A reality check about a cruel disease
To a lot of people it is just 3 letters MND, but what does it mean, what do those 3 simple yet devastating letters stand for? Let me explain from experiencing this first hand, the disease itself, the lack of awareness and the devastation it causes the individual and their families. I normally write light hearted articles, filled with humour and entertainment, but I feel this needs the attention it craves.
Motor Neurones Disease is what those 3 letters stand for, a disease that is not curable and attacks its “victims” with its own individual cruelness. So what does motor neurone disease do? MND is a neurological disorder that attacks the muscles causing them to weaken eventually leading to paralysis. Basically cutting out the electricity/signals to the muscle groups eventually causing them all to fail. This leads to the individual experiencing loss of mobility in limbs, difficulty with speech, swallowing and breathing. MND is a irreversible and progressive disease which goes to show how aggressive and cruel this disease really is.
Motor neurone disease is also known as amyotrophic lateral sclerosis commonly known as ALS…ringing any bells?
ALS was a widely popular subject back in 2014 when everyone on social media were taking part in the ice bucket challenge, making the videos and challenges go viral. You would have thought that a lot of attention would have been focused on the actual disease we were doing it for but unfortunately it seemed to turn more into a popularity parade on who could get the most likes and shares, which in turn shadowed over the main reason we were all doing it.
The sad fact about this was that research showed that only 1 in 10 who took part in the challenge actually donated towards the cause and out of those 1 in 10s how many actually looked into what ALS/MND is? You can see that this quickly faded away and people soon found another fad to take part in on the internet.
Since the 2014 ice bucket challenges nothing else has really ever been done to create awareness about MND and the worrying fact is that without awareness there are no donations and without donations there is no further progression in research.
In 2014 my future mother in law took part in the ALS challenge during the summer, a hilarious video that we all laughed about. A few months later she was given 3-5 years to live after being diagnosed with MND. Janine was also told that she had already probably had the disease for around a year making her death sentence even shorter. What has come to follow in the recent year and a half has been a rollercoaster of changes. I have witnessed the family fall apart and glue back together on many heated occasions, seen lives being changed just by seeing adaptations being built in the home preparing for the future. I have also seen a woman go from working all hours and up on her feet to being in a wheelchair near enough permanently. You really can’t understand this disease unless you have been around it or looked into more detail on the internet.
Bringing this story to a brighter side, you start to see the fight in these individuals, the determination to push further and live longer, making sure they don’t go down without a fight. The thing is their minds and hearts don’t change, they are still the proud beautiful people that graced this earth before the disease and that is what truly overpowers the darkness of MND, seeing the true grit of a human being.
MND needs more awareness, we need to create more events and fundraising. There may not be a cure at the moment but at least we can make the last few years of these people’s lives more comfortable with their loved ones.
Do not be blind to this disease, let us shout out and let MND know we are here for a fight.
Please note that the video may be upsetting to viewers but shows an accelerated progression of what MND does to an individuals body.