But one of the hardest questions I’ve ever been asked, [son] was 11 and he just point blank sat – I was in the car, we were parked up – and he said, “Did you know when you had me that you were going to give me something that I was going to die of?” And I remember sitting there just frozen, thinking, “How on earth do I answer this question?” And I honestly said, “[son], I didn’t know.” And thankfully I didn’t know. At the time that I had my, I had my children I didn’t know for definite that it was. But I wouldn’t have not had them. And I had to explain to him that it didn’t make any difference, and hopefully he won’t have to develop MND, and one day the cure will – hopefully in their lifetime – I don’t think it’s going to happen in mine but I’ve got every faith that, for them, that things will be different. And that’s the one thing that I can keep telling them.

So would you, I think you said you, you would have had children anyway, even if you had known there was a family?

No. I think had I known, I would have chosen not to have children. But then that’s an easy assumption to make when you’ve already got them. So, and I wouldn’t be without them now. They keep me going. They’re a reason to be here. So I’ve got a lot to be thankful for. But I really don’t think I would have gone ahead had I known for definite that this was going to happen.

But I’m also aware that I’ve got to be as positive as I can, because I want the children to have positive memories of MND, not the negative one that I had originally. Because God forbid if one day one of them develops it, I don’t want them to then think, “My life’s over.” I want them to remember that I’ve abseiled off a building with MND, I’ve met Cliff Richard with MND. I’ve done a lot of things that I would never have done previously. I’ve done the Great North Run. And I’ve tried to let – and we have a laugh. I try and – it’s the most important thing that life goes on, it’s not the end of the world, and try and give them as positive an outlook as I can.

And then round about 1997 I started having problems with my legs feeling heavy, and by the time I finished work, walking home was a real effort. And at night I had muscle cramps and twitchings. And I was running for the bus one day with the children and my, both knees gave way. And I suddenly started thinking, “This, is it not like the symptoms my sister described?” And I remember phoning her husband up and having a chat to him. And he said, “If it is motor neurone disease, you know better than anybody that you need to know sooner rather than later.”

So I went along to my GP, who was wonderful. And he straight away said he didn’t think it was, but given the family history he would refer me to a neurologist, who would put my mind at rest. Six months later I went to a neurologist, who said the same as my GP, “I don’t think its motor neurone disease, because you’re not describing any muscle weakness as such.” But he ordered EMG tests. And when I had the tests a letter came that I had to go back to the hospital, and I knew then that it wasn’t good news. He told me it was motor neurone disease and he was very sorry, but he would refer me to another neurologist, who would do another check. So I was referred straight away and she, my neurologist confirmed again that it was motor neurone disease. And I remember saying to her, “It’s not. If I hadn’t have told you my family history you would have done more tests. You’re not looking for anything else.” And, but unfortunately I think I just wanted it to be anything else other than motor neurone disease. Having been a carer, I already knew too much. So, and the initial reaction was that I would have eighteen months and then that would be it. And that was, every other member of my family has gone in such a short time.

And the hardest thing, I think, was telling the children. Because if it’s not in the family you can choose how much information you give out to your family. But because my children had already seen their auntie [name] in a wheelchair and subsequently die, as soon as I told them I had motor neurone disease they knew what it was. And their initial reaction was, “That’s what auntie [name] died of.” And there was a few tears, and I promised them that I would fight it, it wouldn’t be the end. And so far I’ve managed to try and keep going and feel a positive attitude. But it is hard when you already know what’s coming.