Motor neurone disease is a rare medical condition which 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 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 have read briefly about motor neurone disease in our detailed guide to the medical conditions which affect older people. Today’s article focuses specifically on motor neurone disease, as we look at the symptoms, causes, and treatments of the condition.
What is Motor Neurone Disease?
The term ‘motor neurone disease’ actually describes a group of diseases which affect nerves (called motor neurones) in the brain and spinal cord. These nerves send vital messages from the brain to the muscles. As motor neurone disease progresses, these messages gradually stop reaching the muscles, leading to stiffness and weakness.
There are different types of motor neurone disease, the most common of which is amyotrophic lateral sclerosis (ALS). 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 neurones – in the brain and spinal cord. But what does this mean?
In essence, motor neurones are the link between the brain and the muscles, controlling all of our muscle movements, such as:
Therefore, the more damaged the motor neurones become, the harder it is for the muscles to carry out these essential movements.
Below are some statistics provided by The Motor Neurone Disease Association. They include information about life expectancy which may be distressing, so read at your own discretion:
- Six people are diagnosed with motor neurone disease in the UK each day.
- Six people in the UK die of motor neurone disease every day.
- A person’s lifetime risk of developing motor neurone disease 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.
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 Scanscan 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 neurones.
- 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, those with motor neurone disease 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 motor neurone disease. It slows down the damage of the motor neurones and can extend life expectancy for 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
Owing 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 make their treatment preferences known 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 a ventilation masks or tracheostomy (permanent breathing tube). If you have been diagnosed with MND, you care team can give you more information about these possibilities.
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. The MND Association 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.
Don’t forget to use discount code BLOG2020 at checkout to get £10 off your Lifeline alarm!
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 which has been “designed or adapted for a disability” qualifies for VAT exemption.
For a person to qualify they must meet certain criteria set by HMRC. These criteria state that the customer must have a long-term illness, a terminal illness or a disability in order to qualify.
Editor’s Note: This article was updated on 1 June 2020 to reflect current information.
Originally published 6 September 2016.