Firstly I am someone who likes to know and understand things. If I get an interest in something I will either get a book on it or look things up on line. I am also a great believer in talking about things and not bottling things up. I am sure I talk way too much sometimes and I am pretty sure my family would agree with that, but that is just who I am. (Though when meeting new people I am pretty shy.)
When Chris was first diagnosed we felt very alone even though very quickly he seemed to have this wonderful medical team appear around him. Still we felt scared and we were devastated. I had read up online about MND, so I knew what was going to be in store for Chris and I was scared. I did know a little about MND before Chris's diagnosis though. The first time I had heard about it was in my teens I think when David Niven was diagnosed with it. I remember then thinking MND seemed the most scariest disease ever. Everyone has heard of Steven Hawking of course, but the only other time I had ever heard of it was when some one was on the news, in the later stages of MND, wanting the laws changed on assisted suicide. I had never seen or read anything about what actually living with MND was like. More recently a friend of mine in the US had told me about Jason Becker, the rock guitarist who was diagnosed aged 19 and is still alive today in his 40's and I watched the documentary about him. It was because of Jason Becker that I guessed Chris had MND as he had similar symptoms to him.
I decided quite quickly that I wanted to keep a record of all the things that were going to happen to Chris, as macabre as it may sound, I didn't want to forget a thing. I have never been able to keep a diary before, unlike Chris who has kept one since he was a child, so I thought I would write a blog instead. I had no intentions of deliberately sharing it, in fact the first few blogs were written as anonymously as I could make them and I kept them private, they really were just for me. It was a kind of therapy for me to to get my thoughts and fears written down as well as logging the progress with Chris.
I use Twitter and Facebook and I started following the Motor Neurone Disease association on Twitter. Of course this generated like minded people to follow me and this was the beginning of finding our wonderful MND family. One day I decided to share my blog on Twitter, on a whim and people started reading it. It also coincided with MND awareness month so I guess sharing it just grew from there. I also realised that I needed, yes needed, everyone to know what this damn disease does to people, how vile and cruel it is and how we desperately need a cure. I hope along the way that I have helped a little in raising the awareness of MND too.
I am very humbled at the positive response I have had since sharing it and knowing that in someway it has helped other others in a similar position is very rewarding.
There are many wonderful other blogs out there written by those who have MND, but my blog has only ever been written from my own personal perspective, as a wife and carer of someone with MND. I promised myself I would keep writing it no matter how tough it gets and that I will always be honest and that is a promise to myself I will keep.
Thank you to those that have read it and shared it, love and best wishes to you all.
We fight this damn disease together.
