All the information on motor neurone disease you need to live well with the condition.

Curious about motor neurone disease? Let's delve into its causes, symptoms, and available treatments. Remember, you're not alone on this journey, and there are numerous sources of support ready to assist you and your family.

Before you proceed with this guide on motor neurone disease, it's important to note that life expectancy will be discussed. Please be aware of this aspect while reading. Additionally, all medical information provided here serves only informational purposes and should not substitute any advice given by a medical professional. If you have concerns about experiencing any of the symptoms of motor neurone disease discussed below, it is advisable to seek guidance from your GP.

What is motor neurone disease?

Motor neurone disease is actually a group of conditions that affects the nervous system, specifically the motor neurones. Damage to these nerves begins to affect the function and strength of a person’s muscles throughout the body, causing permanent disability.

Motor neurone disease is also called amyotrophic lateral sclerosis (ALS) in the United States. The disease is quite rare, with around 1 in 500,000 people affected in the UK. Children do not contract motor neurone disease, and it mostly affects people over 50 years of age. Men are a little more likely to have the condition than women.

While there are treatments and therapies available to alleviate symptoms, it's important to note that motor neurone disease currently has no cure. The disease is progressive, gradually worsening over time. As a result, many individuals may find their day-to-day life affected by the condition. However, there are ways to maintain a good quality of life while living with motor neurone disease. Some individuals might require support and care from professional or family caregivers at certain stages of the disease.

Motor neurone disease does impact life expectancy, but individuals can still live with the condition for an extended period. Remarkably, there are numerous stories of people surviving far beyond initial expectations when first diagnosed. It is crucial to understand that each person's experience with the condition varies, leading to different prognoses for each individual.

For more information on motor neurone disease, visit the Motor Neurone Disease Association website.

What causes motor neurone disease?

Motor neurone disease occurs because the ‘motor neurones’ in the brain stop functioning as they should. Neurones are nerve cells, which are responsible for transmitting messages to and from the brain, to make the body work. Motor neurones are nerve cells that specifically transmit messages from the central nervous system to enable us to carry out motor skills involving our muscles. Most of the actions our bodies undertake are controlled by muscle, including everything from breathing to walking.

There are two types of motor neurone, described as ‘upper’ or ‘lower’. This refers to where the neurones are located in the body. Upper motor neurones are located in the brain, and they pass messages to the lower motor neurones, located in the brain stem and spinal cord. Messages are then transmitted out to the muscles.

If a person is  diagnosed with motor neurone disease, it means that this process is not working properly, and the crucial messages from motor neurones are not getting through to the muscles, meaning that muscles do not respond to these signals. Therefore, motor neurone disease causes muscles to become weaker and eventually to deteriorate (this is referred to as muscle wastage). Visit the Motor Neurone Disease Association for more detailed information about what goes wrong in motor neurones.

Experts understand what motor neurone disease is, and the damage it does to the body, but they do not yet understand what causes motor neurone disease to happen to some people and not others.

A small number of people with motor neurone disease also have a family member with the condition, or similar conditions that affect the brain, such as frontotemporal dementia. These people are likely to have a faulty gene that has caused their motor neurone disease. For more information, download the MND Scotland factsheet ‘The Genetics of MND’.

Research studies have indicated that certain lifestyle and environmental factors might increase the likelihood of developing motor neurone disease. These factors include potential exposure to high levels of chemicals or metals. Additionally, some individuals diagnosed with motor neurone disease have a history of severe head trauma in their earlier lives. However, it's important to note that none of these associations have been definitively proven, and investigations into the causes of motor neurone disease are ongoing. For more information on risk factors, theories on what causes motor neurone disease, and latest research news, visit the Motor Neurone Disease Association website.

Did you know?

Motor neurones are special nerve cells in the central nervous system that control our muscles.

Main types of motor neurone disease

Every person diagnosed with motor neurone disease will experience their condition differently. Diagnosing and distinguishing between the different types of motor neurone disease can be challenging, as their symptoms often overlap. Some individuals may initially present with one type, but as the condition advances, they might develop a combination of types. The classification of each type is based on whether the upper or lower motor neurones are affected by the disease. This complexity in presentation highlights the diverse nature of motor neurone disease and the need for personalised approaches to its management.

The four main types of motor neurone disease are as follows:

Amyotrophic lateral sclerosis (ALS)

The most common form, which leads to a variety of symptoms because both upper and lower motor neurones are affected, causing weakness and wastage of muscles, muscle twitching and spasm and difficulties speaking or swallowing.

Progressive bulbar palsy (PBP)

A fairly rare form of the disease, PBP mainly affects the brain’s bulbar region, resulting in symptoms affecting the facial muscles, throat muscles and tongue, causing an inability to swallow, drooping face and speech difficulties.

Primary lateral sclerosis (PLS)

Very rare, this affects upper motor neurones, causing some level of weakness in the limbs, but not wasting of the muscles. This type often has a longer life expectancy than other types.

Progressive muscular atrophy (PMA)

This quite rare type of motor neurone disease progresses a little more slowly than others and mainly affects the lower motor neurones, with symptoms including weight loss, wasting and weakness of the muscles and muscle twitching. Sometimes, people are diagnosed with PMA and then progress on to a different type of the disease, as their symptoms worsen.

Did you know?

Motor neurone disease affects muscles, and can cause difficulty with walking, talking, eating, drinking and breathing.

Symptoms of motor neurone disease

Experiences with symptoms of motor neurone disease are unique for each individual. The symptoms of motor neurone disease can vary significantly from person to person. They typically progress in stages, and initially, it may take time to pinpoint the exact cause of these symptoms. Diagnosing motor neurone disease is not always straightforward, as early symptoms can often be mistaken for other conditions.

The development of symptoms usually occurs gradually over several years. Eventually, the impact on a person's daily life becomes noticeable, and this impact continues to increase over time. While the experience and progression of the disease differ for each individual, most people will face increasing disability as the condition advances.

Here, we cover the symptoms of motor neurone disease, according to each stage of the disease.

In the ‘early stages’ of motor neurone disease, some people find they have one or more of these symptoms:

• Weakened arm or hand muscles, often noticed due to a lack of grip strength
• Weakened lower limbs, such as the ankle, which may result in tripping up
• Weight loss or visible loss of muscle mass
• Difficulties with speaking or swallowing e.g. slurring of words
• Shortness of breath (although this is rare)
• Pain e.g. caused by muscle cramps, joint inflammation, damaged nerves
• Fatigue

If you are concerned that you or someone you know may be exhibiting any of the symptoms above, it is important to see a GP as soon as possible. Motor neurone disease is quite rare, and there are many other conditions that can cause similar early symptoms, but these should be checked out to ensure a correct diagnosis.

As the disease progresses, which may take many years, the ‘advanced’ to ‘end stage’ symptoms may include:

• Muscles become very weak, stiff and may be difficult to move
• Difficulties speaking and swallowing become more pronounced
• Excess saliva and drooling
• Uncontrollable yawning
• Uncontrollable emotions e.g. laughing or crying
• Cognitive difficulties e.g. finding it hard to concentrate
• Increasing breathing difficulties
• Increasing physical disability and paralysis
• Increasing pain

MND Scotland provides a Managing MND Factsheet about the symptoms of MND.

Diagnosis of motor neurone disease

If you or someone you know is concerned about any symptoms they may be experiencing, it is important to visit a GP. If you are presenting with symptoms that may be associated with motor neurone disease, your GP will examine you physically and may ask questions about your lifestyle and how long you have had these symptoms.

Motor neurone disease is quite rare, and many GPs may have never come across the condition before. The Motor Neurone Disease Association provides a helpful guide to support GPs in considering motor neurone disease early on, and when to refer to a neurologist, called ‘Could this be motor neurone disease?’

A neurologist will try to find out if you have motor neurone disease, or another neurological condition, by conducting blood tests, scans, and special tests that measure the electrical impulses transmitted by nerve cells. To find out more about specific tests, visit the NHS website.

Receiving a motor neurone disease diagnosis can be an immensely challenging experience for an individual. A whirlwind of emotions, including grief, devastation, disbelief, panic, and sadness, may surface. Coming to terms with the diagnosis often requires time and personal coping mechanisms. While some individuals gradually accept the reality of the condition, others may require ongoing emotional support to navigate their journey. It is important to find out as much as possible about the condition and the motor neurone disease support available to you and your family.

The Motor Neurone Disease Association provides information on motor neurones disease if you are newly diagnosed. If you are a parent recently diagnosed with motor neurone disease, MND Scotland provides a factsheet Telling Children about MND, which you may find useful.

Read on to find out more about treatments for motor neurone disease that can help relieve symptoms, as well as the challenges and possibilities if you are living with motor neurone disease.

Did you know?

Motor neurone disease is quite rare, and as such it may take some time to diagnose.

Living with motor neurone disease

Living with motor neurone disease brings forth numerous challenges that can impact daily life, family dynamics, and a person's overall well-being. As a progressive condition, it can affect life expectancy. Each individual's experience with the disease is unique, characterised by varying symptoms and outlooks. While some people live for an extended period with the diagnosis before experiencing more advanced stages of the disease, others may face faster progression.

The information that follows covers sensitive topics concerning care and preparations for the final stages of the disease. You may choose to skip this section if you feel more comfortable reading it at a different time.

Impact on daily living

Motor neurone disease is likely to have an impact on all areas of daily living at some stage.

Most people with the condition will find their mobility is impaired, which is likely to get worse over time. This may affect their ability to walk, get around, drive, exercise, and do all those daily tasks that we take for granted, such as using the toilet or having a shower.

If this is the case, there are specialists called Occupational Therapists (OT) who can assess a person’s needs and recommend different ways to approach tasks, or equipment that may help make tasks easier. Speak to your local social services department regarding an OT assessment. There is lots of adaptive equipment available that can help you to live well with a disability.

Many people are able to overcome some of the potential limitations of living with motor neurone disease, and find ways to live well and do the things they love to do. You may find it helps to hear stories of other people who are living with motor neurone disease, such as Lucy Lintott, or personal stories provided by supporters of the Motor Neurone Disease Association.

Marie Curie provides a wealth of information about living with a terminal illness, and has a telephone support helpline that you may wish to contact.

MND Scotland provides a variety of factsheets on lots of topics related to daily life with motor neurone disease, such as travel, finance, receiving care at home, how to manage physical disability, and preparing for end of life.

Caring for someone with motor neurone disease

If you are caring for someone with motor neurone disease, you are likely to feel an impact on your own wellbeing and life as well. For advice and support on being a carer, visit the Carers UK website.

You may also wish to find out what benefits you are entitled to, and the NHS provides Your Guide to Care and Support which may be helpful.

Treatment for motor neurone disease

Motor neurone disease treatment primarily revolves around symptom management, as there is currently no cure for the condition, although research continues in this area.

There is one key drug treatment available called Riluzole, which slows down the progression of the disease and can increase life expectancy by a couple of months. It does not reverse the damage already caused by the disease, it isn’t suitable for everybody and some people choose not to take it.

There are many general medications available that may provide some relief from symptoms such as pain or inflammation, and your neurologist or GP is able to prescribe these to you.

Some people require surgical procedures or special medical equipment to help them eat or breathe independently during the later stages of their disease, such as:

Percutaneous endoscopic gastrostomy (PEG) tube

This procedure inserts a feeding tube into a person’s stomach when they are unable to eat orally, and allows special, nutrient full liquid food to be syringed into the tube.

Non-invasive mechanical ventilation (NIV)

This is a ventilator machine, used when a person is struggling to breathe, either for short periods during the day or night, or all the time.

A motor neurone disease diagnosis usually results in you having a team of health and social care professionals to support you:

• A physiotherapist may assist with muscle, joint and walking difficulties
• A speech and language therapist may assist with swallowing, eating, drinking and speaking difficulties
• An Occupational Therapist may assist with adapting your daily tasks and environment to enable you to carry out activities
• A neurologist will monitor the progression of your disease
• A GP and sometimes a specialist nurse may provide other healthcare support and monitoring.

Counselling can be a valuable resource for individuals and their families in coping with the challenges posed by motor neurone disease. If you are seeking more information on counselling and how to find a counsellor, the NHS website can be a helpful reference.

Additionally, some people opt to explore complementary therapies as part of their motor neurone disease treatment, including practices like acupuncture, reflexology, massage, reiki, and others. While these treatments may not reverse or slow down the disease's progression, many individuals find that they offer relaxation, comfort, and a reduction in negative emotions such as stress and depression. 

If you are unsure on what products may help you, or need any advice, contact us and get expert advice from our team of occupational therapists.

PLEASE NOTE: Our Expert Advice Service can only advise about equipment and products which may help you to live more independently. They cannot give any advice on medications or treatments for symptoms of this condition.

Diet for motor neurone disease

Maintaining a healthy diet is crucial for everyone, particularly for those with long-term health conditions. However, individuals with motor neurone disease may encounter challenges in eating independently due to the symptoms associated with the condition.

Muscle weakness is a common symptom of motor neurone disease, affecting areas like the face and throat, which can lead to difficulties in chewing and swallowing. Seeking guidance from a speech and language therapist and a dietician can be beneficial in designing a suitable motor neurone disease diet.

Additionally, weakness in the hands may make using standard cutlery and plates more challenging. To assist with this, there are daily living aids available, such as large-handled cutlery, which offers a more comfortable grip for individuals with motor neurone disease.

The Motor Neurone Disease Association provides a leaflet about eating and drinking with MND, including information, tips and easy-swallow recipes.

Exercise for motor neurone disease

Regular exercise remains possible for individuals with motor neurone disease, particularly during the earlier stages of the condition. Numerous forms of exercise are accessible, tailored to their physical limitations, allowing them to enjoy physical activity.

Engaging in exercise assists in preserving mobility for as long as possible. Seeking guidance from a physiotherapist is essential, as they can recommend a suitable exercise regimen based on individual needs and capabilities. Nowadays, a wide variety of adapted exercise equipment is available, such as arm-operated bicycles, providing more options for individuals with motor neurone disease to stay active and maintain their overall well-being. The NHS provides fitness advice for wheelchair users, and there are many exercise classes available for people locally who have healthcare conditions.

Motor neurone disease and employment

During the early stages of motor neurone disease, many individuals are capable of continuing their work. Some opt to stay in their current jobs, while others choose to change roles or leave work if financially feasible. However, some individuals may feel compelled to leave employment due to the impact of their symptoms, which can be intense and challenging to manage while working. 

If you find yourself disabled due to motor neurone disease, it may be necessary to explore financial assistance options. The charity Scope offers valuable information on various types of financial benefits available to individuals and their families dealing with motor neurone disease. 

The Motor Neurone Disease Association provides a leaflet for more information on motor neurone disease and employment.

Did you know?

There are medications available to help relieve symptoms and a drug called Riluzole that can help slow the progression of the disease by a couple of months.

Support

We sincerely hope that this guide on motor neurone disease has been beneficial to you, whether you are personally affected by the condition or know someone who is. Living with motor neurone disease can be challenging, but there are positive approaches to embrace, utilising the available help and support to make the most of the situation. Engaging with other individuals affected by motor neurone disease through support groups can be valuable in sharing experiences and finding additional encouragement. In the resources section below, you will find a compilation of support groups and other sources of information and advice that you may find helpful.

If you have any concerns or questions regarding the content of this guide, we recommend discussing them with your GP. They can provide personalized guidance and address any specific concerns you may have about motor neurone disease. Remember, you don't have to face this journey alone, and there are resources available to support you every step of the way.

Communities

Motor Neurone Disease Association Forum – provided by the UK’s leading MND charity, this forum connects people affected by the disease, to discuss all aspects of life and health

ALS forums – a US-based site open to people across the world to discuss their experiences of motor neurone disease

Resources

Brain & Spine Foundation – a source of information about a variety of neurological conditions, including MND, as well as a nurse-led advice helpline

Marie Curie – a UK charity that provides support for people living with a terminal illness and their families, including nursing support with information on care and end of life care, plus practical matters such as benefits, finances etc.

Motor Neurone Disease Association (MNDA) – the leading UK charity for educating and researching MND, which provides information for people with the condition as well as healthcare professionals, local support services and includes a helpline

MND Scotland – a Scottish charity that provides information about living with MND as well as funding for research projects

NHS Choices – a source of official medical information about causes, symptoms and treatments for MND, as well as a range of other conditions

Scope – a UK charity providing information related to disability, as well as an online community and helpline

Did you know?

Motor neurone disease will affect mobility and life expectancy but people can still live a good quality of life with the condition.

While our aim is to present our information on motor neurone disease in a clear and simple manner, there are instances where using accurate medical terminology becomes necessary. Medical terms can be known for their tricky pronunciation, and if you're not well-versed in the subject, they may be a bit difficult to understand.

To facilitate your understanding of motor neurone disease, we've compiled a list of terms used on this page, accompanied by brief explanations to ensure clarity. Our intention is to make the information as straightforward as possible, allowing you to grasp the concepts more easily.

Glossary

Brain stem

The part of the brain that connects to the spinal cord and controls the messages which are essential for basic actions of the body e.g. breathing, heart rate, consciousness.

Bulbar region

The part of the brain that includes the brain stem, cerebellum and pons, which are all responsible for bodily functions that are crucial to keeping us alive.

Central nervous system

The brain and spinal cord which work together to transmit messages around the body to control all the body’s actions.

Frontotemporal dementia

A medical condition which causes dementia symptoms due to damage in the frontal and temporal lobes of the brain, which are responsible for behaviour, language, memory and judgement.

Motor neurones

Nerve cells in the body through which the brain and spinal cord transmit messages to muscles

Neurologist

A doctor who specialises in disorders affecting the nerves, brain and spinal cord i.e. the nervous system.

Neurones

These are nerve cells that transmit messages or ‘impulses’ to and from the brain.

Spinal cord

Part of the body that consists of nerves that transfer messages to and from the brain, all around the body.

Contact Us

We hope this guide has served you well, providing as much information on motor neurone disease as you need. However, if there is anything else you would like to know, you can head to our useful help and advice section for more guidance.

If you’d like to speak to a member of our team to discuss our living aids, don’t hesitate to contact us.