Fun things I hope you never get to experience.

Have you ever tried to put socks on someone with MND when you're 15 minutes late for work and sitting next to a radiator on full blast? I can tell you, it's quite the experience. It feels like you're just about to explode, actually. By the time you get to the point where you're actually putting the socks on, you're already an hour into the process, and the socks just will NOT play ball. Danny and I would end up sitting there for a minute with our eyes closed, trying to focus on our breathing so we don't have a simultaneous nervous breakdown. Basically, because all of the muscle in Danny's feet, ankles, and legs has disappeared, he can't hold his foot in place, so it's an impossible task to get a sock on. It’s like when you try to get your socks on after swimming, but 1,000 times worse.

I honestly have no idea how I used to get us up and dressed, looking relatively sane, and to work by 9 a.m.—9:15 a.m. depending on the level of sock trauma. It really is incredible how little things we used to take for granted become the hardest of tasks.

It's the little things in life, like being able to eat some cottage pie without nearly choking to death, or being able to shout back at your wife (i.e., me) when she’s talking AT you about something you completely disagree with. Danny really struggles with his swallow now, and in fact, was told only yesterday that he should not be eating or drinking because he might die. I mean, it was fairly black and white. But equally, he does really love Haribo Tangfastics, which I can tell you is the least MND-friendly item available. But what else is he meant to do? He can't move, he can't talk; he has to have something to enjoy while I'm talking at him. I would be lying if I said there haven't been some seriously hairy moments with his choking. Just the other day, he almost got taken out by a bit of stuffing. I was looking around the room, trying to find my phone, thinking we’re going to need an ambulance sharpish. After what felt like an eternity, Danny's face changed from blue to red, and we managed to clear the blockage, which resulted in what looks to be a murder scene.

Another fun one: have you ever tried to put a ventilator (life support) on someone with MND and their head keeps dropping down and the straps aren't in the right place? It can be a lot of fun—fun as in, you want to rip both of your eyes out. Danny has a tiny bit of muscle left in his neck, maybe just enough to turn to me and roll his eyes if it's that sort of evening. This means his head will drop down rather aggressively if it's not placed in the right position. So when you're trying to get the masks on for the ventilator, it can be quite a challenge. If you don't get the mask on right, the air will leak from around the edges, and the machine will set off an alarm to tell me Danny might die. Also, if the mask doesn't sit properly around Danny's non-negotiable beard, the air will hit me in the face, and I will feel like I'm in a wind sock while trying to get to sleep. Weirdly, I am so used to the sound of the ventilator now; at one point I hadn't had a night away from Danny in seven years so I just couldn't sleep without the noise of the ventilator. It's comforting to know he is still breathing, obviously.

Sleep? What is that? Night time is the most fun, actually... Danny can't roll from side to side anymore, so he has to be turned. Imagine trying to get comfortable when you just can't move. Fortunately, I know when he needs to be turned. Unfortunately, it's a lot. There's a really fun thing that happens at night time, whereby Danny wakes me up to roll him over, or the bed alarms, or the ventilator alarms. So, I get up and out of bed, and then Reggie (Miniature Schnauzer), of course, wakes up, thinking it's time to get up for a garden security check. Sometimes, it's the other way around; between the two of them, it's an absolute riot between the hours of 11 p.m. and 7 a.m. On a good night, we're all up about four times; on a bad night, it's about ten times. All the while, I am absolutely desperate for sleep, aging by the minute, and thinking about all the things I need to do in the morning.

But this isn't about me and my grey hairs. These points are a mere drop in the ocean compared to all the fun and games we have battling with Motor Neurone Disease, and I honestly hope you never, ever have to experience any of the fun points mentioned above.

Can you actually believe there is no cure for MND? It's wild.