40 Year old shares his Muscular Dystrophy and Living Well Story

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Female nurse talking to a male, sitting in a wheelchair

Piers Turner, aged 40 years old, visits our Living Well Service and kindly shared more about his condition and experience with the Charity.

Can you tell us about your condition?

I’ve been diagnosed with Muscular Dystrophy all my life. My dad got diagnosed just before me. He could grab hold of a big sack of potatoes, the old-school paper bags, he could throw one of them over his shoulder and he could carry my sister upstairs but with his Muscular Dystrophy, it progressed. Then the muscular dystrophy started to work its toll and then obviously he couldn’t do these certain things.

Whereas with me, they noticed when I started to crawl that I was moving, totally different to everyone else. I wasn’t strong, you know.

Muscular Dystrophy means I’ve got heart failure – everyone seems to forget, Muscular Dystrophy is a muscle and your heart is a muscle. So, basically, I’ve always had a irregular heart beat. So, they’ve always kept an eye on that.

At a check up they saw, an arrhythmia which is a tiny little glimpse -this is when I had my normal pacemaker. They came to see me and that’s when they sat there and said right, we’ve seen this tiny little thing but we want you to have this other pacemaker that’s got a defibrillator in it so an Implantable Cardioverter-Defibrillator (ICD) was fitted.

Then funnily enough, what happened to me was I had a this real bad storm and the arrhythmia was the storm and the ICD obviously went off. It went off seven times, six in a row near enough. So, one time it hit me and then I was just like oh, like that, it put me to the floor and then I got up and managed to get to the machine to download myself and then I had another arrhythmia attack and another one and another one.

That’s when they found out that I had five types of Muscular Dystrophy! They’re intrigued in me. I’m a doctor’s nightmare because they can sit there and control one Muscular Dystrophy but the other one fights it so then as soon as they can control two, number three would play up or if they do number four, five would play up, if you see what I’m saying. So, I’m literally a rare, rare, rare breed of Muscular Dystrophy.

I’ve been a guinea pig all my life. it’s never really bothered me but when I was in hospital with my long stint of being in hospital, it started to get to the point of, ‘can you just leave me alone?’

What do you enjoy about the Living Well Service Sessions?

It puts me in a better mood. It teaches you how to manage, you know, obviously your physical and your mental health and trying to not wear yourself out during the days and things like that.

I have learnt breathing techniques for when you go into a panic mode. I wouldn’t say that I sit there and get shortness of breath but sometimes I get panicky and then obviously that causes you shortness of breath. Teaching you techniques of how to manage yourself and that’s what I’m talking about and it’s all about managing yourself and how to control certain things to make your day last and you to last longer.

How did you feel about coming to the Living Well Service Sessions?

At home I started to slack. My mum was just like, come on Piers, stop being lazy. I thought I can’t do it anymore. It wasn’t until I came to Living Well and it was just like, so it’s not me! It’s my actual condition what I’ve actually got that’s making me be like this, so that’s the reason why I said it’s a mental eye-opener because you don’t realise until you’ve got other people in a similar position to talk to as well. So, they might not have the same condition as you but the thing is their mental side is the same and the physical side – they get shortness of breath and have panic attacks too. So learning all the bits and bobs helps to manage your whole day.

Tell me about your Canvas you painted

Male sitting in a wheelchair holding a small canvas

Canvas painting of a tin can
The Canvas Piers painted for the Hospice

I always sit there and say ‘the green-eyed monster’ because at first you don’t know what’s going on with you. Then you start to realise, [learning from the course]. So, a bit like being a kid again. So, you know, there’s the green-eyed monster underneath. So you’re always scared to put your feet down but, you know, coming to this place, you don’t mind. You put your feet down because you understand the problems.

It’s all a part of your mental wellbeing because basically, if your mind’s not there, your body’s not there. If your body’s tired, your mind’s tired. It’s all a big build-up.

If your body’s tired and your mind’s fit, that’s basically because you’ve done too much with your body, where if your mind’s tired and your body’s fit, you’ve done too much with your mind. So it’s all about that balance, you know, trying to correspond with one or the other and that’s the reason why I was like yeah, it’s a mental eye-opener.

This is the best thing about this place because just because you haven’t got the same condition as another patient, they can give you life hacks ad where you can sit there and learn off them and they can learn off you. So you just take bits out of different situations and then it’s so much easier to process.

What helps me might not help someone else but it’s all about taking them little jigsaw bits and putting them into perspective for you. That’s the reason why I like coming to Living Well because it’s taught me so much, it’s unbelievable.

What would you say to someone else who is thinking about coming to Living Well?

If anyone sat there and said ‘I’ve got to go and do this Living Well course’, to be quite honest, I’d sit there and say ‘Just go because you’ll learn a hell of a lot and it’s not just members of staff that are friendly, it’s the other people as well.” Like I sat there and said to Katie before, ‘it’s like having a little family that understands you.’

The Charity also has a range of Supportive Wellbeing videos, which available to anyone, via our website: arhc.org.uk//supportive-wellbeing-videos. These include video about relaxation and coping with breathlessness. 

Our ‘Outstanding’ services are provided free of charge to patients and their families. Our aim being to provide the highest quality care, helping people to make every moment count. You can find out more about how we are funded here: arhc.org.uk/how-we-are-funded.