Four years ago today my first son was born, the most amazing and magical experience you can imagine as any parent will tell you. This new little person changed my world forever and made me realise what a huge capacity I had to love and the true meaning of being selfless. I could tell you about how wonderful my little boy is, about all the things he likes to do, how he makes us laugh, surprises me with the things that he is able to do, but I'm sure every parent has the same story and as much as I may love talking about my gorgeous little boy it is probably very boring to listen to! 

Something else happened four years ago today. Something that changed my life forever but not in the amazing way like having my son. Four years ago today my Dad was diagnosed with Motor Neurone Disease. 

Imagine that. Imagine receiving a phone call from your daughter at lunchtime to tell you that you are a Granddad for the first time, how happy and excited you would feel, and then going to see your consultant to be told that you have Motor Neurone Disease which has no known cure and that your life expectancy is unknown and probably likely to be between 2 to 5 years. 
Not such a cheerful post as the birthday celebrations topic, but a very important one nevertheless. Motor Neurone Disease (MND) is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. There are four main types of MND, each affecting people in different ways, for some people it starts with their lower limbs and others (like my Dad) it starts in the upper limbs. This meant that the muscles in my Dads arms and hands began to waste away, he was unable to raise his arms very high or to use the fine motor skills in his fingers. At first his speech appeared slurred as the muscles in the mouth are affected too, and within the first 12 months it was almost impossible to understand what he was trying to say. His ability to swallow was also affected, meaning fairly early on he struggled to swallow his food without choking a little, and 11 months after diagnosis the decision was made to fit a feeding tube directly to his stomach as he had lost so much weight. 18 months after diagnosis my Dad went into hospital with a chest infection, one of many that he had suffered from following his diagnosis, he fought a hard battle but sadly this was one he was not going to win and after many days in hospital with some fantastic care and support he lost his battle and passed away.

 Around 5,000 people in the UK have MND at any one time. With no cure half die within 14 months of diagnosis and on average 5 people a day die of Motor Neurone Disease.  

Imagine being in a body where your brain is functioning as normal but you are no longer able to speak, no longer able to use your arms or hands properly, not even able to eat food. You are totally dependant on other people. For someone like my Dad who was a very active, independent, and knowledgeable person it was absolutely heartbreaking to see him suffering from this hellish disease. To see him shrink away when we were having conversations that he would normally have loved taking part in, and basically lose the ability to do all the things he enjoyed doing as he became trapped inside his body. It is impossible to convey in words the overwhelming and devastating nature of a disease which in as little as a year can turn a potent, able parent, partner and employee into someone totally dependent on others for the simplest and most private actions we all take for granted. 
This is a disease that still relatively little is known about, and few people have even heard of unless they have been unfortunate enough to be diagnosed or know someone that has been diagnosed with MND. There are many inspirational people such as  Alistair the Optimist who was diagnosed with MND in 2010 and has been doing an amazing job of raising awareness of Motor Neurone Disease. Alistair is spreading a message of incurable optimism through his music  and has released an album to raise awareness and money for the Motor Neurone Disease Association who are doing amazing things researching MND with the aim of finding a cure. My Dad was an amazing person who I am so grateful to have had in my life and my family and I miss him more than he could ever imagine. So although today is a day of birthday celebrations in my house, it is also a day I remember my Dad, of the battle he fought and of the many others out there today battling against Motor Neurone Disease.

 I hope this blog has raised awareness to a few more people about Motor Neurone Disease, you can find more information or make a donation on the MNDA website here  and you can follow Alistair the Optimist on facebook here. 

Please help us to raise awareness and fight back against Motor Neurone Disease - together we will beat it!
.