Motor Neurone Disease (MND) | Symptoms and treatments

What is motor neurone disease?

Motor neurone disease (MND) is a rare, progressive neurological condition that damages the brain and nervous system.

MND is incurable and can substantially shorten life expectancy, but there are treatments which help the person to manage the symptoms and have the best quality of life possible.

MND affects the motor neurones in the brain and spinal cord, which leads to muscle weakness, stiffness and waste.

How people are affected by the disease is individual and not all symptoms will affect everyone, which can progress at varying speeds. This page provides information about motor neurone disease and its symptoms, causes and treatments.  
Motor neurone disease, also known as amyotrophic lateral sclerosis (ALS), causes people to become increasingly disabled as messages from the motor neurone cells in the central nervous system gradually stop reaching the muscles, causing them to weaken. Some may also experience changes to their thinking and behaviour.

Motor neurones control muscle activity such as gripping, walking, speaking, swallowing and breathing. Over time, a person diagnosed with MND will find it increasingly difficult to perform some or all of these tasks, and eventually they may become impossible.

What causes motor neurone disease?

The cause of MND is largely unknown, but around 5 per cent of cases can be linked to family history of MND or frontotemporal dementia. In this case, the disease is known as familial motor neurone disease where faulty genes have been found to majorly contribute to the development of the condition.

Around half of those affected by MND has a life expectancy of three years from the start of symptoms, while some may live for up 10 years. In rare cases, people may live longer.

Up to 5,000 adults in the UK are affected by MND at any given time. The risk of developing MND across a lifetime is one in 300 but is more likely in people over the age of 50, and mainly affects people in their 60s and 70s.

Diagnosis of MND

Diagnosing motor neurone disease can be difficult as there is no single test for it. Additionally, there are several other conditions that result in similar symptoms.

The diagnosis is mainly based on the opinion of a neurologist who has the experience to rule out other conditions. Special tests are sometimes needed to do this, such as blood tests, a scan of the person’s brain and spine, measuring electrical activity in muscles and nerves and a lumbar puncture where fluid is removed from the spine and tested.

Symptoms in the early stages

As MND is a progressive disease, the symptoms will get worse over time. Normally, people experience the symptoms in one side of the body first.

In general, motor neurone disease is not a painful condition in itself but can be uncomfortable due to muscle stiffness. People affected may experience pain due to reduced mobility.

There are several symptoms and not everyone will experience all of them, or in the same order. The speed of progression can also vary.

Early symptoms of MND include:

• A weak grip, resulting in difficulty to pick up or hold objects
• Difficulty to lift the arm
• Weakness in ankle or leg
• Dragging the leg
• Muscle cramps and twitches 
• Stiff joints
• Slurred speech
• Saliva becomes thick and sticky
• Inappropriate emotional responses, for example laughing when feeling sad

Symptoms in the late and final stages

Over time, the symptoms will increasingly worsen and become more debilitating.

Late-stage symptoms of motor neurone disease include:

• Inability to move
• Severe difficulty breathing
• Severe difficulty swallowing
• Severe difficulty communicating

During the later stages of the disease, the person affected may need a feeding tube or help to breathe through a face mask. Sadly, the symptoms are irreversible and eventually leads to death. 

Some people will also develop frontotemporal dementia, which causes brain cells in the frontal or temporal lobes to die and the brain cannot function normally. It can affect personality and behaviours, and a person with frontotemporal dementia may lose their ability to speak.

How is motor neurone disease treated?

Although there is no cure for motor neurone disease, there are various treatments available which aim to reduce the impact the condition has on the person’s life and slow down the progression.

People with MND are cared for by a team of specialists and their GP. The team of healthcare professionals is called a multidisciplinary team and usually includes a neurologist or palliative care physician and a specialist nurse.

The community healthcare team may also be involved in your care.

The purpose of the treatments is to make the person feel as comfortable as possible and have a good quality of life, and compensate for the loss of bodily functions.

Treatments for MND include:

• Physiotherapy to maintain strength and reduce stiffness
• Advice from a speech and language therapist
• Advice from a dietitian
• Medicines to relieve muscle stiffness and saliva problems
• Emotional support
• Specialised clinics which help with everyday tasks¨
• Occupational therapy
• Respiratory specialists

The medicine known as Riluzole is the only drug licensed for the treatment of MND in the UK. It has been found to have an impact on survival for people affected by the condition which slightly slows down the progression of MND.

Riluzole is believed to reduce glutamate activity, a chemical messenger in the central nervous system that can cause nerve damage if produced in excess.

If you think you display early symptoms of MND, you should visit your GP as early as possible to receive a correct diagnosis and the support you need.

If you are diagnosed with MND, it is a good idea to start thinking about the future and how you wish to be cared for. Read our guide to Advance Care Planning for more information.

Motor neurone disease in care homes

Nearly 1,600 care homes in the UK can accommodate people diagnosed with motor neurone disease. Use carehome.co.uk’s search function to find a care home near you.

MND is a complex condition and treating it requires a flexible approach to care. Care homes specialised in caring for people with MND have nurses and care workers who are trained to provide support for the symptoms associated with the condition and work closely with other healthcare professionals, such as occupational therapists and neurologists.

If you or a loved one has MND, you can arrange a Needs Assessment with your local authority. The local authority will be able to give recommendations on residential and nursing homes and may contribute to the costs.

You may be able to receive nursing care for free through the following schemes:

• NHS-funded nursing care (FNC)
• NHS continuing healthcare