Motor neurone disease (MND)

Symptoms of motor neurone disease (MND)

Adults of any age can get motor neurone disease (MND), but it usually affects people over the age of 50.

Symptoms you may have at first include:

• stiff or weak hands – you may have problems holding or gripping things
• weak legs and feet – you may find climbing stairs difficult, you may trip over a lot and you may find it hard to lift or move your foot (foot drop)
• twitches, spasms or muscle cramps (where muscles painfully tighten)

As MND gets worse, you may:

• have problems breathing, swallowing and speaking
• produce a lot of saliva (drool)
• have changes in your mood and personality
• be unable to walk or move

The symptoms affect everyone differently. You may not get all the symptoms and how quickly they get worse can vary from person to person.

How motor neurone disease (MND) is diagnosed

If a GP thinks you might have motor neurone disease (MND), they may refer you to a brain and nerve specialist (neurologist) for an assessment and some tests.

Tests used to help diagnose MND include:

• blood tests
• tests to check how well your nerves are working
• an MRI scan to help rule out other conditions that affect the brain and nerves

MND can be difficult to diagnose in the early stages. But as the symptoms get worse it can usually be confirmed.

Types of motor neurone disease (MND)

There are 4 main types of motor neurone disease (MND).

Each type affects different parts of the body, particularly during the early stages of the condition. Amyotrophic lateral sclerosis (ALS) is the most common type of MND.

How motor neurone disease (MND) affects your life

Motor neurone disease (MND) gets worse over several months or years and is usually life-shortening. How quickly this happens varies from one person to another.

MND can affect a person's life in many ways including:

• mobility and movement
• speech and communication
• breathing, swallowing, eating and drinking
• emotions, feelings, thoughts and behaviour
• relationships and family

You will need ongoing care and support from a wide range of specialists, such as physiotherapists, occupational therapists and speech and language therapists, to help you with these problems.

As MND gets worse, you will have difficulty moving and you may need a wheelchair. You may also need a machine called a ventilator to help you breathe and assistive technology to help with speech.

How long you can expect to live depends on your symptoms and the type of MND you have. Your care team will be able to speak to you about life expectancy if you want to know more.

Treatment for motor neurone disease (MND)

There's currently no cure for motor neurone disease (MND). But there are treatments that can ease your symptoms and help you have the best quality of life possible.

The type of treatment you'll be offered will depend on your symptoms and the type of MND you have. You'll probably need different treatments over time.

A team of healthcare professionals will give you the support you need. The team may include a specialist nurse, a brain and nerve specialist (neurologist), a physiotherapist and an occupational therapist.

Medicines for MND

Treatments you may have include:

• medicines to help ease symptoms, such as muscle stiffness or cramps, drooling and breathlessness
• a medicine called riluzole if you have amyotrophic lateral sclerosis (ALS), which can help slow down its progression

Treatment and support for symptoms of MND

You'll also be offered treatment and support for the symptoms of MND. Every person's needs will be different depending on their symptoms.

Support you might need may include:

• physiotherapy and exercises to help with muscle weakness and stiffness
• dietary advice to help you maintain weight – you may also need equipment and aids to help you when eating and drinking
• mobility equipment, such as walking frames and wheelchairs, and home adaptations, such as handrails and stair lifts
• help with personal care, such as washing, bathing and dressing
• help communicating – a speech and language therapist can teach you useful techniques to help with talking and advise about suitable communication aids
• talking therapy, such as cognitive behavioural therapy (CBT), to help you cope with emotions and feelings, such as anxiety and depression

You should have an appointment with your care team every 2 or 3 months to discuss any changes to your symptoms and needs, and to check how treatment is going.

Causes of motor neurone disease (MND)

Motor neurone disease (MND) affects nerves in your brain and spinal cord called motor neurones. Motor neurones tell your muscles what to do.

If you have MND, your motor neurones stop working properly.

It's not clear why this happens, but for most people it's thought that a combination of certain genes and other factors are involved.

About 1 in 10 people with MND have a family history of the condition. But if someone in your family has MND it does not necessarily mean you will also get it.

Help and support for motor neurone disease (MND)

Motor neurone disease (MND) can be a difficult condition to live with, both physically and emotionally.

As well as support from your doctor, you may find it helpful to get support from other people with the condition, either at a local support group or online.

Motor Neurone Disease Association (MNDA)

Information and support for anyone affected by MND, including family, friends and carers.

• Website: www.mndassociation.org
• Helpline: 0808 802 6262
• MNDA: online forum

Brain and Spine Foundation

Information and support for anyone affected by conditions affecting the brain and nerves, including MND.

• Website: www.brainandspine.org.uk
• Helpline: 0808 808 1000
• Brain and Spine Foundation: join a support group