Your care team
If you are diagnosed with motor neurone disease (MND), you will be introduced to a team of health professionals who will be involved in your care. This type of team is often called a multidisciplinary team because it contains experts from many different health care disciplines. Attending a multidisciplinary clinic can help to anticipate and resolve symptoms of MND,and can improve both survival and quality of life.
Many people with MND draw up an advanced directive. An advanced directive is where you make your treatment preferences known in advance in case you cannot communicate your decisions later because you are too ill.
Issues that can be covered by an advanced directive include:
- whether you want to be treated at home, in a hospice or in a hospital once you reach the final stages of MND,
- what type of painkillers you would be willing to take,
- whether you would be willing to use a feeding tube if you were no longer able to swallow food and liquid,
- whether you are willing to donate any of your organs once you die (the brain and spine of people with MND are particularly important for ongoing research), and
- if you experience respiratory failure (loss of lung function), whether you would be willing to be resuscitated by artificial means, such as having a breathing tube inserted into your neck.
You cannot request anything illegal in your advanced directive, such as assisted suicide. Your care team will be able to provide you with more information and advice about advanced directives.
Riluzole is the only medication that is available to treat MND directly. Riluzole reduces the amount of glutamate in the body, which can slow the progression of MND.
Riluzole can extend the survival rate of people with MND for about three months. It can also delay the need for artificial ventilation.
Side effects of riluzole include:
- rapid heartbeat (tachycardia),
- headaches, and
Very occasionally, riluzole has been known to damage the liver. Therefore, you will need to have regular liver function tests while taking riluzole. If you have a previous history of liver disease, riluzole may not be suitable for you.
There are a range of treatments that can relieve many of the symptoms of MND and improve your quality of life. These are described below.
Muscle cramps can be treated with two different medications:
- phenytoin, and
These medicines were originally designed to treat epilepsy and were called anti-epileptic drugs or AEDs, but they have also proved useful in preventing cramping.
Muscle cramps can also be treated with physiotherapy.
Muscle stiffness (spasticity) can be treated using medication to relax the muscles (muscle relaxants.)
If muscle relaxants are not effective, an injection of botulinum toxin (BTA) may be given. BTA works by blocking the signals from the brain to the affected muscles. The effects of the injection normally last for up to three months.
Another possible treatment for muscle stiffness is intrathecal baclofen therapy. This involves surgically implanting a small pump on the outside of the body, which is connected to the spinal cord. The pump delivers regular doses of a medicine called baclofen into the nervous system.
Baclofen blocks some of the nerve signals that cause muscle stiffness. It can also help control the symptoms of excessive yawning.
The symptoms of excessive drooling can be treated using a number of medications. One widely used medication is called hyoscine hydrobromide. This medication was originally designed to help treat motion sickness but has since proved useful in helping to control symptoms of drooling.
Side effects of hyoscine hydrobromide include:
- dizziness, and
- blurred vision.
If you experience any of the above side effects, you should not drive or operate complex or heavy machinery.
Glycopyrrolate is an alternative medication that can be used to control drooling. It is usually given as an injection. Side effects of glycopyrrolate include:
- difficulty urinating,
- rapid and/or irregular heartbeat, and
- blurred vision.
If your drooling fails to respond to either hyoscine hydrobromide or glycopyrrolate, a medication called atropine can be used.
Atropine works by blocking the normal functions of the saliva glands. It can either be given in tablet form or by injection.
The side effects of atropine include:
- dry mouth,
- dry skin,
- difficulties in passing urine,
- constipation, and
- changes in heartbeat (the heart can beat either slower, or faster, than usual).
Emotional lability (episodes of uncontrollable crying or laughter) can be treated using antidepressants. These can either be the newer type of antidepressant called selective serotonin reuptake inhibitors (SSRIs) or an older antidepressant called amitriptyline.
You may experience some side effects when you start taking SSRIs, including:
- sleep problems, and
These side effects usually improve over time.
Common side effects of amitriptyline include:
- dry mouth,
- problems passing urine,
- a slight blurring of vision, and
These side effects should ease in around seven to 10 days as your body gets used to the medication
Not everyone with MND will experience problems with their speech, but there is a lot of help for people who do experience speech problems. A speech and language therapist (SLT) can teach you a number of techniques to make the most of your speech function by making your voice as clear as possible.
As MND progresses, you may need some sort of assistive technology to help you communicate. A range of communication aids are available and your SLT will be able to advise you about the most effective communication aids for you.
As MND progresses, the symptoms of dysphagia (problems with swallowing) will become so severe that you will no longer be able to eat and drink in the normal way.
One widely used treatment for dysphagia is a feeding tube known as a percutaneous endoscopic gastrostomy (PEG) tube. A PEG tube is surgically implanted into your stomach (abdomen) through a small incision on the surface of the stomach.
PEG tubes are designed for long-term use and last for up to six months before they need replacing.
If you experience pain due to MND, the type of painkiller that will be recommended to help control 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 can be treated using an opiate-based painkiller, such as morphine.
In some cases, a type of medication called gabapentin is used.
Originally, gabapentin was designed to treat epilepsy, but it has also been found to be useful in treating pain. The possible side effects of gabapentin include:
- tiredness, and
- loss of coordination.
If you are prescribed gabapentin, do not suddenly stop taking it as you will experience withdrawal symptoms. These could include anxiety, insomnia, nausea, pain and sweating.
If you wish to stop taking gabapentin, your GP will arrange for your dose to be gradually reduced over the course of a week. By reducing your dosage slowly in this way, you should not experience any withdrawal symptoms.
As MND progresses, respiratory muscle weakness will affect most people with the condition. Respiratory muscle weakness usually develops gradually, but it can also occur suddenly and, on very rare occasions, it may even be the first sign of MND.
It is important to discuss respiratory problems with your GP before they occur. They should be able to refer you to a respiratory specialist, and/or a palliative care specialist as appropriate.
Some people with MND use mechanical ventilation as a way of supporting their breathing. There are several systems that provide ventilatory support, which are known as non-invasive ventilation (NIV). In all cases of mechanical ventilation, air is sucked in, filtered and pumped into the lungs via a facemask or a nasal tube.
NIV may not be suitable for everyone living with MND. Your respiratory specialist, or a palliative care specialist, can discuss all of the options that are available to you.
Deciding what treatment options you want to use in the event of respiratory failure is an important part of drawing up a treatment plan and making an advanced directive (see above). This can obviously be a very difficult and upsetting decision, and you may wish to discuss it with your loved ones.
Your care team will be able to give you information and advice but the final decision will be yours.