Man with Duchenne Muscular Dystrophy wants more control over care

As a schoolboy, Rhys Bowler remembers clinging to the wall in fear he would be knocked over by his classmates.

Something that would have had a devastating impact on his body.

This is because Rhys has Duchenne Muscular Dystrophy – a severe, progressive, muscle-wasting disease that leads to difficulties with movement and, eventually, premature death.

By the age of seven, Rhys was unable to move his legs so used wheelchair to get around. And, as his arms became weaker, he also needed someone to push him and would often find himself stuck indoors.

While he had a powered wheelchair at school, he didn’t at home – so would frequently watch his friends play, while he remained inside.

‘Starting school I was very able bodied and had most of my physical ability, as time went by, however, I would became extremely weak. I did notice my decline even though it was very gradual,’ he says.

‘By the age of seven, I eventually had to surrender to a wheelchair, at this point it was only for rest periods, as the fatigue become a daily endurance test on my muscles. 

‘I would became more reliant on using the wheelchair eventually had to have someone push me around as my own weight become too much for my weakened arms to push the manual chair.

‘When it was home time, however, it was a different story. I lost so much of my independence, truly some of the darkest days of my life, it’s when I started suffering mental health, although I never identified it as that then.

‘I couldn’t get out to play with my friends, so there I sat indoors watching the world go on without me through the window. 

‘Discovering isolation for the first time can be an extremely lonely place for a 10-year-old.’

Now, aged 34 and still living in Wales, Rhys has lost the use of his entire body and lives on his own, with carers helping him throughout the day.

He uses his thumb to drive his wheelchair and a computer controls everything in his flat and helps him communicate through messages and emails. 

During lockdown Rhys started writing a diary about his feelings and worries, including the things he believes he is missing out on, such as relationships and sex – something he says was difficult for him even before the pandemic.

‘It’s no wonder you’re angry. In my case you can literally [only] move a finger, you’re confined to your house, you can’t leave the house without someone’s help, and the reality of the situation is human beings let you down – often through no fault of their own or human error,’ he says.

‘Trust me though in this situation every little indiscretion is amplified and you’re living in a pressure cooker.

‘To combat this, think of the positives. In my case you can move your thumb, you can move you head to do things, yes with technical aids – but it’s still a positive.

‘And most of all the thing that I cherish the most, my striking good looks, my brain, the ability to communicate and the essence of your being the thing that makes you you.

‘Everyone’s situations different though, try to think of your positives.’

Now Rhys has started speaking in public about his condition and answering commonly-asked questions

‘Sex and intimacy are possibly one of the most challenging quandaries to a disabled person,’ he explains.

‘It’s the subject I am asked about the most. Sex is after all a human need, one which every human being desires at least once a life and not to mention it can be a whole lot of fun.

‘Sex is entirely possible, I want to show able-bodied society that our needs and desires are no different from theirs. We just often require a little more imagination and maybe a little more planning than everyone else.’

Back in 2017, Rhys’ brother, Geraint, died aged 27 from the same condition – which left him devastated.

Rhys says: ‘My brother was my rock and support network my version of a wife and kids, I suppose. It made me question my life and purpose, I honestly believe it broke me down and I became another person. 

‘I am going to speak candidly here – I was ready to die back then, I had been ready to go since I was 25. I know that it’s maybe a bit morbid. I wasn’t depressed or suicidal. I wasn’t sad – I was bloody bored. My body had practically finished with its deterioration I had been denied everything I did for entertainment.

‘When you deteriorate yourself, it bothers you not a jot because it’s you. When it’s your loved one, a fellow sufferer, you witness the decline from the outside and it isn’t fun.

‘And it’s a cruel twist of fate because I’d already achieved to the max – I’m a grumpy old man with DMD at 32, I was completely fine with it. 

‘But my brother had so much left his body still worked, he was so much more able than I the bottom line is this, he was not done and he did not want to die.

‘My initial reaction I will admit was jealousy. That was my mantel, my prize, my reward after fighting so hard for 31 years.

‘Then anger – he was scared, I was not. As a big brother you feel it’s your duty to protect your sibling to take that bullet for him.’

Rhys is entitled to 24-hour NHS care but has no control over who the carers are, or the hours they can work. 

If he employs his own, he has more freedom – which allows him to live a life he wants.

As a result, he wants the Welsh Government to follow the model in England and Scotland to introduce personal health budgets so he can choose the most flexible balance – something he is campaigning for.

He adds: ‘I want to choose the care assistants I want.

‘I want to know who is coming in my home to help me with my intimate personal care, and I want them to be people I trust and have trained in how best to provide my care.’

More details on Rhys’ campaign can be found here.

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