​As Coronation Street’s Paul Foreman is diagnosed with motor neurone disease: What is MND?

In a first for the long-running ITV soap, a recent episode saw the builder referred to a specialist following weeks of speculation about what is causing his clumsiness, before being given a diagnosis of MND.

“Motor Neurone Disease (MND) is a rare condition, affecting around 5,000 people in the UK,” explains Dr Pablo Garcia Reitboeck, consultant neurologist at London Bridge Hospital, part of HCA Healthcare UK.

“Unfortunately, there is no cure for MND, but a lot can be done to improve a person’s quality of life and to manage symptoms.”

There around 100 people living with MND in NI currently.

The MND Association has just provided £130,000 of funding to the MND Care Centre based in Belfast which provides and co-ordinates support to patients. This money will cover additional posts to develop this service.

MND association director of external affairs Chris James said: “ Imagine having a terminal illness and then having to explain what it is over and over again. We are working hard to change that and the kind of awareness that will come from this storyline will help enormously.

"Six million viewers will see a character living through an MND diagnosis and then progressing through the disease on screen. That’s six million people who will have a better understanding of what MND is, the impact on the person and, just as importantly, on those around them.

“The team at Coronation Street approached us last Autumn and we have been working with them ever since to ensure that their storyline and scripts are realistic and accurate. They are taking their responsibility to the MND community very seriously and we are very proud to be engaged in supporting that.”

Here, doctors talk through the symptoms, treatments and prognosis for MND.

What is motor neurone disease?

“This is the name that encompasses a group of conditions that characteristically affect the motor cells in the nervous system,” says Dr Khalid Ibrahim, senior attending physician at Sidra Medicine, part of Qatar Foundation.

Garcia Reitboeck explains: “MND occurs when specialist nerve cells in the brain and spinal cord, called motor neurones, stop working and die prematurely. This is called neurodegeneration.”

This includes diseases such as amyotrophic lateral sclerosis (ALS), progressive bulbar palsy, progressive muscular atrophy, and Kennedy’s disease.

Researchers are still unclear on the exact causes, Garcia Reitboeck continues: “Most people have sporadic MND, which is likely caused by a combination of multiple genetic and environmental factors. A minority of patients – less than 10% – have a single gene defect which causes MND which can be passed on through generations.”

What are some of the signs or symptoms of MND?

Garcia Reitboeck says: “Early symptoms can include weakness in your legs – this can cause you to trip or struggle to climb stairs; slurred speech and swallowing problems; muscle cramps and twitches, and progressive weight loss.”

Arm weakness can impair movement: “You might start to notice you’re dropping things or finding it hard to do daily tasks, such as doing up your buttons.”

Breathing problems can cause shortness of breath on exertion or when lying down.

“Sometimes MND can cause cognitive problems and personality change,” Garcia Reitboeck adds.

“MND can change your ability to control your emotions, so you may have difficulty stopping yourself from crying or laughing in inappropriate situations.”

What is the typical prognosis for MND?

While there’s no cure for MND, the progression of the condition varies between patients.

“The manner in which the disorders present depends on which set of motor cells are affected, the upper motor neurons or the lower motor neurons,” Ibrahim says.

“The progression of the weakness and the effect on other body functions can lead to severe disability and can result in early death in some affected children.”

For adults, around 75% of those diagnosed with MND will die within two to three years of initial diagnosis.

“But 10% can survive more than 10 years after being diagnosed,” Garcia Reitboeck says.

Stephen Hawking, for example, was diagnosed in his early 20s and lived with the condition until his death in 2018, aged 76.

What treatments are available?

Because there isn’t currently a cure, MND treatment focuses on managing the symptoms.

“Multi-disciplinary care can improve quality of life and survival as symptoms are pro-actively managed,” Garcia Reitboeck says. This may include “occupational therapy, physiotherapy, speech and language therapy, dietician, palliative care, input from respiratory physician and neurologist.”

Pain relief and medications to relieve muscle stiffness may be required, while Riluzole is currently the only drug licensed for MND treatment in the UK.

*The MND Association also has volunteers in Northern Ireland who can provide one to one support to people with MND and their families, and lots of information on our website, provide grants and there are local branch groups which offer support too.

www.mndassociation.org

https://www.mndassociation.org/support-and-information/local-support/branches/northern-ireland-branch/

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