Motor neurone disease Hemonga iaia

MND affects people in different ways. There is no typical set of symptoms.

Depending on the type of MND, early symptoms are often mild and may include:

• reduced leg strength, perhaps causing you to stumble
• weaker hand muscles, making it more difficult to hold things
• weaker shoulder muscles, making it hard to lift your arms or objects
• slurred speech or a hoarse voice, particularly if you are tired
• difficulty swallowing
• muscle cramps, spasms or twitching.

Talk to your healthcare provider if you have symptoms.

MND may be hard to diagnose in the early stages as the symptoms can also be found in other conditions. These other conditions need to be excluded before a diagnosis of MND is made.

There are 4 types of MND:

• amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease — the most common type
• progressive bulbar palsy (PBP)
• progressive muscular atrophy (PMA)
• primary lateral sclerosis (PLS) — an extremely rare type.

Your healthcare provider will examine you and may do some tests. If they think you could have a neurological (brain and nerve) problem they may refer you to a specialist doctor (neurologist) for more testing and a diagnosis.  

There is no cure for MND but a lot can be done to maintain your quality of life as the disease progresses. Motor Neurone Disease NZ has a lot of information about the condition and where to get help.

Motor Neurone Disease NZexternal link

A range of healthcare providers may be involved in your care, working together to address your changing needs. Some will be more involved than others.

Tell them about your situation, needs and symptoms, and ask your healthcare provider if you have questions. If necessary, they will refer you to another healthcare professional who can help.

It is important to start to think about the future once you have adjusted to your MND diagnosis.

There are resources available to help guide you with advance care planning. This is a process of thinking and talking about your values, goals and preferences for your healthcare. You can write down the things that are important to you in an advance care plan. This will make it much easier for everyone to know what matters to you — especially if communication becomes difficult as the disease progresses.

Advance care planning — New Zealand Governmentexternal link

You might also like to think about voice banking. This is where you record your natural voice so it can be used later by a speech generating device, if you lose your ability to speak.

Voice banking — Motor Neurone Disease NZexternal link

Other things to consider are:

• creating (or updating) your will
• appointing an enduring power of attorney.

Enduring power of attorney — New Zealand Governmentexternal link

Give yourself time to adjust

After your MND diagnosis and as you learn about MND and how it may impact your life, you may have a range of emotions. You may feel:

• overwhelmed
• shock
• disbelief
• anger
• sadness.

Get support

It may help to talk about your feelings with whānau and friends. When you are ready, think about whether you would like to talk to others, read up about the disease or understand more about what to expect next.

Talk to your healthcare provider if you are having:

• persistently low mood
• difficulty sleeping
• low appetite or energy.

There may be support they can offer you.

Ask for help

Tell your healthcare provider about your situation and symptoms, and ask what help or options might be available. They may be able to put you in contact with someone who can help.

Help and support might involve things like:

• making things easier around your home 
• practical support to get things done
• getting referred to another person on the healthcare team. 

Needs assessment service

Look after yourself

It is important to recognise what you will need to be able to look after yourself. Understanding this may help you reduce your stress levels as well as manage your symptoms.

Looking after yourself might involve:

• getting emotional support as you adjust to the diagnosis and learn about how the disease might affect you
• seeking information to understand the disease better
• getting advice on managing symptoms, including how to manage things such as nutrition, getting better sleep or tiredness (fatigue)
• getting the right support to plan for the future, including how you might like end-of-life issues to be managed.

Conserving energy