What is Motor Neurone Disease, how rare is it, what are the symptoms and who is most affected by MND?

Here is everything you need to know about Motor Neurone Disease (MND), including what it affects, how rare it is, the symptoms of the disease and how it develops.

Rugby player from Leicester, Ed Slater, 33, has retired from the sport after being diagnosed with MND.

A statement has been released following his diagnosis, on behalf of the club he played for, Gloucester Rugby, and Ed himself. Included in the statement is a link to a Just Giving page created by the club.

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“Everyone at Gloucester Rugby - players, management and staff - are entirely committed to supporting Ed, his wife, Jo, and his three children in whatever way required,” the statement said.

“We know the same will be true of Gloucester and Leicester fans, and the wider rugby community.

“While Ed, his family and the Club take time to determine next steps, Gloucester Rugby have opened a JustGiving page. The direction of these funds will be determined in due course, whether it be supporting Ed and his family directly and/or a selected MND charity.”

In light of this news, we have answered questions below around MND. Research has been taken from the Motor Neurone Disease Association and NHS websites.

What is Motor Neuron Disease?

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A stethoscope.  (Pic credit: Carl Court / Getty Images)A stethoscope.  (Pic credit: Carl Court / Getty Images)
A stethoscope. (Pic credit: Carl Court / Getty Images)

Messages from the motor neurones, cells in the brain and spinal cord that allow us to move, speak, swallow and breathe, slowly stop reaching the muscles. This results in the muscles becoming weaker, more stiff and waste, affecting your ability to walk, talk, eat, drink and breathe. Some also develop changes in their thinking and behaviour, but everyone is affected differently.

Not all symptoms will affect everyone, or in the same order. Symptoms also progress at varying speeds, which means the course of the disease is harder to predict. The disease is life-shortening and there is no cure. However, symptoms can be managed.

How rare is MND?

MND is not rare, but it is not common as it affects up to 5,000 adults in the UK at any one time.

There is a one in 300 risk of getting MND in a lifetime. Since it is not common, many cases are not seen by general health and social care professionals , so it is crucial to reach out to specialists who have appropriate knowledge in its treatment and care. You can usually be referred to neurological services through your GP.

What are the symptoms of Motor Neurone Disease?

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Each person with MND is affected differently and not everyone with the disease has all the symptoms, or in the same order, and the speed the symptoms progress may differ.

Whilst MND cannot be stopped or reversed, there are therapies, equipment and medication that can help suppress the symptoms. These methods can help someone with MND to live the best possible quality of life.

Below are the symptoms of MND:

- Muscle weakness - loss of muscle mass (wasting), and both movement and mobility problems

- Muscle cramps and spasms - including rippling sensations, also known as fasciculation

- Stiff joints - this limits the level of movement

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- Pain or discomfort - resulting from other symptoms as pain is not always directly caused by MND

- Speech and communication problems - this affects how you talk, gesture and show expression

- Swallowing difficulties - this affects how you eat and drink

- Saliva problems - where thin saliva pools in the mouth or saliva becomes thick and sticky

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- Weakened coughing - this makes it more difficult to clear your throat

- Breathing problems - this can lead to breathlessness and fatigue

- Emotional lability - your emotions become mixed up, for example, laughing when you are feeling sad

- Changes to thinking and behaviour - for about half of those who are diagnosed with MND and this number goes up in the later stages

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Changes to thinking and behaviour are normally mild, but a small number of people with MND may develop frontotemporal dementia, which is more severe and needs additional care and support.

Who is most likely affected by MND?

According to the NHS, MND mostly affects people in their 60s and 70s, but it can affect adults of all ages.

If you have a close relative with motor neurone disease, or a related condition called frontotemporal dementia, this can sometimes mean you are more likely to get it. But it does not run in families in most cases.

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