Motor Neurone Disease (MND)

Are you up for the Ice Bucket Challenge? Or maybe a cup of tea with friends is a little more your style! June is Motor Neurone Disease Action Month and donations raised for completing a tip or pour challenge go toward “making time count” for New Zealanders affected by the neurological condition Motor Neurone Disease.

The statistics on Motor Neurone Disease in New Zealand are sobering. Three people are diagnosed, and two people die each week from this disease.¹ I contacted a fellow pharmacist, Natalie Gauld, for up-to-date information on MND in New Zealand. Natalie, diagnosed with MND in March 2022 said “MND is actually more common than you think – it kills about a third as many people as the road toll every year and has a lifetime incidence of about 1 in 300”.

Currently there are over 300 people affected by a form of MND in NZ. In most cases, a diagnosis comes with a limited life expectancy – on average the life expectancy after diagnosis is two to three years.

The Challenges Of Living With An MND Diagnosis

MND is a challenging disease because not only is it a terminal condition but the person faces constant change in body function along with increasing paralysis. Their dependence on others to function in their daily life also increases. This constant change means continual adaptations and many visits with health professionals are needed. Friends, whānau and Motor Neurone Disease New Zealand provide important support to help the person with MND and those living with them to “make time count”.

Natalie provided her insights – “The simplest things that everyone takes for granted become very difficult or impossible: showering, getting out of the house, speaking, household chores, cooking, going to the supermarket, putting on shoes, turning over in bed, walking or standing. Energy levels become depleted.”²

MND Is Actually A Group Of Diseases

There are four main types of MND (the most common type is Amyotrophic Lateral Sclerosis (ALS)) that differ in how long it takes for the disease to progress, which parts of the body are affected, and the predicted life expectancy. What all the types have in common is that they affect the motor nerves (neurons) of the body. Motor neurons are the nerves that carry messages from the brain, via the spinal cord and to our muscles helping us to talk, swallow, move and breathe. How the disease progresses will vary from person to person but in every form of MND the nerves become damaged and start to die. When this happens, muscles begin to weaken and waste away.³

Early Signs And Symptoms Of MND

In many cases the very early symptoms of MND are hard to notice, often put down to “growing older” – weakness in arms or legs, cramps, muscle twitches, stumbling, dropping objects, finding it difficult to swallow or slurred speech. The different forms of MND mean that symptoms may vary between people. Common symptoms as the disease begins to progress are weight loss, fatigue, reduced mobility, weakness, breathing challenges and difficulty swallowing along with cognitive and behavioural changes.

Theories About Causes

There are several theories about what might cause or contribute to the development of MND. The disease could be immune related, a result of a viral infection or from environmental exposure to a toxin or chemical. One in ten people have a family history of MND so genetics plays a role. Any of these potential causes may act individually or in combination to contribute to MND development.⁴

What Treatments Are Available?

Unfortunately, there is no cure for MND, but there are medications that are used to ease some of the symptoms (e.g. for breathlessness, drooling, muscle stiffness and cramps) as the disease advances.

There is one funded drug available in New Zealand that is prescribed for ALS – riluzole can help slow down disease progression. Research has shown that the survival benefit can be as great as 14 months, especially in younger people.⁵

Natalie had information on new treatments and research – “There has been an exciting new medicine called tofersen for people with a particular gene mutation (SOD-1) that happens in about 2% of people with MND. Genetic testing is funded in NZ for MND and would show whether that medicine is suitable for you. Currently it may be available for people through compassionate access. This gives hope that we can find medicines for other people with MND. We are very lucky to have the Scotter Lab at the Centre for Brain Research at the University of Auckland. This lab has 10 researchers working on MND research helping to understand it better and working with international networks to progress the science and hopefully help to find better treatments or a cure. Researchers around the world are working hard to find better treatments”.

The main goal when treating Motor Neurone disease is to improve the quality of life – this is where the phrase “making time count” comes in. Get your friends and family together for a cuppa fundraiser or an ice bucket challenge to support the cause! If you know someone affected by MND, ask what you can help with – as Natalie says, “People with MND often have purpose and enjoyment from life and MND NZ want to support that.” She suggests “it might be as simple as picking up a bottle of milk when you visit, taking them out, or time with them to give their family member a break”.

Get behind MND Action Month