Another way that MND defines me is in the way that other people treat me. Few get it right, they hold your hand, look into your eyes and say, “How are you Patrick, how are you really?”, or they are overly helpful, hovering around trying to do everything for me. I know they do it because they care, because they love me, but it is depressing being smothered. Also, going to the toilet in other peoples houses is difficult, involving lots of people helping me, supporting me. I do have a condom catheter thing but I haven’t got used to it yet, and I tend to spend much of the evening worrying about going to the loo. Yesterday it all got too much, and I asked Kathy to cancel the wheelchair taxi. She would go alone with the kids.

At first I was relieved, then, a bit later, I saw that Kathy was upset that I wasn’t coming. I realised that MND had beaten me, and that if I didn’t go, I was giving up. So I went. The party was great, they treated me entirely normally, as I should have known they would, and they moved the fridge so I could get to the loo.

And then, the next day, Kathy’s mum died.

What hope of light is there in this darkness?

My only comfort is this. As I sit there cold in my wheelchair at the funeral, my breath in clouds before me, amongst a black clad group of Kath’s family, stood sombre in the snow, there are brilliant scientists in warm laboratories across the world working hard to beat not only MND, but Alzheimer’s too – the disease Kathy’s mum had. Over the vast landscape of Arizona, someone jumps from a plane, skydiving to raise money for research. As the parachute opens, a man in Paris staggers to a halt, smiling, gasping, his marathon run – more euro’s for the cause. And as the runner drinks from his bottle, my neurologist in Oxford hits someone’s knee with a little rubber hammer, measuring, caring, helping. He looks up at his patient and smiles, and at the same moment, in the frozen churchyard in Somerset Kathy looks down at me with tears in her eyes. I squeeze her hand with what little grip I have. Today I am caring for Kathy, but normally she cares for me, and she is the most thoughtful, caring person in the world.

There is much that is bleak here, but there is much that is good also. There are people out there fighting to stop MND and there are people caring for those that have it. The system is not perfect, but we have made a start, and I take comfort in that.