My dad Neil was diagnosed with Motor Neurones Disease (MND)
on February the 14th 2015 and passed away on May the 14th
2015. Prior to this he had been a fit, active, footballing, cycling, triathlon
completing 55 year old that I struggled to keep up with on the football pitch.
Needless to say all this happened out the blue and was a massive shock on the
whole family. (I will write more about
this later)
About MND:
MND is a fatal, rapidly progressive disease that
affects the brain and spinal cordIt attacks the nerves that control movement:
people can still think and feel, but their muscles refuse to work.It can leave people locked in a failing body,
unable to move, talk and eventually breathe.It affects people from all communities.
It kills five people every day in the UK, half
within 14 months of diagnosis.It affects up to 5000 adults in the UK at any
one time.It has no cure
I would just like to take a bit of time to talk about this
last bullet point. IT HAS NO CURE. This is a part that I found particularly
hard to deal with when the news was shared and still do if I’m honest. I was
really cross and upset that he wasn’t given a chance. Most other diseases
people have a chance even if it is a tiny one. He deserved a chance. Anyway,
that is a pretty selfish thing to say because as cross and upset as I was, and
still am about this fact, my dad’s approach was entirely different but not
surprising to me in the slightest. I wasn’t surprised because this was his
approach to life in general. On the day that he came to tell me the awful news
his parting words before he left to give the same news to my sister were
“Obviously I will be the one person who defies medical science and beats this
thing”. He said it with a smile on his face but I’m pretty sure that on some
levels he meant it whole heartedly.
If there is any good to have come from this crappy situation
it’s that I feel motivated to try and help sufferers and their families in
similar situations. This can only be achieved by raising funding for
technology, care, research and raising awareness. So the idea initially was
that myself and a few close mates were going to complete the Coast 2 Coast bike
ride. This has escalated into a series of events throughout 2016. Some of these
events we are all doing. Some are being done by a few of us. Some are being
done by one of the group. A couple of them have been entered using Golden Bond
places directly from MNDA and therefore come with a minimum amount of money
that needs to be raised. I have highlighted the golden bond events and amounts
of money that we need to raise for these below. All of the Golden Bond money
goes directly to the charity it is just a way of securing a place before the
event ballots open so that we are definitely in.
The events are as follows:
April 10th Manchester Marathon (Joe)
April 24th Stockton Duathlon (Jonny, Dave,
Stephen)
May 22nd Manchester 10K (Jonny, Joe, Hayley,
Dave?)
July 9th and 10th C2C (Jonny, Joe,
Purv, Si, James, Gaz and the girls on support)
May 28th 29th 30th Neil
Scott Memorial ride Leamington to Stadium of Light Sunderland. Organised by one
of Neil’s friends that he used to cycle with. (Jonny, Hayley for last 30 miles)
July 31st Ride London 100 miles cycle (Joe)
Golden Bond X1 = £550
September 4th PARA 10mile race with 35lb Bergen
@Catterick (Jonny, Matt)
September 11th Great North Run (Jonny, Joe, Hayley)
Golden Bond X2 = £850
Golden Bond Place total = £1400
We decided to try and put a theme on the events so we
decided to add up all the miles that we will collectively cover during the
fundraising in an attempt to travel the distance of Leamington (where my dad
lived) to Lake Garda in Italy (where my dad loved to holiday). This is where we
got the name 1000 miles for MND. Our twitter page is called @C2CforMND as this
was the original idea so please follow this as we are still using it to promote
the whole effort.
I have set the target for donations at £3000 because that
would buy a Lightwriter that would give someone back the ability to communicate
with their loved ones. This is an aspect of MND that affected my dad very early
in his degeneration. He was quickly left with no voice at all and this was
something that I know he found really difficult and frustrating. Unfortunately
he wasn’t around long enough to get the necessary technology to regain
communication. We were simply told that these machines were in high demand and
there wasn’t many around. What we did have was a laminated piece of A3 paper
with coloured letters around the outside and a clear window in the middle. We
used this by holding it up and looking through it at my dad’s eyes while he
looked at a sequence of colours and letters and we wrote down what he had spelt
out. I’m sure you can imagine that if you had to communicate with your
parent/loved ones like this it would not be acceptable. Despite this my dad
worked till the day he died. He loved his job and wasn’t going to let a little
thing like not being able to speak get in the way of it. As some of you know I
was working for the family business at the time selling the play areas that we
manufactured. My uncle also worked for the business and we were in the middle
of a big job while my dad was poorly in hospital. We would meet around his bed
and spend what seemed like hours reporting back to him and him messaging what
to do next using the bloody laminate. I’m sure it was only a few minutes at a
time as he tired so quickly but it felt like hours because it was a painstaking
process. Anyway the day before he passed away he was indicating letters by
moving his eyes, I was interpreting and my uncle was writing down. He messaged
N then H then S and we kept repeating it back and saying that can’t be right
and asking him to do it again. By this point he couldn’t nod his head to tell
me it was right and he would just sign it again. Then I realised he was
messaging “Does the NHS have play areas”. When me and my uncle said it and my
dad confirmed it we just laughed out loud and said for god sake dad. It would be amazing if we raised that
amount of money but hopefully we will smash that total and go even further.
Any donation big or small will be massively appreciated and
go to an amazing cause.
Thank you for taking the time to read this waffle. Please
don’t judge my bad spelling and poor grammar.
Jonny Scott
