‘I’d look at Kathy, she’d look at me,

CHRISTMAS 2016

There is no nice way of telling someone they have Motor Neuron Disease.

But in my experience, there are not-so-nice ways of delivering bad news. The way the prognosis was delivered, I found cold.

I asked what the timescale was. I thought, maybe he’s just as upset; maybe my question will break the ice. Maybe he will reel off a list of dos and don’ts; maybe he’ll tell me to try walking, try swimming, try drinking, eating; maybe he’ll tell me don’t drink, don’t eat certain things. Instead, he replied, with some confidence, that I wouldn’t be walking in here a year from now.

More than 18 months on, we’re well past that deadline.

And I’m still walking, talking and living life to the full, although holding pint glasses and doing up ties and buttons is proving very difficult.

And I was still walking last Christmas, and that consultant said I wouldn’t be. I win that one.

All this comes when your brain is still in meltdown, running through scenarios like the fastest computer in the world: Kathy, three boys, farm, mortgage, car lease, business, just how long do I have, mum, dad, family, employees, lambing, rugby friends.

I look at Kathy. All she does is stare. I think we were frightened to look at each other at the same time.

Riluzole is the only drug available in this country for the treatment of MND, and it was introduced more than 20 years ago. Surely there should be something else out there?

My desperation, my need for answers, was the planting of the seed of what I would try to do, for me and for fellow MND sufferers. Waiting for the inevitable just wasn’t an option.

We needed to get things up and running, get some movement. That would take time I might not have. But, when you are desperate, it’s amazing how quickly you can move.

A lot of the time since my diagnosis, I have been able to