By Leicester Mercury | Posted: 05 September, 2015
I was diagnosed with Motor Neurone Disease (MND) four years ago. At the time I hadn't even heard of it, so I went on Google which, in hindsight was probably the worst thing I could do, as the top results that came up were the worst case scenarios.
I used to be a scaffolder and I started to feel a weakness in my arms, but it was 18 months before I was diagnosed.
I was just 43 at the time and I had two children.
To be told I had MND was a shock, to say the least.
I've now lost the use of my arms and I had to give up my job.
Over the past four years everything has changed, everything.
I can't feed myself and I can't drive. You don't realise how much you can't do without the use your arms.
It's the little things that you used to take for granted, like scratching your nose.
Even when I go to the pub with my mates I have to ask them to get me a straw so I can drink my pint.
My wife has become my full-time carer and she now does everything I used to do.
At the moment, I can still walk and I know that's rare for people who have had MND for four years.
I suppose in some ways I'm one of the lucky ones because I'm not in a wheelchair yet. Recently, though, I've started to feel my legs twitching but I don't really like to think about that. I try to stay positive.
The hardest bit for me is the kids – my boys, Fraser, who is six and Jack, who is three. I can't play with them how I used to.
I try to go to Fraser's football matches, so I can still be involved that way.
I started coming to LOROS around three-and-a-half years ago.
I didn't want to go, I thought people only came to LOROS for one thing and one thing only, but actually, there's so much more to it than that. LOROS has been absolutely brilliant.
Dad brings me in, he's become my regular taxi driver since I was diagnosed but I don't think he minds much, in fact I think he enjoys coming to LOROS anyway.
We come here for a laugh really, all the nurses call us a pair of jokers. And coming to LOROS gets me out the house.
I don't get out the house very often, so coming to LOROS is good for me.
I have regular physiotherapy and complementary therapy sessions, such as massages and acupuncture.
It helps loosen my joints and muscles, so I can go home feeling relaxed.
I also receive regular visits from the LOROS community specialist nurses, who come to see me at home.
They're fantastic. They helped me understand my illness when I was first diagnosed and, ever since, they've gone above and beyond to help me.
The best bit is I know that they are only on the other end of the phone if I ever need anything.
LOROS offers so much more than I thought it did. People should come and see for themselves because the support and help they have given me has been invaluable.
