The progression of MND is unpredictable, and varies significantly from person to person. Being informed about the disease will enable you to plan your life as best as you can. Although there is no cure for MND yet, research has shown there are some things you can do to live better for longer with MND. How you manage your earlier MND symptoms may affect how symptoms you later develop can be managed. Early discussion about symptom management will help you to plan ahead.
Much of the information in this section comes from MND Australia's evidence-based fact sheets, which explore interventions that research has shown to help people live better for longer with MND. We hope you will find it useful. Please contact your Support Team Member for further advice and guidance.
Multidisciplinary care helps you live better, and may help you to live longer, with MND.
Research has shown that health professionals can give you better care and advice when they are knowledgeable about MND and have a coordinated, multidisciplinary approach to your care.
People living with MND are likely to need advice about mobility, communication, breathing, nutrition, managing other symptoms and getting community support. Multidisciplinary care occurs when health professionals, from different disciplines, work together to address as many of these needs as possible.
A multidisciplinary care team for people with MND usually includes a GP, allied health professionals (such as a dietitian, occupational therapist, physiotherapist, and speech-language therapist) and local palliative and community workers.
Multidisciplinary care provides you with a direct link to one contact person, who is usually your MND New Zealand Support Team Member. (In some DHB areas you may also be assigned a nurse coordinator.) Your Support Team Member can advise you about regular review of symptoms and coordinate multidisciplinary care from your team of health professionals. They will help you get information, support and referral to the right services when your needs change, so that any difficulties can be dealt with promptly.
The above information comes from MND Australia's evidence-based fact sheets. See the relevant Fact Sheets below:
Read our 2018 Research Update: Multidisciplinary Clinics for more in-depth information about current research into the life-extending importance of multidisciplinary clinics in providing best practice care for people with MND.
Update August 2020
A recent review suggests that riluzole treatment may extend survival by 6-19 months, which is far longer than that reported in the original clinical trials and points to benefits for both early intervention and prolonged treatment with riluzole. Please read the review here.
Please read the following statement from Sanofi regarding the supply of Rilutek in New Zealand:
Rilutek tablets continue to be available, stock is being managed by Sanofi to ensure there are no supply disruptions in New Zealand while we register changes to the manufacturing process. If you are having difficulty obtaining Rilutek please contact medical information on 0800 283 684 option 2 or via email medinfo.australia@sanofi.com
Update April 2019
Recently it has come to our attention that some of our clients have been prescribed the drug Riluzole (trade name “Rilutek”) by their general practitioner.
Under the Medicines Act 1981, Rilutek can only be prescribed by specialist physicians who care for patients with Motor Neurone Disease, neurologists and palliative care physicians. This includes repeat prescriptions.
Find out more about prescribing of Riluzole here.
Update July 2019
See the update on the 'Proposed changes to the prescribing of Riluzole - Ministry of Health Consultation open until 9th August 2019' here.
Update October 2019
Medsafe released the outcome of the consultation on the proposed changes. 28 submissions were received, all supportive of the change.
From 7th October 2019, the prescribing restriction on riluzole is:
”Riluzole can only be prescribed by authorised prescribers where the prescribing decision is taken in collaboration with, or following consultation with, physicians who care for patients with Motor Neurone Disease, neurologists and palliative care physicians.”
Click here to read the full statement from Medsafe on the consultation and outcome.
MND New Zealand are pleased with this outcome and agree that it is important for all people living with MND to have adequate access to riluzole, in all areas of New Zealand.
More on Riluzole:
A diagnosis of less than five years duration, with good respiratory function is necessary for approval. In addition the person must be ‘ambulatory’, or ‘able to use the upper limbs’, or ‘able to swallow’. These conditions are not defined in detail.
Most newly diagnosed individuals in New Zealand are eligible.
Riluzole, 100mg per day, results in a benefit of about 9% gain in the probability of surviving one year after treatment allocation, and increased median survival from 11.8 to 14.8 months. (Read the Cochrane Library review of Riluzole here.)
It is important to know that the loss of functions caused by MND will continue despite the treatment.
As with all drugs, some people may have a better response to Riluzole than others. It is impossible to predict the benefits that each individual will gain.
Not all patients tolerate the treatment but, overall, tolerance is satisfactory. The most common side effects of Riluzole are weakness, nausea, mild liver dysfunction and headache. Doctors can provide guidance on managing any obvious side effects and may arrange for people to have regular blood tests to ensure that Riluzole is not causing side effects of which the person is not aware.
Discuss with your neurologist if this treatment is right for you.
Motor neurone disease causes the muscles you have control over to weaken. This can include the muscles involved in breathing – the respiratory muscles.
Respiratory muscle weakness causes breathing to become shallower than usual. Less air is drawn into the lungs so less oxygen is absorbed into the blood. It is also more difficult to breathe out the carbon dioxide that is produced by the body.
Getting advice about respiratory management can help you live better for longer – even if you have not noticed any changes in your breathing. This will give you more time to get information, have discussions and decide which strategies are right for you.
Requesting a baseline measurement of your breathing function soon after diagnosis provides details about your 'usual' breathing and can be helpful for future treatment.
Respiratory muscle weakness usually develops gradually, but can occur suddenly. Sometimes, respiratory muscle weakness may even be the first sign of MND.
Let your doctor or Support Team Member know if you think you have respiratory muscle weakness. Changes that may result from respiratory muscle weakness include:
Positioning your body, adjusting air flow in the room, staying away from coughs and colds, maintaining a healthy diet, breathing exercises and saving your energy are just some of the simple techniques you can use to manage mild respiratory symptoms. See 'Breathing and motor neurone disease: what you can do' (PDF) for great information about all these techniques.
The way you manage your respiratory symptoms may affect how your other symptoms of MND can be managed.
Increasingly, many people with MND are choosing to use non‐invasive breathing support, known as non-invasive ventilation (NIV).
NIV gives you breathing support and provides relief from symptoms such as fatigue, breathlessness and disturbed sleep patterns.
NIV involves wearing a mask connected to a small pump that creates just the right pressure to keep your airways open so that room air can easily come in and out of your lungs when you breathe. People with MND most commonly use variable positive airway pressure (VPAP) or bi‐level positive airway pressure (BIPAP) machines. This is because these types of NIV machines can provide a lower level of pressure when you breathe out. In addition, these machines can be adjusted to provide increased respiratory support if needed.
The NIV machine is usually used at night but as the respiratory muscles weaken you might use it at times during the day as well. Over time, NIV will be less effective in helping control your respiratory symptoms, because your MND will continue to progress.
While NIV is suitable for many people with MND it is not suitable for everyone. The suitability of NIV for you will not be known until you have had a respiratory assessment.
The above information comes from MND Australia's evidence-based fact sheets. There is a lot more information provided in the relevant Fact Sheets below:
MND UK also has a useful fact sheet:
Fatigue is common when living with Motor Neurone Disease. By recognising the factors that worsen symptoms and by learning how to conserve energy, people with MND can improve their quality of life. Some strategies are:
Sleeping difficulties may be caused by a variety of reasons, for example, discomfort because of immobility, pain due to stiffness of joints or muscles, excessive saliva or dry mouth, or breathing problems.
People with MND may find it useful to have regular respiratory assessments, including sleep studies. These are most useful at a relatively early stage and their timing depends upon the level of abnormality detected. It may also be helpful to consider non-invasive respiratory support to improve sleep and daytime exhaustion or sleepiness (see Breathing and MND, above).
Different sleep strategies work for different people:
Many people will experience difficulty sleeping because of the emotional distress of receiving a diagnosis of MND or the stress of living with MND. In these circumstances the person with MND should be encouraged to speak with their neurologist or GP about counselling, ongoing support and medications to relieve anxiety or depression, if present.
The above information comes from MND Australia's useful booklet, 'Motor Neurone Disease: More Facts'. Download the PDF here
When a person has weakness in the muscles involved in chewing and swallowing, they may eat and drink less than they usually would, cough during mealtimes, take a long time to eat or be worried and anxious about eating and drinking. This can result in weight loss, malnutrition, dehydration and a loss of enjoyment of life.
The best evidence to date suggests that people with motor neurone disease who have a gastrostomy may live longer and have an improved sense of wellbeing.
Gastrostomy is a medical procedure during which a short, permanent tube is placed into the stomach through the abdominal wall. You can have liquid feeds and fluids through the tube, directly into your stomach, bypassing your mouth and throat.
This may increase or maintain your weight, improve hydration and help to reduce tiredness and hunger. Some people with MND can continue to take some foods and fluids by mouth after a gastrostomy.
People sometimes delay making the decision to have a gastrostomy. However, it is important to know that other symptoms of MND, such as respiratory muscle weaknesses and malnutrition, can affect your recovery from the procedure or prevent you from having a gastrostomy.
If you think you might consider a gastrostomy as an option in the future, you may need to have the gastrostomy before you really need one, while your respiratory function is above a certain level.
The above information comes from MND Australia's evidence-based fact sheets. See the relevant Fact Sheet below:
The MyTube website has informative short videos about feeding tubes for people with MND: http://mytube.mymnd.org.uk/
Many people with MND find treatment with complementary therapies helpful. Treatments such as aromatherapy, therapeutic massage, Indian head massage, reiki or reflexology may assist with stress management, pain relief, muscle cramps or relaxation.
Complementary therapies will complement existing medical care and should not be seen as a replacement to current prescribed medication.
Costly and unproven treatments are sometimes recommended by well meaning people. Professional advice should be sought before embarking on unproven therapies.
It is important to discuss the likely benefits of expensive therapy compared with, for example, changes to the home, employment of additional home assistance, or the peace of mind of the person who wishes to leave their family well provided for.
ALS Untangled
Helps people with MND/ALS review alternative, complementary and off-label treatments.
Nothing to Lose by Trying It booklet (PDF)
A very useful and through guide to how to weigh up claims of cures and interventions.
The internet can be a valuable source of health information. However health information on websites should not take the place of your health provider/patient relationship. There are many factors that need to be considered in relation to your health. You should use the internet as an information resource and ask a health professional about any issues raised by the information or anything that you don’t understand, such as medical terms.
You should also avoid any online health practitioner who proposes to diagnose or treat you without a proper physical examination and a full consultation regarding your medical history.
The International Alliance of ALS/MND Associations, of which MND New Zealand is a member, provides the following Statement on Alternative Treatments.
(The term ‘Alternative’ used here refers to treatments or interventions that are not part of mainstream, conventional or Western medicine and generally have not been scientifically documented and/or may not be recognised as being safe and effective for MND.)
The International Alliance of ALS/MND Associations:
When looking at alternative treatments, the International Alliance would recommend that you give careful consideration to the following questions to help you think through the issues and to make an informed decision:
What claims are being made for the treatment?
Often there will be claims of stopping the progression of the disease or of a reversal or improvement in symptoms. Check who is making these claims and what evidence there is to back them up. If the claims are genuine then they will have been published in recognised scientific journals and there will be published results of clinical trials.
How are people finding out about the treatment?
Any genuinely safe and effective treatment will be promoted and recommended by your doctor and the ALS/MND Associations.
Who is offering the treatment?
Is the treatment being offered by an appropriately recognised institution? Is it being offered by a number of different institutions or just one? If it’s just one then why are others not following and doing the same? Do you have to travel to another country to receive the treatment and if so why is it not available in your own country?
What are the risks involved?
Is it clearly stated what risks are involved in undergoing the treatment? Are there any side effects and how long may they last? Has the treatment been proved to be safe and effective and if so how was this done? Don’t forget that there can be financial risks associated with treatment particularly if it is expensive and involves overseas travel.
What follow-up monitoring is carried out after the treatment?
Follow-up monitoring is extremely important not just for you but for all those with ALS/MND. For you it is important to know that you will be monitored so that any adverse effects can be picked up as soon as they occur. For all those with ALS/MND they need to know if the treatment is successful and that they can rely on the claims being made.
Voice banking is the recording of your natural voice while it is still natural and strong, for the possible eventuality of losing your speech. Software may then use these recordings in a speech-generating device or on a computer, rather than producing a computer-generated voice.
You can voice bank on a mobile phone, computer, or digital voice recorder. As long as the recordings are produced in MP3 format, they can be used later within a speech generating device.
You may wish to include these categories when phrase banking:
You can get started straight away. Simply record words and phrases you may need in the future on your phone, computer or other voice recording device.
The ModelTalker project under Useful Equipment (see below) can help you through this process, and supply a synthetic voice based on your own voice, or a 'donor voice' such as a friend or relative.
Talklink Trust (Wahanga Tū Kōrero) has been operating since 1991 and specialises in assessment, support and Communication Assistive Technology / Augmentative and Alternative Communication (AAC). Find out more information: Talklink Trust
People with Motor Neurone Disease may experience some of these difficulties as the disease progresses.
Pain and discomfort are not caused directly by MND, as the neurones carrying sensory messages to the brain are unaffected. While most people experience little or no pain at any stage of the illness, others may experience some pain or discomfort such as:
Consult your physiotherapist for advice and GP for medication.
May be relieved by changing position when relaxing in a chair or bed. If this is not helpful the doctor may be able to provide a muscle relaxant.
Can be helped with gentle exercise (consult a physiotherapist).
Incontinence may occur if mobility is restricted and getting to the toilet becomes more difficult. An occupational therapist and community nurse can provide advice if this is a problem.
The bowel may become constipated due to restricted mobility and/or changes to diet. Increasing fluid and fibre may help, or ask your doctor to prescribe a laxative. Diarrhoea may be the overflow from a severely constipated bowel. Ask your district nurse or GP for advice.
If swallowing becomes a problem an excess of saliva may pool in the mouth, or the saliva may become thick and sticky. If this happens a GP will be able to prescribe medication to help. Consulting with a speech language therapist may also be helpful. Click here for more information on saliva control (PDF).
These may occur as a result of food or saliva becoming lodged in the airway, a speech therapist can provide techniques to help manage these episodes. Medications may be prescribed by the GP or specialist.
Eventually your breathing muscles will become affected the MND. When this happens a breathing assessment from a respiratory consultant is needed. Please see Breathing and MND (above) for more information.
Some people living with MND will experience difficulties with memory, learning, language and poor concentration. This is commonly known as cognitive change. Some of these difficulties may be quite subtle, while for others the change can be more pronounced and noticeable.
There are many products available to help people with Motor Neurone Disease. Some can be supplied by your occupational therapist or physiotherapist. It is recommended to discuss products with your health professional and MND New Zealand Support Team Member to determine the best one to suit your particular need.
Medical alarms help people with MND continue enjoying their independence for longer. They also provide reassurance for families and friends. St John is New Zealand’s leading medical alarm provider.
A MedicAlert bracelet connects emergency crews to your medical information, 24 hours a day, whether you are in New Zealand or overseas. This includes access to your written Advance Directives that tell medical professionals and emergency services how you wish to be treated in certain circumstances.
Predictable is a text-to-speech iPad app that uses intelligent word prediction, which learns your pattern of use, making typing and speaking much faster. You can use Predictable's voices, record your own voice saying familiar phrases, or use your voice banked ModelTalker voice (see below). Frequently used phrases can be saved for quick access. Switch accessible for those with limited hand movement. This is a paid-for app.
The ModelTalker voice-banking project provides software and assistance to help you 'bank' your own voice. Your recordings are then converted to a synthetic voice that sounds similar to your own. Your synthetic voice can be used to express almost anything, including words and phrases that were not recorded. ModelTalker also provides intelligible and natural-sounding voices for those whose speech is already impaired. This is a free service.
Please get in touch with us to recommend the equipment that works well for you.
Advice from the Wellington MND Support Group (2015)
Click to view a Word document containing a list of equipment that can help at different stages of life with MND. (Please note that funding differs between DHB areas.)
Equipment Services and Resources
For information on funding that may be available to you for equipment, please see the Financial Assistance page of this website.
TalkLink Trust
TalkLink Trust works with people of all ages who, due to a disability, have difficulties with speaking, writing and controlling their environment. The TalkLink Trust has contracts with the Ministry of Health and ACC which allows TalkLink to offer free specialist assessment services to eligible clients. This is a nationwide service.
Weka
Weka has disability information and resources, including lists of equipment suppliers for all kinds of devices that help people with disabilities.
Disability Services
For more information on the range of services to support people with disabilities and the people who care for them, please see the Ministry of Health's Disability Services website.
