James, a bodybuilder, stands in front of a graffiti covered wall

“It doesn’t need to control you” – Dystonia Awareness Week

James Sutliff is a Personal Trainer and Disability Specialist who has a rare neurological disorder known as dystonia. To mark Dystonia Awareness Week, James talks to us about coming to terms with dystonia and how fitness has helped him focus on moving forwards.

It happened in 2008, pretty much overnight. It was bank holiday Monday, I’d gone to bed as normal and woke up feeling unwell. I felt a bit sick, so I went back to bed and when I woke up my speech was slurred. It worried me but I left it for a bit. I didn’t go to hospital straight away.

When I did go to the hospital they admitted me straight away. Initially, they thought I might have had a stroke but that wasn’t the case. I was in hospital for quite a few days before they discharged me. They couldn’t really find anything, a cause or contributing factor. For a few months I was being seen by a specialist. Then my hands started deteriorating.

So they transferred me to specialists in London who were supposed to be the top guys in neurological conditions. So we went and I did lots of tests and they came to the diagnosis that I have a form of dystonia. We did some research, found out a bit about it.

All this took place over two years. It was very frustrating, there were no answers as to why I was suddenly this way and that meant no treatment. I thought it might just go away, and the doctors did, but that hasn’t been the case.

James, a young bodybuilder with dystonia, smiles at the camera

The condition hasn’t got any worse. It’s just not got any better. I think I manage it better now, but at the start I found it very difficult to come to terms with it.

It’s hard to comprehend because physically to look at me, my disability is quite silent. I don’t generally look like a ‘disabled person’. I’m not in a wheelchair; I don’t have a missing limb. So people are often shocked. They think I’m taking the piss.

Using fitness as a focus

I had always kept in shape through rugby. I really found a focus with fitness. That’s what keeps me healthy – mentally and physically strong. I still do find it hard sometimes. But fitness has helped me to come to terms with dystonia. If I look good and I feel good I forget that I have dystonia.

I’m really passionate about fitness and I came across a scheme called Instructability which is aimed at people with disabilities who’d like to work in the fitness industry and help to train and rehabilitate people who also have disabilities.

Because of the situation and what happened to me, I want to help people who have disabilities and help them through fitness. Fitness has helped me to fight against my condition. It makes me feel better, look better and with that, sometimes when I’m training I forget I have a disability.

James, a bodybuilder, lifts weights in a gym

Dystonia and the future

It doesn’t need to control you. You can manage it and it’s just about finding the way to do that. Don’t let it stop you from doing anything. I’m not going to lay there feeling sorry for myself. I’m going to do something.

Dystonia does have an impact on things and it does make life a little bit difficult but I won’t let it beat me. If you let it beat you, it makes it worse.

Visit James’ Facebook page for brilliant training, dieting and day to day living tips. Scope’s online community also has a number of tips around fitness. Visit our community today and get involved.

One thought on ““It doesn’t need to control you” – Dystonia Awareness Week”

  1. This is so inspiring and although I have got Parkinson’s and Dystonia, I can relate to everything you say. I do hydrotherapy twice weekly and walk everyday. I fractured my hip last year and my recovery has been slow but I won’t give up! You are such an inspiration! Keep on doing what you are doing!

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