Everything you need to know about living well with motor neurone disease
You may be wondering, what is motor neurone disease? Below, we explore what causes motor neurone disease, what the symptoms of motor neurone disease are, and what treatments for motor neurone disease are available. Remember, you are not alone, and there are many sources of support available to you and your family.
This guide to motor neurone disease inevitably talks about life expectancy, and we would like to make you aware of this before reading. Any medical information provided here is for informational purposes and does not replace medical advice given to you by a medical professional. If you are concerned that you may have any of the motor neurone disease symptoms discussed below, please see your GP.
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.
There are treatments and therapies available to help relieve symptoms, but there is currently no cure for the disease. Motor neurone disease is progressive, and gradually becomes worse over time. Many people will find that the condition affects their day to day life, but there are ways to live well with the condition and have a good quality of life. Some people may require support and care from professional or family carers at some stage of the disease. Motor neurone disease will affect life expectancy, but it is possible to live with the condition for a long time, and there are many stories of people surviving for many years more than was expected when they were initially diagnosed. Everyone experiences the condition differently and will have a different prognosis.
For more information on motor neurone disease, visit the Motor Neurone Disease Association website.
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 given a diagnosis of 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 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’.
Studies have suggested that there may be potential lifestyle and environmental factors that make some people more likely to develop motor neurone disease, including, for example, exposure to very high amounts of chemicals or metals. Some people with a motor neurone disease diagnosis have also experienced severe head trauma in their earlier lives. None of these links have yet been proven, but research into what causes motor neurone disease continues. For more information on risk factors, theories on what causes motor neurone disease, and latest research news, visit the Motor Neurone Disease Association website.
Each person with motor neurone disease will experience their condition differently. The types of motor neurone disease are sometimes difficult to diagnose and differentiate between, because their symptoms do overlap. Some people start with one type and as their condition progresses, they may develop a combination. Each type is distinguished by whether the upper or lower motor neurones are involved and affected by the disease.
The four main types of motor neurone disease are as follows:
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.
Everyone will experience symptoms of motor neurone disease differently. Symptoms usually progress in stages and, at first, it may take some time to discover what is causing symptoms. Diagnosis of motor neurone disease is not always straightforward. The early symptoms of the disease may often be mistaken for other conditions. Symptoms often develop very slowly over a number of years. At some stage, symptoms are likely to affect a person’s daily life, and the impact on life will increase gradually. Everyone’s experience and progression will be different but most people will experience increasing disability.
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
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
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.
A person receiving a diagnosis of motor neurone disease may find this very difficult. They may go through a range of emotions, such as grief, devastation, disbelief, panic, and sadness. It may take some time to come to terms with the diagnosis; some people may find they accept this over time, whereas others may find they need ongoing emotional support. 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 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.
Living with motor neurone disease may present many challenges to daily life, family life and a person’s sense of wellbeing. It is a progressive condition and will affect a person’s life expectancy. Everybody with the condition will experience it differently, with different symptoms and outlooks. Many people live for a long time with a diagnosis of motor neurone disease, before their symptoms progress to a more ‘advanced stage’.
The following information covers some sensitive topics about care and preparing for the final stages of the disease, some of which you may choose to skip if you feel you would prefer to read this at a different time.
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.
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.
Motor neurone disease treatment focusses on managing symptoms. There is currently no cure for the disease, but 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:
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
Some people also find that counselling can help them and their family cope with the challenges of having motor neurone disease. For more information on counselling and how to find a counsellor, visit the NHS website.
Some people choose to explore complementary therapies as motor neurone disease treatments, such as acupuncture, reflexology, massage, reiki, etc. Many people report that these treatments provide relaxation, comfort and reduce negative emotions such as stress and depression, but they will not reverse or slow down the progression of the disease.
At Healthcare Pro, we are experts in daily living aids – these are products and devices that are designed for people living with health conditions or disabilities, to assist them in carrying out daily tasks. This also includes equipment for people who are providing care for someone else.
Here, we suggest some products that may be useful if you or someone you know has motor neurone disease, depending on the symptoms being experienced and how a product can help. This is by no means an exhaustive list, and our website features our full range of disability products and daily living aids.
If you are unsure what products may help you or the person you provide care for, contact our Occupational Therapist product advisors who can advise you on which Healthcare Pro daily living aids for motor neurone disease might help you. Contact them on 0345 121 8111 or email [email protected] You may also wish to contact the Disabled Living Foundation.
PLEASE NOTE: our Expert Advice Service can only give advice 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.
Healthy eating is important for everybody, especially those with long term health conditions, but the actual process of eating independently with motor neurone disease may become difficult.
Motor neurone disease symptoms include muscle weakness. This often occurs around the face and throat, which may cause difficulties chewing and swallowing. A speech and language therapist and dietician can help advise on a motor neurone disease diet.
Weakness may also occur in the hands, which may make eating with standard cutlery, plates and so on more difficult. There are daily living aids available to assist with this, such as large handled cutlery, which is easier to grip.
The Motor Neurone Disease Association provides a leaflet about eating and drinking with MND, including information, tips and easy-swallow recipes.
Taking regular exercise is still possible for someone with motor neurone disease, especially in the earlier stages of the disease. There are many forms of exercise that a person can still enjoy, within their physical limits. Exercise will help you to maintain mobility for as long as possible. A physiotherapist will be able to advise on an exercise regime suitable for you. There are many types of adapted exercise equipment now, such as bicycles that are operated with arms rather than pedalled with legs. The NHS provides fitness advice for wheelchair users, and there are many exercise classes available for people locally who have healthcare conditions.
Many people with motor neurone disease are able to work in the early stages of the condition – some choose to continue working and some choose to change jobs or leave work if they are financially able to. Some people feel they have to leave employment, and some people find their symptoms are too intense for them to continue to work. You may need to explore financial help if you’re disabled. The charity Scope also provides information about many types of financial benefit available to you and your family if you have motor neurone disease.
The Motor Neurone Disease association provides a leaflet for more information on MND and employment.
We hope this guide to motor neurone disease has been helpful to you, whether you have the condition yourself, or know somebody who does. Living with motor neurone disease can be challenging but there are positive ways to do this, using the help and support available to you to make the most of your situation. You may find it useful to talk to other people affected by motor neurone disease and there is a selection of support groups listed below that you may wish to contact, as well as a resources section that points you to other sources of information and advice. If you are concerned about anything you read in this guide, please discuss with your GP.
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
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 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
Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology. Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of motor neurone disease as straightforward as possible.
– 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
– 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
– 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
– nerve cells in the body through which the brain and spinal cord transmit messages to muscles
– a doctor who specialises in disorders affecting the nerves, brain and spinal cord i.e. the nervous system
– these are nerve cells that transmit messages or ‘impulses’ to and from the brain
– part of the body that consists of nerves that transfer messages to and from the brain, all around the body