It’s just the most wonderful thing that against all the odds there was his dad at his 8th birthday party, seven years on from the diagnosis of MND, his dad was there at his 8th birthday party and that’s just wonderful and that’s all thanks to tracheostomy.

He doesn’t want to die. He fights to live to see our children achieve their milestones. Since he’s been diagnosed, in fact since he had his trachy, he’s seen his son graduate. He’s seen his daughter, our daughter get married, now she’s expecting our first grandchild next month, so it’s all very exciting times. And so he fights to live.

Keeping him alive, it wouldn’t happen. He went into hospital like I said to you after two years and he was put in a corner. They weren’t even going to move him onto ITU because he was an MND patient and the benefits for me are he’s still alive, forget about everything else, what I’ve had to do and yeah, I know my body’s a bit shot at and things like that, I’ve still got my husband and I’ve still got a very positive man. Where there’s not too many people like that, but the ones that are have got to be given that choice. He’s here, he loves his garden, he loves his surroundings, he loves going for a walk, he loves his grandchildren which he wouldn’t have had, just seeing all that is enough for me to know it’s all worthwhile – but not for everyone.

He’s able to communicate, he leads a “normal” life because he’s able to breathe properly without worrying or without struggling to breathe basically. That’s a big issue for MND, is the ability to breathe and so he’s able to breathe obviously with the ventilator, 24-hour ventilation and he’s able to do that, so there’s no worry there. His situation is managed well with medication and suction and physio, so it has made a big difference in his life.

We still have secretion problems. You can call it juicy mouth, you know, it just pours from his mouth, it leaks under the trachy. But, I don’t know, I think I just feel we have a bit more control now, we can do something about it; whereas, before, when he was choking on his own saliva, he used to lean over the bathroom sink and he just didn’t have the cough to bring it up, so you feel this sense of helplessness. There’s nothing you can do for him. Whereas now, there’s Cough Assist, we can nebulise, I can suction.

I felt more confident as in if he was eating and something happened that we could suction right away. Because my fear was he could come home with a nasal vent, we could run into similar problems, and I know choking is a massive thing with MND patients and that’s not a very nice way to, you know, end up. My fear was what if he starts choking again and we can’t do anything with the nasal vent, I don’t want to be left in a position where I’m dealing with somebody who’s got a blocked airway. But I felt a bit more confident, you know, with the tracheostomy.

And in comfort, he’s not in discomfort and that’s the important thing to remember. If you see, and you speak to a lot of people who’ve got MND, the journey between diagnosis and the final moments can be quite traumatic because you have the NIV, the NIV causes all sorts of sores around their face, around their noses, etc. He hasn’t got that, he’s not in discomfort at all.

I think the biggest thing is recognising life is more complicated with trachy than on the Nippy (NIV), but then I think it might well come up in interviews lots of people struggle with vent and masks and hate having this thing on their nose. Now that, I had no problem, which I thought might have been down to my having enjoyed scuba-diving, so I was used to it.