Newly diagnosed?

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.

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.

Show yourself some compassion

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.

Get support

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 and make sure you get plenty of rest. Things such as yoga, meditation, and spending time with family and friends, may help to reduce stress levels.

Stay one step ahead

Some people like to find out as much about MND as they can, by reading online medical journals, websites, or information about research. Remember not all information on the internet is factual or necessarily applicable to you. 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 link you in with the appropriate health professionals and services in order for you to get equipment in a timely manner.

Talking to others about MND

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, click here.

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.

Early symptom management

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.

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 Team Members 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). Early research showed Riluzole may prolong median survival by 2-3 months, but a recent review has shown it may prolong survival for 6-19 months. For more information, click here.

Actions you can take

Some actions you might want to consider soon after diagnosis include:

• Connect with your MND NZ Support Team Member
• Voice banking
• Respiratory assessment and possibly non-invasive ventilation
• Discuss Riluzole with your neurologist
• Meet your multidisciplinary team
•  Register with the New Zealand MND Registry
• Fill in the ALS Quest online research questionnaire (and ask your partner or a close friend or family member to do it too)
• Write a bucket list. Include all the activities you want to do and places you want to see and try to do as many of them as you can
• When you are ready, some people find that planning for the end of their life is helpful.

What next?

• 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.