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Motor Neurone Disease: A Useful Guide

• Written by Katie

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Motor neurone disease (MND) is a rare medical condition that progressively damages parts of your nervous system. According to the NHS, motor neurone disease affects two in every 100,000 people in the UK each year, with 5000 people living with the condition at any one time.

Although MND can affect people of all ages, it is most common in older adults and slightly more common in men than women. Most people with the condition first develop their symptoms when they are in their 60s.

You may have briefly read about motor neurone disease in our detailed guide to the medical conditions which affect older people. This article focuses specifically on motor neurone disease, as we look at the symptoms, causes, and treatments of the condition.

What is Motor Neurone Disease?

Motor neurone disease affects nerves (called motor neurons) in the brain and spinal cord. These nerves send vital messages from the brain to the muscles. As MND progresses, these messages gradually stop reaching the muscles, leading to stiffness and weakness.

You may hear several different medical names and terms for this condition. The Motor Neurone Disease Association explains:

MND and ALS are different descriptions of the same disease. In the UK we use the term motor neurone disease (MND) and in the USA they use amyotrophic lateral sclerosis (ALS). There are several forms of MND. ALS is the most common type. MND is an umbrella term for all forms of the disease. In the USA, ALS is used as the umbrella term.

As has been noted, motor neurone disease damages the nerves - or motor neurons - in the brain and spinal cord. But what does this mean?

What are Motor Neurons?

In essence, motor neurons are the link between the brain and the muscles, controlling all of our muscle movements, such as:

  • Walking
  • Speaking
  • Gripping
  • Swallowing
  • Breathing

Therefore, the more damaged the motor neurons become, the harder it is for the muscles to carry out these essential movements.

MND Statistics

Below are some statistics provided by The Motor Neurone Disease Association. They include information about life expectancy which may be distressing, so please read at your own discretion:

  • Six people are diagnosed with MND in the UK each day.
  • Six people in the UK die of MND every day.
  • A person's lifetime risk of developing MND is around 1 in 300 - that's one person in an average size cinema screening.
  • MND does not usually affect your senses, such as sight, sound and feeling.

The average life expectancy of those affected by this condition ranges from two to five years from the onset of their symptoms. However, 10% of those diagnosed will live for longer than five years and a few will live with MND for decades.

Symptoms of Motor Neurone Disease

Because MND is a progressive condition, the symptoms usually appear gradually. For this reason, it may be difficult to identify or even notice them at first. Symptoms will vary from person to person, usually affecting one side of the body, to begin with. They can include:

  • Tripping or falling over more frequently than usual.
  • Slurring or difficulty speaking.
  • Weakening grip, usually beginning in one hand.
    • You may struggle to open jars or fasten buttons, for example.
  • Muscle cramps and/or twitches.

For a comprehensive list of symptoms, see the NHS website.

It is important to note that no two cases of MND are alike. Different people may experience different symptoms or the same symptoms in a different order.

How is Motor Neurone Disease Diagnosed?

Besides checking for these symptoms, there are several tests doctors can use to diagnose MND. The following tests can supplement a regular physical examination to diagnose motor neurone disease.

  • Blood tests can look for a substance called creatine kinase, which is an indicator of muscle breakdown.
  • MRI Scans can help doctors to rule out other conditions like Alzheimer's, stroke, and multiple sclerosis.
  • Nerve conduction tests measure how quickly your nerves can conduct an electrical signal.
  • Lumbar puncture - Used to take a sample of spinal fluid for testing.
  • Electromyography can detect when muscles start to lose their nerve supply

Causes of Motor Neurone Disease

Research into the causes of MND is underway. Although scientists do not yet know for sure what causes motor neurone disease, popular theories include:

  • Harmful exposure to certain toxins.
  • Premature ageing of the motor neurons.
  • Genetics - 10% of MND cases are hereditary.

Treatment for Motor Neurone Disease

Sadly, motor neurone disease is a life-shortening condition and there is currently no cure. Instead, treatment aims to improve quality of life and reduce the impact of symptoms for those affected.

In the UK, people with MND will be treated by a team of specialists, usually including a neurologist and a specialist nurse in addition to their usual GP.

At this time, Riluzole is the only medication that can combat the progression of MND. It slows down the damage of the motor neurons and can extend life expectancy by two to three months on average.

Other common treatments include:

  • Physiotherapy to maintain muscle strength and mobility
  • Speech therapy to aid communication
  • Baclofen- a medication used to treat muscle stiffness
  • Emotional support for those with MND and their loved ones

Advance Decision

Due to the degenerative nature of motor neurone disease, most people are advised to draw up an 'advance decision' once they are diagnosed. This allows those with MND to indicate their treatment preferences in advance, in case they are unable to communicate in the future. Items covered include:

  • Where you would like to receive treatment as you reach the final stages of the condition: at home, in a hospice, or in a hospital.
  • The types of medication you would be willing to take in certain circumstances.
  • Whether you would consider a feeding tube if you're unable to swallow food and liquid in the future.
  • If you become unable to breathe independently, whether you wish to be resuscitated by artificial means, such as having a permanent breathing tube inserted into your throat.
  • Whether you want to donate your organs to aid research after you die.

As motor neurone disease progresses, some sufferers may need feeding tubes or breathing support in the form of ventilation masks or tracheostomy (permanent breathing tube). If you have been diagnosed with MND, your care team can give you more information about these possibilities.

Motor Neurone Disease - Information

Credit to MND Association

Living with Motor Neurone Disease

A diagnosis of motor neurone disease is undeniably life-changing. Therefore, it will inevitably take time for you and your loved ones to process the news. The MND Association recommends trying not to make any instant decisions about your treatment until you have all the information you need. Their website has lots of resources for those with MND and those caring for loved ones with MND. These resources include a guide to living with motor neurone disease and ways to find support in your local area.

After your diagnosis, roles and routines within your family life may change, as your partner or child becomes your carer at home. It's important to seek support from health officials in order to reduce stress and strain on your relationships.

How We Can Help

If you or someone you know has been diagnosed with motor neurone disease, it might be a good time to consider a Lifeline personal alarm system. Our 24/7 service helps many disabled and elderly people across the country to stay safe and independent in their homes. If one of our alarm users feels unwell or suffers a fall, they can press their pendant button and our Emergency Response Team will arrange help immediately.

To find out more, see our detailed guide to the personal alarm service or call 0800 999 0400 today. Alternatively, fill in our Contact Us form and we will get in touch with you as soon as we can.

VAT Exemption

If you have motor neurone disease, then you qualify for VAT Exemption when you order a personal alarm system from Lifeline24. HMRC states that a product that has been “designed or adapted for a disability” qualifies for VAT exemption.

For further information about other common medical conditions, please see our in-depth guide. 

 

 

Editor's Note: This article was updated on 11th April 2022 to reflect current information.

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