Her fiancé had been struck down by a terrifying illness. But that wasn't going to get in the way of their big day. Sam Sutliff, 29, from Leicester, shares her story.


James Sutliff is my hero. Not just because he’s 6ft of pure muscle, but because he’s a good bloke. And he’s a fighter.

We’d met on a night out in November, 2007. James, 32, worked as a plumber, played rugby for South Leicester RFC, and hit the gym whenever he could.

But we’d been dating just 6 months when James’ mate rang me one morning.

‘James has been taken to hospital,’ she said. ‘They think he might’ve had a stroke.’

The doctors were wrong. James hadn’t had a stroke.

But I could see why they thought it.

His speech was worryingly slurred and he could only get his words out slowly.

‘What happened?’ I asked him, terrified.

‘Woke up like this,’ he muttered.

None of the doctors at Leicester General could discover what was wrong. And, two days later, he was back at home.

Over the next few weeks, James’ speech improved. But he still had to take it slowly.

I decided we needed a holiday. So, that summer, I booked us a week in Cyprus.

And while we were there, we decided to move in together when we got home.

We hoped James would get better in time. But within a year, he’d got worse.

James’ thumbs had started to curl inwards. And soon, his hands were getting stiff.

It meant giving up plumbing and rugby.

He’d started getting this shaking in his hands and arms he couldn’t control.

But the doctors still had no idea what was wrong…

James was determined to get on with things.

He carried on going to the gym, using his hands to lift weights as best he could.

And then…he proposed! Of course, I said yes.

James at the gym

James at the gym

Soon, we were pretty much in overdrive getting the wedding planned.

I had my dress to think about as well as the venue, the flowers, the guest list…

But then, we got a call from the doctor at Leicester General.

James had been transferred to London for more tests.

It’d taken them a while, and he must have had every medical test under the sun.

But finally, we had a diagnosis.

‘James has dystonia,’ the doctor told us.

We’d never heard of it, but the doctor explained it was a neurological condition causing muscle tightness and spasms, and affecting speech.

‘There’s no identifiable cause,’ the doctor went on. ‘And sadly, there’s no cure. We don’t even know if the condition will get any worse in your case. But we can help you live life as best you can.’

James looked at me, and I saw hope in his eyes. Relief.

‘Let’s get on with living,’ he said.

James would have botox injections in his hands and arms every three months, to lessen the tightening of the muscles.

He’d have physio and speech therapy, too.

And the doctors recommended he carry on at the gym.

He didn’t need telling twice!

Before long, he was back to working out just like he’d been doing before.

Cardio, supersets, compound training, high reps…it was hard to keep track!

Soon, he was looking healthier, fitter and more muscular than ever.

There was still a problem though. His speech.

He had days when he sounded clear as a bell, but others when he was slow and a bit slurred.

‘What if I can’t get my words out on the big day?’ he said, worried.

James and I were planning to marry on the beach in Spain.

I checked with the official who’d marry us, and all James needed to say was ‘I do.’

‘I’ve had an idea,’ I said. ‘Instead of saying our vows, let’s do something that symbolizes them instead.’

When our big day came, in September 2013, we stood hand in hand on the beach in Marbella.

All our friends and family were there.

And when it got to the point of saying ‘I do’, I could see James was feeling nervous.

But he spoke loudly and clearly.

‘You’ll make me cry!’ I laughed.

And then, instead of saying our vows verbally, we each gave the registrar a bottle of sand which he emptied into a single, larger bottle.

‘Once you mix sand, you can never separate it,’ he smiled.

It’s an old Spanish tradition. And it said everything we wanted to say to each other.

Since then, James has carried on at the gym.

Last March, he was approached to appear in Men’s Fitness magazine. Someone who works in media had seen his photos online.

‘I’d love to!’ he grinned.

It meant he could show the world that anything is possible if you put your mind to it.

Dystonia is a part of James’ life, and our lives together.

But it doesn’t define him, and he’s carrying on with everything.

And our happiness? Well, that speaks for itself.

Our beautiful wedding day

Our beautiful wedding day


Ask your doctor

There are many health and emotional benefits to working out. But not all exercise is suitable for people with dystonia. Training with weights may reduce the effectiveness of treatments you might be receiving – so check with your doctor first. And for more information, please see www.dystonia.org.uk