I took the ice bucket challenge ...then got the disease it helped
When I did the ice bucket challenge in summer 2014, I knew very little about the condition it was raising money for. Like most people who did it, I just wanted to do something nice for charity. I didn’t give motor neurone disease much thought.
Little did I know that I would soon become all too familiar with this dreadful, incurable illness.
That December, I experienced some weakness in my hand and wrist. I started to drop things – but there was no pain, so I carried on. I’m a fitness instructor so assumed I’d overdone it on the weights.
Yet, over the next few months, my symptoms worsened. At first, I wondered if I had a trapped nerve but I became concerned when I started to lose my balance.
But it wasn’t until April last year that alarm bells really started to sound. I was in my living room at home in Stafford when my feet suddenly went from under me and I badly bruised my leg.
Sensing something wasn’t right, I made a GP appointment. By then, I’d started to slur my speech, too. The doctor thought I’d had a mini stroke and sent me for tests.
As a busy single mum to eight-year-old Harry, I wondered how we’d manage. When I was signed off work for three months, I knew it was really serious and I braced myself for what was to come. But after lots of examinations, doctors told me they didn’t think I’d had a stroke after all.
They were testing me for a variety of neurological conditions. So I started to research my symptoms – and I realised I might have motor neurone disease.
It was terrifying when I read how it is caused by the specialist nerve cells in the brain and spinal cord – known as motor neurones – starting to degenerate. This causes muscle wasting, which then leads to Six people are diagnosed with motor neurone disease every day in the UK – and a further six die of it. It affects up to 5,000 adults at any one time. Visit to find out more.
difficulties with walking, talking, swallowing and breathing. You become locked in a failing body.
Worst of all, there is no cure. The vast majority of sufferers die within a few years. Some rare exceptions, such as Professor Stephen Hawking, live longer.
Symptoms include a weakened grip, slurred speech and difficulty walking – all things I’d experienced.
It might sound strange, but when I was finally diagnosed last July, I didn’t break down or cry. My dad came along to support me but I was gripped by an overwhelming feeling that I just had to make the best of a terrible situation. I’ve always been a strong person and think everything happens for a reason.
It was several months before I told any of my friends. I didn’t see the point in moaning to them as I didn’t think it would change anything. They were really supportive when I finally told them last October.
Since then, my symptoms have got worse. Now I find speaking very difficult and sometimes have to use a wheelchair, as I struggle to walk long distances.
But instead of dwelling on the negatives, I’ve thrown myself into finding a cure. So far, with the help of family and friends, I’ve raised £9,000 for the MND Association. They have been amazing and deserve every penny.
Harry has been fantastic. We just take each day at a time. I haven’t explained exactly what is wrong with me as I don’t want to frighten him but he knows I can’t do some things I used to and he always wants to help around the house.
I try not to think about our future or my symptoms progressing. It’s too painful.
I want to see Harry grow up, so I can’t give up on my dream of a cure. I have to keep believing researchers will find one before it’s too late. There’s no other option.