disease,
Despite this, there is some treatment that can help those with motor neurone disease have a better quality of life, as well as helping with their mobility and bodily functions.
For those who struggle with respiration, a breathing mask may be prescribed.
Riluzole is a medication that is used to help people with motor neurone disease, although it doesn’t prevent the condition progressing.
As it stands, this treatment has only shown a very small improvement in patients’ survival.
For more information, visit the
Famous people who have had motor neurone disease
Rob Burrow announced on December 20, 2019 that he has been diagnosed with the rare disease.
The 39-year-old hasn't been on the rugby field since 2017 when he retired from the sport he loves. He was initially given two years to live.
Burrow, who won eight Super League titles and 20 caps for England and Great Britain, said he was feeling "positive" and he was intending to carry on as normal as possible.
He added: "But what I don’t want is pity. I think that’s the scary thing, that people feel sorry for you. I don’t want that, I just want to crack on like normal."
He met former Scotland rugby union player and fellow MND sufferer Doddie Weir, who revealed in 2017 that he had been diagnosed with MND at just 46 years old.
Fernando Ricksen was an ex-Rangers player who was diagnosed in motor neurone disease in 2013 and tragically died after a six-year battle on September 18, 2019.
The Dutch national was a fans' favourite during his six-year spell at Rangers after being signed by Dick Advocaat in 2000.
The star footballer was a passionate campaigner and fundraiser, spending years raising money and awareness for those similarly battling the disease.
His charity has raised over £1m in a bid to help scientists with research.
Speaking to ITV News, when he used eye movements to talk via a computer, Ricksen urged those in sport to do more to help pressure drugs companies to find a cure.
Remarkably, physics genius Stephen Hawking battled motor neurone disease since he was 21-years-old.
The national treasure, who died on March 14, 2018, aged 76, managed to defy all odds, especially given that he was diagnosed with two years to live.
Hawking regularly thanked the NHS for their assistance since his diagnosis.
He said he would “not be here without it” because he’d had a “large amount of high-quality treatment”.
