Friday, 30 June 2017

It's All in the Eyes

When Jac asked me to champion a charity for her fortycubed fundraising challenge, I felt really honoured to be considered and without hesitation, knew it had to be the Motor Neurone Disease Association, a charity working tirelessly to help those diagnosed with MND…my Mum was one of these people.

Did you do the Ice Bucket Challenge?

Who didn’t do the ice-bucket challenge?! It was the spine-tingling and teeth chattering challenge that swept the world, back in 2014.  I took great satisfaction pouring an extra large bucket of water full of ice-cubes over my husband and donating in aid of ALS!  I had no idea what ALS was. It was the first time I had come across these three letters, along with another three simple letters, MND, that hauntingly returned to rock my world.  Five months after my ice bucket challenge, little did I know that my dear, sweet, lovely Mum would be diagnosed with MND, and die from this disease just six months later.

Mum the Button

I heard a saying once - “Mums are the buttons of a family”.  I never really understood what it meant until I became a Mum.  That’s when I truly appreciated what a fantastic “button” my Mum had been! She raised four fantastic daughters (!) and embraced Grand-mother-hood with such gusto!  These photos of my Mum say it all – never happier than with a babe in arms. She took much joy from comforting a baby and was brilliant at it!

Mum was the quiet one of our family – the doer, who would diligently beaver away in the background, creating all the great things that imbed happy childhood memories and that hold a family together – the magic, invisible thread. Even as adults, there was always a strong desire to gravitate to our “Oracle” Mum.

When Mum was diagnosed with Motor Neurone Disease, none of us could prepare for just how quickly she would deteriorate, nor how much our family unit fell apart when our bright, beautiful button was no longer there.

Why Our Mum?

This was a question we asked time and time again. Why was such a fit and healthy woman in her 70’s, still travelling the world, still hiking up hills, still teaching her grandchildren how to skip, struck with this disease?  The simple answer is - there is no answer.  Motor Neurone Disease appears to have no real pattern.  It can affect both young or old, fit or unfit, man or woman and there is no cure.  I am sure everyone knows Professor Stephen Hawkins, who still lives, 40 years on, with Motor Neurone Disease.  We held on to his example as hope for our Mum when she was first diagnosed, but soon realised he is a unique anomaly. The average life expectancy for those with MND is two years.

Mum was a great coper, having dealt with a really tough childhood, she was able to face any hardship, so when she started experiencing strange tingling sensations in her mouth, she didn’t fuss or go to a doctor.  Nor did she make a big deal about choking on certain foods with increasing regularity.  It was when Mum’s voice started to become slurred, that we all started to worry for her and quickly sought expert advice from Neurological consultants. This is when we discovered diagnosis of MND is notoriously difficult and by Christmas 2014, Mum’s voice had virtually disappeared and she was communicating with us via a whiteboard and lots of hand gesticulations.  It wasn’t until February 2015 that we finally had confirmation from a leading MND expert that Mum had Progressive Bulbar Palsy, a particular type of MND that starts in the throat region and moves aggressively across the rest of the body, attacking the nerve endings that enable the brain to operate the body’s muscles.

In the next few months we found ourselves unable to keep up with just how quickly the disease took over our Mum. By February, Mum was in a wheelchair; March, she was being fed intravenously; in April, she was only able to use her thumb to communicate – up or down; May was Mum’s birthday month and although the smile from the lips was lost, the eyes still had it. By June Mum was completely trapped inside an immobile body. On 17th July 2015, poignantly the day after her 55th Wedding Anniversary, sadly, Mum’s biggest muscle stopped working in the heart and she passed away.  She was the bravest, most gracious and dignified person to have coped with this debilitating disease.  Even when she was unable to move, her eyes spoke a thousand words and one carer, who had only known my Mum in the last stages of her life, said, “I can see she is a really lovely, kind lady because… It’s All in the Eyes”. 

The Motor Neurone Disease Association

It will be two years this month that Mum passed away and I want to continue, in her memory, to raise awareness of MND and all those who are living with it. Six people a day are diagnosed with MND and 2,200 people die from this incurable disease every year. The Motor Neurone Disease Association (MNDA) is the only national charity in England, Wales and Northern Ireland dedicated to campaigning to improve care and support for people affected by MND. It also funds and promotes research to help understand the disease, with the hope of bringing us closer to a cure for MND.  I spent many hours trawling through the wealth of information from the MNDA website and online forum, and gained great comfort from being put in contact with local MND support networks. The MNDA relies solely on charitable donations and although small in comparison to other charities, does big things to help raise awareness and give a voice to those who can no longer shout for themselves.

I would like to urge anyone who has read this far (well done, by the way! Sorry it’s been so long!) and wants to learn more about MNDA, to visit or you could simply make a donation to the MNDA via this fortycubed link.

Thank you so much!!

Debbie xx