Former Wales rugby captain Ryan Jones has revealed he is suffering from early-onset dementia at the age of 41.
Jones, who was involved in three Grand Slam wins for his country, was diagnosed with probable chronic traumatic encephalopathy (CTE) in December.
The NHS describes CTE as a progressive brain condition thought to be caused by repeated blows to the head and repeated episodes of concussion.
Jones, who has 75 international caps and was a member of the British and Irish Lions squad that toured New Zealand in 2005, spoke about his diagnosis in an interview with The Sunday Times.
“I feel like my world is falling apart,” he 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 can’t train harder… I don’t know what the rules of the game are anymore’
Jones played for Wales from 2004 to 2014 and was appointed captain of the team in 2008. He retired from playing rugby in 2015 and left his post as performance director at the Welsh Rugby Union in October 2020.
He received an MBE for services to rugby union and charitable fundraising at Windsor Castle in February 2022.
“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,” he said.
“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.”
Jones told the newspaper 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.”
The sport is ‘walking with its eyes closed into a catastrophic situation’
In June, The Alzheimer’s Society established partnerships with organisations such as 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.
Jones said he’d “lived that dream” he had as a child of playing for Wales and in the moment, it was “amazing”.
However, he said he would change things, if he could, based on his experience now, and believes the sport must do more to take preventative measures.
“It is walking headlong with its eyes closed into a catastrophic situation,” he said.