Dementia: Ex-Wales rugby captain Ryan Jones, 41, ‘scared’ after brain condition diagnosis

Steve Thompson recalls signs of his early-onset dementia

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Speaking with the Sunday Times, Ryan said he felt like his world was “falling apart” following the diagnosis. CTE is a progressive brain condition thought to be caused by repeated blows to the head as well as frequent episodes of concussion. According to the NHS, it can “eventually lead to dementia”.

The sportsman has 75 international caps and was also a member of the British and Irish Lions squad that toured New Zealand in 2005.

However, he retired from rugby seven years ago and in 2020 stepped down from his post as performance director at the Welsh Rugby Union.

In an interview with the Sunday Times, Ryan – who was awarded an MBE last year – said: “I am really scared because I’ve got three children and three step-children and I want to be a fantastic dad.

“I lived 15 years of my life like a superhero and I’m not. I don’t know what the future holds.

“I am a product of an environment that is all about process and human performance. I’m not able to perform like I could, and I just want to lead a happy, healthy, normal life.

“I feel that’s been taken away and there’s nothing I can do… I can’t train harder, I can’t play the referee, I don’t know what the rules of the game are anymore.”

Ryan explained that after experiencing depression he began to have short-term memory problems and was becoming forgetful.

“It terrifies me because I don’t know if, in two years’ time, we’re sat here and these episodes are a week long, two weeks long or permanent,” he said.

“That’s the fear, that’s the bit that never leaves.

“That’s the bit I can’t shake off.

“Every episode I have also leaves a bit of a legacy.

“Everything we cancel, every relationship that I poison or don’t have time for anymore, just makes it a little bit tougher to cope.

“I don’t know how to slow that down, make it stop, what to do.”

It comes as the Alzheimer’s Society last month set up partnerships with organisations including the Rugby Players’ Association to provide a permanent way of referring any past and present player or manager who has been diagnosed with dementia or is caring for a loved one.

Although Ryan said he wouldn’t change the experience of “living the dream” of playing for Wales, he believes the sport must do more to take preventative measures.

“It is walking headlong with its eyes closed into a catastrophic situation,” he added.

Typical symptoms of CTE are:

  • Short-term memory loss – such as asking the same question several times, or having difficulty remembering names or phone numbers
  • Changes in mood – such as frequent mood swings, depression, and feeling increasingly anxious, frustrated or agitated
  • Increasing confusion and disorientation – for example, getting lost, wandering or not knowing what time of day it is
  • Difficulty thinking – such as finding it hard to make decisions.

As it progresses it can lead to:

  • Slurred speech
  • Significant memory problems
  • Parkinsonism – the typical symptoms of Parkinson’s disease, including tremors, slow movement and muscle stiffness
  • Difficulty eating or swallowing.

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