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Motor Neurone Disease Awareness Month 2016

It’s hard to believe that two years have already passed since the Ice Bucket Challenge. You may remember that people all over the world doused themselves in buckets of cold water before donating money to the respective charities in their home countries. This was to raise awareness of the sensations that Motor Neurone Disease has on the body and for others to experience it.

Before 2014, few people knew what MND was, let alone list its symptoms. All most people knew about it was that the scientist Stephen Hawking had it and had defied all expectations in living with the condition for 50 years – specifically that he is an unusual case for living with the condition for so long.

What is Motor Neurone Disease?

The disease is terminal for patients, but it is a rare condition. It attacks nerves in the brain and spine. The important electrical impulses that we use to move, walk, brush our teeth, stand, sit – everything that uses motor function is affected. These simply slow and eventually, stop. Vital organs shut down slowly, but the brain is the last to go. Patients are aware of their body closing down around them.

Early symptoms are typically:

  • Pain all over the body including stiff joints and regular inexplicable cramp
  • Patients become increasingly clumsy
  • Patients may also suffer increased incontinence in the bladder and bowels
  • Speech becomes slurred
  • They will soon develop problems with eating and drinking
  • They will also develop problems with their respiratory system. They will wheeze, cough and generally struggle to breath
  • Concentration and other cognitive problems will develop (although this is not always the case).

The majority of new diagnoses are in people over the age of 50. However, juvenile onset is possible but rare. Stephen Hawking first received his diagnosis as a PhD student at age 21.

The Four types of MND

Most people are not aware that there are four different types of MND. How long the patient lives and what their symptoms are depend on which type they have.

  • Amyotrophic lateral sclerosis, or most commonly known as ‘ALS’. This is the most common form of Motor Neurone Disease, affecting the upper and lower motor neurones. The patient will suffer wasting of muscle mass in the limbs and physical weakness. Patients can except to live between 2 and 5 years with present treatments.
  • Progressive Bulbar Palsy or PBP affects around 1 in 5 of people diagnosed with MND. Difficulty swallowing means that patients struggle to breathe. Speech becomes increasingly slurred. Patients can expect to live between 6 and 36 months.
  • Progressive Muscular Atrophy or PMA is a rare type of a rare disease. It affects the lower neurones only, meaning increasing clumsiness is the main symptom. Patients can expect to live, on average, for more than 5 years.
  • Primary Lateral Sclerosis or PLS is the least common form of MND. It is the upper neurone counterpart of PMA. It causes weakness in the limbs and patients could conceivably live to a normal long age, although it will decrease quality of life and limit what they can do.

Football vs MND

In the lead up to the Ice Bucket Challenge in 2014, and perhaps spurring on its popularity in this country, the MNDA worked in association with various football clubs in the 2013-14 season. The main inspiration was that the Altrincham Town FC player Mark Maddox was diagnosed with MND in 2011. He is the most high-profile footballer to have contracted the disease. The campaign attracted the attention of 1.5m football fans across the country but for Maddox, the fight went on.

In the last year, his condition has worsened. In April on his blog, he wrote about how he feels like a baby again having people do everything for him. He lived for football and now laments that he will never again be able to kick a ball.