What is Motor Neurone Disease?

Motor Neurone Disease (MND) describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord. These nerves tell your muscles what to do. With MND, messages from these nerves gradually stop reaching the muscles, leading them to weaken, stiffen and waste.

Every case of MND takes its own course, but the disease may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided. Not every person will experience all of the possible symptoms of MND and not everyone is affected in the same way. Because of this, MND can be an extremely difficult condition to diagnose in its early stages because few cases of MND follow exactly the same pattern.

There are three main types of MND:

  1. Progressive Muscular Atrophy (PMA) PMAaffects the nerves which connect to the muscles and causes muscle loss and weakness, loss of weight and muscle-twitching. This is a relatively slow progressing type of MND;
  2. Primary Lateral Sclerosis (PLS) PLSaffects the nerves which leave the brain and causes increased muscle tension. This results in stiffness of the limbs, known as spasticity, especially in the legs. This form of MND typically affects people over the age of 50. It is a very rare type of MND and progresses slowly;
  3. Amyotrophic Lateral Sclerosis (ALS) ALSis the most common form of MND and affects both the nerves leaving the brain and those going into the muscles. This means someone may experience both muscle weakness and muscle stiffness in any part of their body.

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Symptoms of Motor Neurone Disease

MND can affect how you walk, talk, eat, drink and breathe. Some people also experience changes to their thinking and behaviour. However, MND affects everyone differently. Not all symptoms will affect everyone, or in the same order. Symptoms also progress at varying speeds, which makes the course of the disease difficult to predict. Common symptoms include:

  • Muscle cramps and spasms
  • Muscle weakness
  • Stiff joints
  • Pain or discomfort
  • Speech and communication problems
  • Swallowing difficulties
  • Saliva problems
  • Weakened coughing
  • Breathing problems
  • Changes to emotional state
  • Changes to thinking and behaviour.

Statistics on Motor Neurone Disease

  • Motor neurone disease is a rare condition that has an incidence of around two in every 100,000 people in the UK each year.
  • This means there are about 5,000 people living with the condition in the UK at any one time.
  • 6 people are diagnosed each day.
  • The condition can affect adults of all ages, including teenagers, although this is extremely rare.
  • It is most commonly diagnosed in people over 40, but most people with the condition first develop symptoms in their 60s.
  • It affects slightly more men than women.
  • Around 35% of people with MND experience mild cognitive changes, which can cause issues in executive functions such as planning, decision-making and language.

Unfortunately, Motor neurone disease is a severely life-shortening condition for most people. Life expectancy for about half of those with the condition is three years from the start of symptoms. However, some people may live for up to 10 years, and in some circumstances even longer.

Treatments for Motor Neurone Disease

There is currently no cure for motor neurone disease. Treatment aims to:

  • Make the person feel comfortable and have the best quality of life possible
  • Compensate for the progressive loss of bodily functions such as mobility, communication, swallowing and breathing.

CED and Motor Neurone Disease

Convection Enhanced Delivery (CED) allows the delivery of drugs directly into the brain and central nervous system. There are therapies at a preclinical stage that when delivered via CED may have an impact on Motor Neurone Disease. Preliminary research using this combination is currently underway for this condition with Funding Neuro providing funding towards this.

Further support

Please contact us at Funding Neuro with any further questions or concerns. We do not offer support, but our staff are experts and can guide you as to the best options or put you in touch with other organisations who can help.