A diagnosis of MND can feel overwhelming. You, your family and everyone close to you will need time to adjust. Living with MND is extremely challenging. However, it’s not necessarily as bleak as people imagine. With strong community and specialist support, many people maintain some independence for a significant part of the condition’s course, and experience a quality of life they may not have imagined possible at the time of diagnosis. The MND New Zealand Support Team will help you access the appropriate care to manage your symptoms, so that you can live your life as fully as possible.
Being diagnosed with motor neurone disease is a difficult and stressful time. You’ll probably feel incredibly overwhelmed in the first few days and weeks, and struggle to understand the ramifications involved.
You have probably had a difficult period of worrying about what might be wrong, and of hospital visits and specialised tests. It is common to feel shocked and somewhat stunned when you are given the news that you have a serious illness. (Read about others' experiences here.)
Almost everybody in this position finds that they have difficulty remembering what was said to them at the time of diagnosis. It can be very useful to request another appointment with your neurologist a little later to ask for the information you need. It may help to take someone else along, and to write down your questions before the appointment.
There will be limits to the information your doctor will be able to give you because every case of MND is different, but don’t be afraid to ask any questions you have. Being as informed as possible will enable you and your family to plan for the future.
Learning that you, or somebody close to you, have a serious illness brings with it a wide range of emotions, such as shock, disbelief, anguish, despair, anger, bitterness, and intense sadness. For many these emotions may be quite overwhelming for a while. This is a normal and common reaction to a distressing situation.
Be kind to yourself, tell yourself that this is a normal response and that the darkness you’re feeling will pass and you will start to feel more positive.
After these first reactions, most people go through a time of adjustment when they ‘rethink’ and review their life and plans in relation to the diagnosis. Some people feel their mind is working overtime, and perhaps they have a great need to talk about what is happening, while others may find that they wish to withdraw from outside contacts for a short while to process within themselves the implications of having MND.
Allow yourself the time and space you need.
Discussing and acknowledging feelings within the family, or with those nearest to you, is vital. You, and those you love, will probably experience a range of similar feelings, though possibly at different times. It can be reassuring to realise that you are not alone in your feelings, and you will be able to support each other more effectively if you are open about how you are feeling.
You are going to need your friends and family around you — not only to offer physical help but also to offer emotional support. Building a good support team is essential to carry on, to offer you choices but also to give your primary caregiver a break when necessary. Don’t be afraid to ask for help when you need it, people will be happy to help make life easier for you.
It is a normal reaction to feel low, or perhaps depressed at such distressing news. It may be helpful to talk to your GP if you have persistent difficulty sleeping, or if feelings such as loss of interest, appetite or energy persist or become overwhelming. You may find professional counselling helpful.
Look after yourself. It’s important to do the things that help your relieve stress such as yoga or meditation, and make sure you get plenty of rest.
Some people like to find out as much about MND as they can, by reading online medical journals, websites, information about research etc. Others prefer to get information in person from health professionals. Whichever your preference, it is good to understand MND and be prepared.
Anticipating what you’ll need for the next step of your disease will help you maintain control. Your MND New Zealand Support Team Member can help you get equipment before you actually need it, rather than waiting until you do.
Telling others about your MND diagnosis may be difficult. Some people share immediately with family and friends, others prefer to wait.
As difficult as it may feel at first, having open conversations about the impact of your diagnosis can be helpful. It may make it easier for everyone to share concerns, now and in the future.
Telling others can be more challenging than dealing with your own responses, so you may want some support. It can help to speak with a counsellor. For guidance about how to approach conversations about MND with children, please see Information For Children, below.
Some people may feel isolated by the diagnosis, because MND, though not rare, is not generally well understood. If you would like to talk to others who have experience of the condition, this can usually be arranged through your MND New Zealand Support Team Member.
Each individual with MND experiences their own unique combination of symptoms and will benefit from different combinations of care.
Our Support Team is experienced in making sure our MND clients have access to the right health service provider at the right time. MND Support Team Members offer one-to-one contact by phone, email, text, Skype and visits. They liaise with your healthcare team and may accompany you to appointments if you wish. The aim is to support you and your whanau and help you remain as independent as possible so that your quality of life and control is maintained.
Some people with MND hesitate to accept help and advice, questioning its value if the condition cannot be cured - but much can be done to manage the symptoms and difficulties experienced.
Don’t wait until things have become difficult before you accept assistance - managing MND is a team effort.
At various points along your journey you will encounter a range of specialists and services. Some will become involved with you more than others. You may not need all services listed below.
Research indicates that quality of life is improved when the health professionals and service agencies have a coordinated approach to care with regular communication liaison and networking. This extended team is often referred to as the multi-disciplinary team (MDT) or the primary health care team and will include some of the people listed below.
It is helpful if you can establish a relationship with these people early, even if you do not need specific assistance at that stage. They can help you to anticipate needs so that you don’t have to wait for assistance when you do need it.
General Practitioner
The general practitioner (GP) is usually the first point of medical contact for a person with MND. GPs can carry out a basic neurological examination, and recognise symptoms that indicate the need for referral to a neurologist. (MND NZ’s 'Red Flags' tool helps GPs recognise when this is the appropriate referral.) The GP will then liaise with the neurologist, other specialists and allied health care providers to provide on-going care and to maintain quality of life.
Neurologist
The neurologist does tests that exclude other conditions that are not MND before confirming MND. The neurologist will monitor the progress of the disease and help to initiate supportive care at appropriate times.
Occupational Therapist
An occupational therapist (OT) helps to maintain mobility, function and independence. OTs can advise on different ways of performing tasks and help you choose and obtain disability aids. Occupational therapists can visit private homes to advise on equipment or home alterations.
Physiotherapist
A physiotherapist helps maintain physical activity and mobility. Physiotherapists can instruct carers in the techniques of positioning and transfer to avoid injury to themselves or the person with MND.
Speech-Language Therapist
The speech-language therapist helps in the management of communication and swallowing. They can advise on strategies and devices to maintain communication, and advise on swallowing techniques and food consistencies that help compensate for difficulties.
Dietitian
A dietitian provides dietary advice to help you maintain adequate nutrition and hydration, at all stages of the disease.
Respiratory Specialist
The respiratory specialist is a doctor who works with a team specialising in disorders of the lungs and breathing. The respiratory specialist team provides information and advice about breathing difficulties that can occur with MND.
District Nurse
A community or district nurse can provide a range of nursing and ancillary services to people in their own homes. Services are usually obtained by referral from a health professional such as a GP.
Social Worker
A social worker can provide information on community services that may assist you with information about benefits, accommodation, legal, financial and other issues.
Counsellor
Psychologist or accredited counsellors support people experiencing significant change in their lives. Counselling is available through various agencies for the person with MND and their whanau.
Palliative Care Team and Hospice Services
The palliative care team specialises in supporting quality of life for people with life-limiting conditions. The team is often based at a local hospice and may include medical specialists, nurses, social workers and counsellors. They can help with emotional support, advance care planning, and advise about medications. Community teams support people to remain at home; respite care is available at some hospices as well as end-of-life support.
MND Clinic
Some DHBs provide specialist MND clinics. These provide reviews and then liaise with the various health professionals involved with an individual's care.
Needs Assessment and Service Co-ordination (NASC) Agencies
Local agencies assess and co-ordinate carer support packages to enable people to remain in their own home. They also co-ordinate arrangements for respite care, and for those who wish or need to move into residential care.
Total Mobility and Mobility Parking
Mobility Parking Permits can be purchased at a small cost through local agencies to enable parking close to facilities if mobility is an issue for you.
In some areas, local councils provide subsidised taxis under the Total Mobility Scheme for those unable to use public transport.
See Getting About for more detailed advice.
Life Insurance
Some policies allow for early pay-out following confirmation of an MND diagnosis by a doctor. Check with your insurer.
For more detailed information about financial support you may be entitled to, see Financial Assistance.
Although there is no cure for MND yet, research has shown some early interventions can help people with MND live better for longer. These include getting multidisciplinary care, having good nutrition and using non-invasive ventilation. See the Living Better For Longer section of this website for more information.
How people manage their earlier symptoms of MND, particularly respiratory symptoms, can affect how symptoms that may arise later can be managed.
Early discussion about symptom management can also help people with MND to plan ahead.
Your nearest MND NZ Support Team Member can provide you and your family with information, education, advice and support. Support Workers visit face-to-face when possible. They also provide email and telephone support.
There is one medication approved for treatment of MND in New Zealand: Riluzole (Rilutek). Riluzole prolongs median survival by two to three months. For more information, click here.
Some actions you might want to consider soon after diagnosis include:
Children quickly perceive and react to stressful situations - you cannot hide bad news from them. However, they recognise and appreciate honesty, and can deal with situations when they have basic factual information and straight answers to their questions.
They will need help in accepting the changes and difficulties that having a family member with MND will bring. Being included, opportunities to talk and ask questions, and your continuing love will help them to cope.
So long as it doesn’t interfere too much with their normal activities, it is important to allow children and teenagers to help with the care of a close family member with MND.
On request, we can provide you with Talking with young people about MND, a pack of six information booklets (8 to 20 pages each) from Australia's MND Care.
Skylight is a national not-for-profit trust that helps children, young people, their family/whanau and friends navigate through times of trauma, loss and grief. For a donation, they will post an information support and resources pack, tailored to your specific situation, anywhere in New Zealand. The resources provided by Skylight are excellent.
MND Scotland has a useful fact sheet called Telling Children About MND, and another booklet aimed at teenagers called So What Is MND Anyway.
The MND Association of England and Wales also has a range of advice including a web app for young people, called So What is MND Anyway?
Talking About Motor Neurone Disease is a useful information sheet for your child's or grandchild's school teacher or principal, by MND Australia.
A closed (private) Facebook group for people with MND and their carers, living in New Zealand. After requesting to join, please check your Facebook Messages (under Message Requests) and reply to the page admin's private message.
A website where you can share your story and medical data, and compare to others with MND/ALS.
Join us on Facebook for interesting and helpful articles, news updates and information.
A discussion site run by the Motor Neurone Disease Association of the UK, with help, advice, tips and experiences.
A closed (private) Facebook group providing support, information and perhaps hope to those living with the special challenges of being part of a Familial MND/ALS family.
The purpose of this US-based forum is to exchange information about MND/ALS, scientific advances in MND/ALS, and treatments for MND/ALS. Members include people living with MND as well as their carers, family, friends, neurologists, neurodegenerative disease researchers, and pharmaceutical executives.
A US-based forum for people impacted by MND/ALS, for exchanging information, providing moral support, caregiver support and general help.
There are several MND Community Groups being established around the country. These groups will provide an opportunity for a person with MND and their family to make direct contact with others in similar circumstances.
To find out if there is an MND Community Group in your area please contact your MND NZ Support Worker.
The following books can be downloaded, but they cannot be printed at home. We have applied for a grant to have these books printed and made available to clients via our support service.
Living with MND: Day-to-day is aimed at people with MND, their family and friends.
Living with MND: Aspects of care is aimed at people with MND, their family and friends.
There are many websites that have useful information for people with MND and their carers. We have provided links below to some useful third party websites containing information for people with MND and MND carers.
The inclusion of these links does not imply our endorsement of the sites (including the views expressed, any materials, products or services offered on such sites).We do not control such third party websites, and we are not responsible for the content on such linked websites.
Helps people with MND/ALS and health professionals review alternative, complementary and off-label treatments.
Strategies for people with a life-threatening illness. These ideas may help you find mental strength while you navigate the challenges of life after your MND diagnosis.
A free e-book or PDF by Dagmar Munn, who has MND, containing practical advice for creating a resilient life while living with MND.
Seniorline provides information on how to get help to stay at home and relief care options for caregivers. You can also call free on 0800 725 463.
At present the cause of MND is not understood, and there is no known cure. However, there is much that can be done to manage difficulties that arise.
Adjusting to the knowledge of your situation means obtaining the information you need, continuing as much as possible to do the things you enjoy and value, and learning to accept the support and assistance that you need.
Think about ways that you have been able to manage under difficult circumstances in the past. You may be able to call on those skills or resources in yourself again.
Also think about what might assist you to have a sense of hope. This could include a personal belief system, taking an interest in current research, finding out about management options, involving yourself in things you enjoy, etc. These strategies will enable you to make the most of your quality of life.
The physical effects of MND and the rate of progression of the disease vary from one person to another, so it is not possible to accurately predict how MND will affect you. It is important to plan for the future, but it is equally important to try and enjoy today, and to do things that enable you to remain in control as much as possible.
It is understandable if you feel frustrated at being unable to do things you used to do. But even if there are physical tasks that are difficult for you, you are still important as a spouse, parent, brother/sister, partner etc.
It may be necessary for you and your family to look at new ways of sharing tasks that will work for you. New ways of doing things may become necessary, and different hobbies and interests may be important - talk these over with those close to you.
MND New Zealand can offer support in a variety of ways. You may just wish to receive information, talk to somebody on the phone, or you might like to attend a support meeting.
