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 www.mndassociation.org or you could simply make a donation to the
MNDA via this fortycubed link.
Thank you so much!!
Debbie xx
