The reason behind running

Ultra Tour of the Peak district completed in August, the Thames Trot (oxford to henley) in feb

So I wanted to put people in the picture about my dad and his side of the family and how we have all been affected and possibly effected by a terrible illness. The gene for the illness was only recognised in the 1900's and testing became available to those that wanted it.

As I've mentioned before my dad has Huntington's disease which is a hereditary illness that has a 50% chance of being passed on through the blood line of a family, my gran (dads mum) was our carrier originally probably having early signs of this illness when my dad was born, but back then she was thought to have Parkinson's, she died when my dad was in his teens and prevented him from following his dream of being a sports teacher or doing something along those lines. My dad is the youngest of 6 children and only has 1 sister left that is in good health but the others have all passed away from this dreaded illness.

The other reason for the blog was to document the decline in my fathers mental and physical state over the past 20 years, I know that some of it comes with age, but the things I have seen over the past years his ageing process has been accelerated massively.

My dad the sportsman. Over the years my dad played a lot of sport and other activities at various levels, from being a surf life saver in his teens and twenties to playing football for Cornwall as well as playing for several local clubs and managing some, even managed a good winning youth squad before he retired. In his later years from late 30's through to 50 he played cricket for the local cricket team and opened the batting for the second team and bowled as well.
Whilst in his late 40's he could still run around and play 5 a side football with people half his age and compete on an even playing field with them.

My dad has always had this illness in his system with some people it develops in their 20's and 30's others like my dad, it starts in their late 40's. I can't put a finger on when it actually happened that he was diagnosed but it was around 1996, so I want to write about the last 15 years really.

After diagnosis my dad continued with normal life playing sport and being as physically active as he has always been, but in early 2000 or so, could see that there were things that weren't quite right and that he was starting to struggle and not compete in activities like he had always done, for instance his reactions at cricket started to get slower and he was getting hit by the ball because he couldn't get out of the way, which he previously could without any trouble.

Up until our wedding in 2003 Dad continued to walk a lot with the dog at home and managed to travel up to sheffield to visit Liz and myself, but over the past 8 years we have seen dad go from being active to the situation he is in now.

I'm going to be blunt about this because sometimes it is easier to do so, I saw my Dad every 3-4 months mainly in the bigger holidays and the shock of seeing the way in which he had deteriorated over time really upset me.

One holiday he would struggle to walk,
next holiday struggle to talk,
Next one forgot how to eat and it go's on from there.
Other times it seems he is in lock down and cannot express any feelings or expressions to anyone

My mum throughout this whole process has been an absolute rock, without her dedication and devotion to my dad, he wouldn't have stayed at home as long as he did.
My dads now in a home that specialises in Huntington's disease. We visited him in September there and to see other people at various stages of the illness were both harrowing and distressing for myself and my brother in particular, to have your dad not recognising both of us was horrible, he still didn't recognise us when I returned to visit in November.
My dad spends large amounts of his time at the moment fidgeting and moving around burning off calories like you'd never believe, sometimes you'd be talking to him and he will just get up and walk away, and because now he is a little unstable on his feel he falls over and hits his head or other parts of the body. When dad was diagnosed he was around 13st but recently his weight has gone down to little over 9st, although he is eating well.

The falling isn't a major issue, but he feels no pain anymore and cannot tell anyone that he is in pain, a very bizarre situation. Due to my dad falling or putting himself on the floor a lot he started wearing knee and elbow pads, just to try and offer some protection to his joints. The next stage for a lot of Huntington sufferers is that they wear a helmet, not a full crash helmet but one that covers the main parts of the head and offer them protection from falling over, dads had one now for a few weeks and has managed to keep it on and doesn't seem to find it uncomfortable. His helmet now has Wolves colours on it as he has supported them all his life and still likes to watch sport on T'V.

Finally the ticking time bomb?

There's not a day and sometimes not an hour that go's by without thinking about this illness and how it could affect Liz, the kids and everyone else that knows me. There are times when you do silly things and you think to yourself god is it today that I'm starting and then you see others do daft things and it brings you back down to earth.

I know the chances of me getting this illness are 50%, people ask me if I would ever find out whether I've got this illness or not, but is there any point finding out its going to happen when's there a life to live and the main thing is to live it to the max and not have the worry that it's going to start at some point, is ignorance bliss? Yes in this case.
At the end of the day I could get knocked over crossing the road or something else in the mean time, I know others who have suffered terrible illnesses and not survived.
The difference between this illness and others is that there is no cure and very little funding to find one,

The race I'm am doing is yes to raise some money to support people who suffer from the illness but also to raise people awareness of a terrible illness that has a horrifying effect on the people it involves.

I am in the process of writing a Blog detailing my training and diet, if you would like to read it then please go to 55mile.tumblr.com