MND: Six Months On

It's hard to believe it's been six months since my diagnosis of motor neurone disease. The last six months have been extremely challenging, emotional, and tougher than I could ever have imagined. However it has taught me a lot about life, about family, about friendships and most of all who is there for you and sadly, who isn't. Never in my wildest fears did I ever think I would be facing a terminal illness, some days it freezes me in fear but other days it has given me a fire in my belly that has pushed me to do new things, old things and to live every single day to the full.


The last six months have allowed me to live life and to do all that I can. As my body weakens, I have tried to not let things get in my way. It has been an education for us all about the challenges that lay ahead but a time to enjoy and savour the here and now. We're all guilty of being on the treadmill of life every day and it's not always easy to take stock of what we have achieved, the people who are around us and what we want to achieve from life. As you will have seen from my bucket list, I have been doing lots in helping to take things off my list, I do have a lot of people to thank for making things possible, for giving me and my family the opportunities that have enabled us to spend time as a family. I still have lots yet to accomplish and I will not let anything stop me.


For those that have been following following me on my Instagram journey, you will have seen that from diagnosis I wanted to raise as much as possible for the MND Association. So with that in mind, and along with the help of a friend, we set to work in putting together a fund-raising gala to raise as much as humanly possible for the association. They receive very little funding and therefore I felt it was my mission to raise thousands of pounds to help support those that live with MND and to those who support those. The gala was an outstanding success and thanks to the generosity and support from those that attended, we managed to raise more than £12,000 for the MND association. My fundraising does not end there and this is just the very start of my fundraising journey. I feel extremely honoured that others are fundraising in their own way on my behalf and again thank you will never be enough.


Life with little man, we have tried to keep as normal as possible. However he does see changes in me, he has seen me fall over and also notices changes in how I walk and keep mobile. It will soon be time to share with him more about my illness and what this means, and the changes that he will see. I am worried about the effect this will have on him, but I know that he will adapt and want to help as much as possible. However one thing I don't want, it's for him to see me deteriorate at the very end. Like others around me, nobody deserves to see that.


It's hard to see the changes that occur with MND and how this looks day today. As it is a progressive disease, it is only over time and when looking back that I see the changes that have happened. I still do not look far ahead in life, I tend to look at the day ahead for the next few days. It keeps me in the here and now rather than possibly worrying about what I may or may not be like at a later date. MND has given me many opportunities that I never imagined, or even wanted in my life. However it has enabled me to focus my mind on doing all I can for the MND Association and it keeps me going when the shit days come my way. There is lots yet to come and I look forward to being able to continue the conversation and to make it a normal conversation to talk about the illness.


So yes a lot has changed in the last six months, but also I've lived a lot in that time too. I continue to work full-time, to be a husband, to be a father, son, brother, friend and everything else! Some days I find extremely tough when my energy is low and I have found and learnt that I have to be kind to myself on those days. So whilst my body continues to change, I will not let it change who I am as a person and what I am yet to achieve from life. With the recent passing of Queen Elizabeth II it has made me reflect on my own mortality and in some ways it has made me mourn the loss of things that I can no longer do end of things that I struggle to do or need help with. It is only when you can't do something you then realise just how precious your life is and how we all take for granted the simple things in life.


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