HealthInfo West Coast-Te Tai Poutini
Motor neurones are the nerves in your brain and spinal cord that carry messages to your muscles to get them to move. In motor neurone disease (MND) these nerves are destroyed. This leads to your muscles becoming weak.
MND comes on gradually. It usually starts with reduced strength in an arm or leg, or with swallowing or speech difficulties. It may be quite hard to diagnose in the early months of symptoms, as symptoms may not be obvious. Over time, movement becomes more difficult, and diagnosis becomes clearer. Eventually breathing can be affected.
If you're getting new symptoms that could suggest a neurological condition like MND visit your GP. Your GP will perform an assessment and arrange any further tests or referrals that may be needed to diagnose MND, or to find another cause. If MND looks likely, then your GP is likely to send you to see a neurologist for a formal diagnosis.
Unfortunately, there's no cure for MND. But a lot can be done to maintain your quality of life. Motor Neurone Disease Association of New Zealand has a lot of information about the condition and where to get help.
Once the diagnosis is made, your specialist is likely to put you in contact with the motor neurone disease nurse specialist who will support you. They can help with adjusting to the diagnosis, and accommodating changing needs as they arise. This might mean arranging home support, or rehabilitation with a physiotherapist, disability aids or equipment for use in the home from an occupational therapist, or support from a speech-language therapist for concerns about swallowing. The service aims to respond quickly to the needs of patients with MND. Your GP or specialist is also likely to continue to help you with medications to control symptoms as they arise.
Once a diagnosis of MND has been made it's important to start to think about the future. Decisions can be made in advance so that when the disease gets worse, you're prepared. At some point in the disease, communication will become difficult so make sure to talk about the important issues before that happens. See Advanced Care Planning (ACP) for more information.
HealthInfo recommends the following pages
The Motor Neurone Disease Association offers support and information to people diagnosed with motor neurone disease and their carers, families and whānau, and health professionals. The association offers information and support through trained fieldworkers. Understanding motor neurone disease gives an overview of the disease.
Written by HealthInfo clinical advisers. Last reviewed September 2019.
See also:
Review key: HIMND-38768