Welcome to my blog

As I lose the power of my physical voice, it seems appropriate to begin this journal with the help of my eye gaze computer. The power of words can be just as impactful written down as they are spoken, but the debate is whether my words are impactful!

It has been nearly two years since I was diagnosed and the change in my body is there for all to see but the changes I face internally are not so easy to gauge. Like my body, the mental challenge I have changes regularly and I’m constantly wrestling with many emotions, all with the help of my incredible wife. Sport has certainly helped with the mental challenge but not all aspects, for example I have a level of determination that helps me overcome some hurdles I face (figuratively!) however the emotional toll of feeling my body deteriorate requires far more strength than any sporting experience can teach me. 

To face these mental challenges I try to put my energy in to the things that are most important to me. My wife and children are the most important thing to me, which is stating the obvious, but for so long before I was diagnosed with MND, work was a close second and that meant I missed out on valuable time with them but it is one of the gifts this situation has now afforded me. The other has been travel, although that has sadly declined with my body. I knew from the advice of the great Doddie Weir, "use it before you lose it", that I had to make the most of the early days of diagnosis which is why we decided to fly out to Australia two months after I was diagnosed. Australia is a country that means a huge amount to me, it is where I spent my formative adult years, initially travelling with my close friend Joe Gorman I flew out there aged 18 to play some rugby and get a job. We ended up in Sydney like so many backpackers and settled in the Eastern Suburbs of the city, home of the famous Bondi beach. We were definitely the typical cliche of English teenagers taking a gap year, we stayed there for eight months and had a brilliant time but we both had to come back to study. Joe went off to Brighton University and I disappeared up to Lincoln to study a degree in Journalism, but I didn't last long and within three months I was back living in Sydney, this time alone. I stayed in Sydney for three years in total and made some life long friends and this was why I chose to take my family over there, so I could show them the amazing country as well as meeting up with lots of important friends that I hadn't seen for a long time. I am sure I will write more about my time in Australia but for now I will come back to the present day!

After receiving so much help and support from friends, the rugby community and many other people, I am determined to help other people living with MND through the 4Ed campaign and that is an important place I want to focus on. It can be a scary, lonely and isolating diagnosis to receive, particularly without a support network that I have been fortunate to have. On top of that it is an incredibly expensive situation to navigate because often the ability to earn an income disappear almost overnight, then you have to consider adapting your home in a race against your declining body, all whilst navigating the impact this is having on your family and friends and pondering whether you might be one of the 50% that dies within two years of diagnosis.