Motor Neurone Diesease Day (MNDD)
Article Date: 14-06-2019
On June 21st we’re celebrating and raising awareness for Motor Neurone Disease (MND) as it’s the national day in the UK as defined by the Motor Neurone Disease Association.
You have most likely heard of a person by the name Stephen Hawkins, and when you hear that name it’s probable that you think of the distinct chair that he sat in or the text-to-speech machine he relied on to communicate with others. But Hawkins wasn’t born like that, he had a progressive disease that gradually breaks down the nervous system – a type of Motor Neurone Disease.
Here’s NHS Inform’s definition of Motor Neurone Disease…
“Motor neurone disease (MND) is a rare condition that progressively damages parts of the nervous system. This leads to muscle weakness, often with visible wasting.
Motor neurone disease, also known as amyotrophic lateral sclerosis (ALS), occurs when specialist nerve cells in the brain and spinal cord called motor neurones stop working properly. This is known as neurodegeneration.” – NHS Inform
In most cases, the cause for a person to get MND remains unknown however there are around 5% of cases that can be put down to genetics – if there’s a history of the disease that runs in a person’s family for example.
As mentioned earlier, MND is a progressive condition that gradually deteriorates a person’s body over time and the early symptoms that a person might have MND are as follows:
- A weakened grip, which can cause difficulty picking up or holding objects
- Weakness at the shoulder that makes lifting the arm difficult
- A "foot drop" caused by weak ankle muscles
- Dragging of the leg
- Slurred speech (dysarthria)
It’s reported that the conditions often don’t cause any pain to people with MND in the early stages of the symptoms. However with time the effects of the disease start to spread to more areas of the body which can make simple tasks like communicating with others, breathing and swallowing difficult and eventually debilitating.
In the most recent NHS study it’s estimated that 2 in every 100,000 people are diagnosed with the disease, with an approximate 5,000 people living with MND in the UK at any one time.
MND is a condition that rapidly decreases the life expectancy of somebody who is diagnosed, over half of people with the condition have a life expectancy of just three years once symptoms start showing. Others may live for ten years, and in rarer cases such as Stephen Hawkins, people can and are known to live for much longer.
One thing to mention about people living with MND is that they’re incredibly brave, strong and resilient. Sure, reading the statistics of survival rates and life expectancy may seem daunting however, while doing my research I’ve come across some amazing communities which are lively, active and in place to help people who have MND. These people don’t give up on their independence or dignity either, together with their loved ones and professional support, they live their life to the fullest and to the best quality it can be.
If you’d like to find out more about MND, why not visit the Motor Neurone Disease Association website here.