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Motor Neurone Disease Awareness Month

20 June 2015

Motor neurone disease (MND) is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.

MND poster on London tube

MND can affect how a person walks, talks, eats, drinks and breathes. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order. Although there is currently no cure for MND, symptoms can be managed to help sufferers achieve the best possible quality of life.

Brief guide to MND

The French Neurologist Jean-Martin Charcot first described Motor Neurone Disease in 1874. The term Motor Neurone Disease, describes a group of related diseases, affecting the motor nerves or neurones in the brain and spinal cord, which pass messages to the muscles telling them what to do.

What Does MND Affect?

MND is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. The muscles first affected tend to be those in the hands, feet and mouth, dependent on which type of the disease an individual is diagnosed with.

MND does not usually affect the senses or the bladder and bowel. Some people may experience changes in thinking and behaviour, often referred to as cognitive impairment, but only a very few will experience severe cognitive change. The effects of MND can vary enormously from person to person, from the presenting symptoms, and the rate and pattern of the disease progression, to the length of survival time after diagnosis.

What are the symptoms?

Not everyone will experience all of the following symptoms, or in any particular order. An individual may even have symptoms that are not mentioned here, as the disease can affect everyone differently, or an individual could have another unrelated problem which also requires medical attention, so people are advised to speak to their GP about any concerns. Common symptoms are:

  • Muscle weakness,
  • Twitching (and fasciculations - rippling sensations under the skin),
  • Muscle tightness and/or cramping,
  • Breathing difficulties,
  • Swallowing problems,
  • Saliva and mucus problems (can gather in the mouth and throat),
  • Speech and communication difficulties,
  • Fatigue,
  • Pain,
  • Emotional liability (involuntary/inappropriate laughing and/or crying, difficult to control and distressing),
  • Emotional reactions (anxiety, fear, anger, sadness, depression and disbelief),
  • Cognitive changes (difficulty thinking, concentrating, planning things and interacting with others).

Diagnosis

Motor Neurone Disease can be extremely difficult to diagnose for several reasons:

  • It is a comparatively 'rare' disease,
  • The early symptoms can be quite slight, such as clumsiness, mild weakness or slightly slurred speech, all of which can be attributed to other reasons. It can be some time before someone feels it necessary to see a GP,
  • The disease affects each individual in a different way, so there is no definitive set of symptoms.,

There is no specific way of testing for MND, which means diagnosis requires the elimination of other potential conditions. When someone first realises that something is wrong they usually go and see their GP (family doctor) for advice. The GP might refer them to see a neurologist, a specialist in conditions that affect the brain and nerves. The neurologist will examine and question the person on how the symptoms are affecting their daily life. There is no single test that proves someone has the disease, so specialists will do lots of different tests to make sure it isn't something else before they tell someone they have MND.

Types of MND

There are four main types of MND, each affecting people in different ways. Although someone might be diagnosed with a particular type, one type can turn into another over time. This means that sometimes a person might not know what kind of MND they have.

  • Amyotrophic lateral sclerosis (ALS) is the most common form of MND. People who have this form of the disease often start by having weakness and wasting in their arms and legs. Someone may first notice they are tripping up when walking or that they drop things.
  • Progressive bulbar palsy (PBP) affects about a quarter of people diagnosed with MND. People with PBP may find that their speech starts to slur or they may have difficulty swallowing.
  • Progressive muscular atrophy (PMA) affects only a small proportion of people. To start with people may notice weakness or clumsiness in their hands.
  • Primary lateral sclerosis (PLS) is a rare form of MND causing mainly weakness in the lower limbs, although some people may experience clumsiness in the hands or speech problems. Many people with PLS live as long as they would have if they didn't have the disease.

Is there a cure for MND?

Unfortunately, there is no cure for MND at the moment. People who have MND do not get better and people do die from MND.

Who is at risk of developing MND?

In recent years there is evidence to suggest the incidence of MND is increasing. This could possibly be due to more accurate diagnostic testing. Also, as people are generally living for longer, the incidence of a disease more common in older people will continue to increase.

It is difficult to be exact, but statistics for MND tell us that:

  • It can affect any adult at any age but most people diagnosed with the disease are over the age of 40, with the highest incidence occurring between the ages of 50 and 70,
  • Men are affected approximately twice as often as women,
  • The incidence or number of people who will develop MND each year is about two people in every 100,000,
  • The prevalence or number of people living with MND at any one time is approximately seven in every 100,000.

What causes MND?

Each individual may be affected by a different combination of triggers, both genetic and environmental, which makes it very difficult to determine precise markers for the disease. The Motor Neurone Disease Association Website has information sections on Causes and Research into causes.