There's no cure for motor neurone disease, but treatment can help relieve symptoms and help to slow down the condition's progression.
Your care team
If you're diagnosed with motor neurone disease, you'll be introduced to a team of healthcare professionals who'll be involved in your care. This team is often called a multidisciplinary team and typically includes a neurologist (or palliative care physician) and a specialist nurse.
An important principle of medical care is that patients feel in charge of what is, and what isn't, done to them. Many people with motor neurone disease draw up an advance decision (sometimes called an advanced directive). 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
- the type of medication you'd be willing to take in certain circumstances
- whether you'd be willing to consider a feeding tube if you were no longer able to swallow food and liquid
- if you have respiratory failure (loss of lung function) in the latter stages of motor neurone disease, whether you wish to be resuscitated by artificial means, such as having a permanent breathing tube inserted into your throat (known as a tracheostomy)
- whether you'd be willing to donate any of your organs after you die (the brain and spinal cord of people with motor neurone disease are very important for ongoing research)
Your care team will be able to provide you with more information and advice about making an advance decision.
Read more about end of life care
Riluzole is the only medication that's shown 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, although this varied from person to person and the condition continued to progress even with riluzole treatment.
Side effects of riluzole are usually mild and commonly include nausea, tiredness and, less commonly, a rapid heartbeat.
Very rarely, riluzole has been known to cause liver damage. If you're prescribed riluzole you'll need to have blood tests for the first few months to check your liver is working properly. If you've had significant liver disease, riluzole may not be suitable for you.
A range of treatments can relieve many of the symptoms of motor neurone disease and improve your quality of life.
Muscle cramps can be helped by physiotherapy and, in some cases, a medication called quinine. They typically improve later in the condition.
Quinine can cause side effects, such as:
- hearing and vision problems
- tinnitus – the perception of noise in one ear, both ears or inside the head
- vertigo – a sensation that you, or the environment around you, is moving
Because of this, quinine will usually only be used if the potential benefits are thought to outweigh the risks.
Muscle stiffness, also known as spasticity, can be treated using medication such as baclofen to help relax the muscles. Side effects may include increased weakness or tiredness.
Drooling of watery saliva 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 drying up the flow of saliva.
Amitriptyline, atropine eye drops applied to the tongue, glycopyrrolate, or botulinum toxin injections are alternative medicines that can also be used to control drooling.
Not everyone with motor neurone disease will have significant 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 assistive technology to help you communicate. A range of communication aids is available. Your therapist will be able to advise you about the most effective communication aids for you.
Not everyone with motor neurone disease will have significant swallowing problems (dysphagia). For those that do, it can prevent normal eating and drinking. If food goes down the wrong way into the lungs it can cause chest infections (called aspiration). Weight loss due to poor nutrition can also accelerate motor neurone disease.
One widely used treatment for dysphagia is a thin feeding tube known as a percutaneous endoscopic gastrostomy (PEG) tube. The tube is surgically implanted into your stomach through a small cut on the surface of the stomach. It shouldn't restrict your daily activities and you can continue to bathe and swim normally if you wish. It's advisable to have the tube inserted before the breathing muscles are significantly weakened, even if it isn't used for feeding until sometime later.
Motor neurone disease isn't usually a painful condition. If you experience pain, it's often aching joints caused by muscle weakness or a change in posture. The type of painkiller recommended will depend on how severe the 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. It was originally designed to treat epilepsy but it's also useful for treating pain. Drowsiness is a typical side effect of gabapentin.
As motor neurone disease progresses, the muscles that help you breathe will become weaker and your breathing will become increasingly shallow, with a weaker cough.
Breathing difficulties usually develop gradually, although 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 or neurologist should be able to refer you to a respiratory specialist or a palliative care specialist, as appropriate.
Many people with motor neurone disease benefit from non-invasive mechanical ventilation (NIV) to support their breathing, usually overnight when asleep. Room air (not oxygen) is sucked into a small box, filtered and then gently pumped into the lungs through a face mask or nasal tube each time the person takes a breath.
NIV may not be suitable for everyone with motor neurone disease. Your respiratory or palliative care specialist will be able to 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 also give you information and advice but the final decision will be yours.
Some people with motor neurone disease find complementary therapy helpful. This involves combining conventional treatments with non-medical treatments, such as acupuncture.
Complementary therapies can't slow the progression of motor neurone disease, but they 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.
Advice for carers
Caring for someone with motor neurone disease can be both physically and emotionally demanding, and it's likely you'll need a wide range of support.
For information and advice about all aspects of caring, visit Care Information Scotland