Motor neurone disease - Treating motor neurone disease

There is no cure for motor neurone disease, but treatment can help relieve symptoms and slow the progression of the disease.

Your care team

If you're diagnosed with motor neurone disease, you'll be introduced to a team of health professionals who will be involved in your care. This team is often called a multidisciplinary team because it contains experts from many different healthcare disciplines.

Advance decision

Many people with motor neurone disease draw up an advance decision. This is where you make your treatment preferences known in advance in case you can't communicate your decisions later because you're too ill.

Issues that can be covered by an advance decision include:

• whether you want to be treated at home, in a hospice or in a hospital once you reach the final stages of motor neurone disease
• what type of medications you'd be willing to take in certain circumstances
• whether you would be willing to consider a feeding tube if you were no longer able to swallow food and liquid
• whether you're willing to donate any of your organs once you die (the brain and spine of people with motor neurone disease are particularly important for ongoing research)
• if you have respiratory failure (loss of lung function) in the late stages of motor neurone disease, whether you wish to be resuscitated by artificial means, such as having a breathing tube inserted into your throat

Your care team can provide more advice about making an advance decision.

Read more about end of life issues and end of life care.

Riluzole

Riluzole is the only medication that has demonstrated a survival benefit for people with motor neurone disease. Riluzole is thought to slow down the progressive damage to the motor neurone cells by reducing their sensitivity to the nerve transmitter glutamate.

In medical research, riluzole extended survival by two to three months on average, though this varied from person to person and the disease continued to progress even with riluzole treatment.

Side effects of riluzole are usually mild and commonly include nausea, tiredness and a rapid heartbeat.

Very rarely, riluzole has been known to damage the liver. People prescribed riluzole therefore need to have monthly blood tests for the first few months to check their liver is working properly. If you have had liver disease, riluzole may not be suitable for you.

Treating symptoms

A range of treatments can relieve many of the symptoms of motor neurone disease and improve your quality of life.

Muscle cramps

Muscle cramps can be treated with a medication called quinine or with physiotherapy.

However, there are some uncertainties surrounding the use of quinine for muscle cramps. This is because there is a risk of side effects such as:

• hearing problems
• tinnitus – the perception of noise in one ear, both ears or the head
• vertigo – a sensation that you, or the environment around you, is moving
• vision problems

Therefore, quinine will usually only be used if the potential benefits are thought to outweigh the risks.

Muscle stiffness

Muscle stiffness, also known as spasticity, can be treated using medication such as  to relax the muscles. Side effects may include increased weakness or tiredness.

Drooling

Drooling can be treated with a number of medications. One widely used medication is a hyoscine hydrobromide skin patch. It was originally designed to treat motion sickness, but has since proved useful in controlling symptoms of drooling.

Side effects of hyoscine hydrobromide are uncommon, but can include:

• drowsiness
• dizziness
• blurred vision

If you have any of these side effects, do not drive or operate complex or heavy machinery.

Amitriptyline, glycopyrrolate, atropine eye drops or botulinum toxin injections are alternative medicines that can also be used to control drooling.

Communication difficulties

Not everyone with motor neurone disease will have speech problems, but there's a lot of help for people who do. A speech and language therapist can teach you several techniques to make your voice as clear as possible.

As motor neurone disease progresses, you may need some sort of assistive technology to communicate. A range of communication aids is available. Your therapist can advise you about the most effective communication aids for you.

Swallowing difficulties

As motor neurone disease progresses, swallowing problems (dysphagia) may become so severe that you won't be able to eat and drink normally.

One widely used treatment for dysphagia is a thin feeding tube known as a percutaneous endoscopic gastrostomy (PEG) tube. A PEG tube is surgically implanted into your stomach through a small cut on the surface of the stomach. The feeding tube doesn't usually restrict your daily activities and you can continue to bathe and swim normally if you wish.

Pain relief

If you have pain caused by the condition (usually joint pain caused my muscle weakness), the type of painkiller recommended to control the symptoms will depend on how severe your pain is.

Mild to moderate pain can often be controlled using non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen. More severe pain is very rare, but it can be treated using an opiate-based painkiller such as morphine.

In some cases, a type of medication called gabapentin is used. Gabapentin was originally designed to treat epilepsy, but it's also useful for treating pain. Typical side effects of gabapentin include drowsiness.

Breathing difficulties

As motor neurone disease progresses, the muscles that help breathing will become weaker and breathing will become increasingly shallow, with a weaker cough.

Breathing difficulties usually develop gradually, but very rarely they may be the first sign of motor neurone disease.

It's important to discuss breathing problems with your GP before they occur. Your GP should be able to refer you to a respiratory specialist or a palliative care specialist, as appropriate.

Some people with motor neurone disease use mechanical ventilation to support their breathing. Several systems provide ventilation support. These are known as non-invasive ventilation (NIV). In all cases of mechanical ventilation, air is sucked in, filtered and pumped into the lungs through a face mask or a nasal tube.

NIV may not be suitable for everyone with motor neurone disease. Your respiratory or palliative care specialist can discuss the options available to you.

Deciding what treatment you want to use in the event of respiratory failure is an important part of drawing up a treatment plan and making an advance decision. This can be a very difficult and upsetting decision, and you may want to discuss it with your loved ones.

Your care team can give you information and advice, but the final decision will be yours.

Complementary therapies

Some people with motor neurone disease find complementary therapy helpful. This involves combining conventional treatments with non-medical treatments, such as acupuncture.

Complementary therapies do not slow down the progression of motor neurone disease, but may help reduce stress and make your daily life more comfortable.

Before considering complementary therapy, you should seek advice from your treatment team and ensure that any practitioners you contact are appropriately registered, qualified and experienced.

Read more about complementary and alternative medicine.