Motor Neurone Together We Stand

We who have MND have questions that only others with it can understand. So share on this sight you insights and understanding, you friendship and encouragement. Together we Stand!

I am a single Mum of 3 lovely boys who has been extremely active during my life - ballet, running/jogging, cycling and generally running around after my 3 healthy boys. Then after a nasty fall in Summer 2009, were I smashed my wrist on restarting activities I found myself generally stiff and physically things were hard work. Then in February 2010 I went to my doctor because I had walked up a slight incline and it felt like I had had a stroke in my left thigh! Thats when I started a year long round of consultants, hospitals and different thing being checked and nothing being found wrong. Perhaps I needed a psychiatrist?!

Then on March 14th 2011 I was told by my consultant Dr Ralph Gregory that I had Motor Neurone Disease!!! Well I left his room in totally unaware of what I was going to do. I was meant to be going to work so I rang and told them I would bot be in. My head was spinning !

I told my parents when I got home - they live in an annexe attached to my house. Not sure it went in, but that is understandable who wants to see there children leave this world before they do?
My boyfriend was working a couple of hours away from home and had contacted me to ask how it all went with the consultant.... I did not want to tell him but he insisted. I was so worried about how he would be on the long drive home.

Then the hardest thing was telling my children. My eldest I told at the weekend when he was home from University and his girlfriend was with him. He broke down into tears it was horrendousMy younger two I left until after I had been in hospital for an overnight stay and and lumber puncture (more about that horror another time). When I told them there was a little less understanding being 15 & 9 then the reaction was different. The 15 year old checked it out on the internet - followed by worry etc. The younger one went out to play with his friends. He now has the a kids book explaining all a child aged 6-10's understanding. I recommend this very much but be nearby while they read it. I have left it on the coffee table for his perusal at anytime.

So from there in I told everyone, starting my news with "are you Ok? Now don't be too worried about what I am going to tell you" . It is I feel a shock that you experience again and again as you tell people, I was feeling so sorry for everyone as I told them!
Everybody reacts differently - tears, questions, not understanding,unable to look at you, stunned, hugged, consoled. All different but all real.

So now it is 26th May 2011.
Today I can do everything but as of the last 12 months I need a stick to walk/balance, I don't walk very far and use my car and blue badge - thats like gold dust now.
My hands, arms, lungs, neck, speech are as they always were. What I don't have is the ability to take my heels or my toes off the floor, maintain balance for very long, reflex my ankles or toes. This is how I have been for more than a year now.....the journey begins I'll keep you posted. Please feel free to do likewise.

28th August 2011- ps dont be sad for me cus I am having a blast !!!!! Life is for living so Live xx