Billy Reilly’s story

My favourite activity would be the art, definitely, 100%. You can spend two hours in there and you think you are only there 10 minutes. Definitely the art, I find it very good, now I have never thought I’d be able to draw a match stick man never mind anything. But you just actually, it just settles you, it’s like a calmness. It really is. Anxiety is a big thing with Motor Neurone Disease, you get a lot of anxiety, but when I’m in there everything just sort of slows down, it’s really nice.

What I have is Motor Neurones, MND as most people know it by. It’s basically a muscle deterioration, you lose your strength, you muscles, your power, it affects all your muscles. It affects people in different areas first. Some people starts upper body, some people starts in their voice. Mine started lower down in my feet, my legs. That’s basically it. It’s a muscle thing, your muscles basically just turn off the switch from the brain, just stops the muscles working. There wasn’t a lot they can do in hospital for motor neurones, you know what I mean, it’s just unfortunate they can’t do a whole lot, so what I found was they got in contact with the palliative care. So they used to come out to the house so if I was feeling bad, I got really sick over one of the Christmases so they were able to give me pain killer pumps and injections. It was actually Margaret that suggested about coming in here one day, more so to give, to get you a change of routine, to give Sharon a break, my wife as well, to give me a break from the house.

Yeah, when they said palliative care, straight away you think, that’s it. I was a little bit wary at first but I said I’m going to give it a go just to see. I come in on a Monday and the first thing they’ll do, the nurse, we all have our own certain nurses you know, they will come over and they’ll have a chat with you, and they’ll find out what your week was like, do you need anything. If you had to, say I had an appointment in the hospital, how did that go, what came out of it, what good came out of it, what bad came out of it. Medication, I find them brilliant because they know the disease inside out and they know okay you might need a little bit of this being upped or downed. It stops you having to go into hospital every time you need to change something.

They arranged a day out for myself and my family for the zoo. There’s always people coming in to greet and meet. They hold the Christmas parties, they do great things like, they organised if you want a massage, therapy and stuff like that. There’s relaxation sessions, there’s mass, if want to go to mass, you don’t have to, you know they basically will just do anything, you know, in their power that they can.