Letters for Brian offers insight into dementia and life after rugby league

Despite everything she has gone through, Karen Johnson does not hesitate when asked how she feels about rugby league now.

She still loves it.

Ms Johnson was brought up on the sport as a child, her late husband Brian played professionally for the St George Dragons, and it "paid the bills at our house forever".

Brian Johnson played 149 games for the St George Dragons. (Supplied: Karen Johnson)

But she cannot bring herself to recommend rugby league to a child considering taking it up.

"The knowledge has been there for a long time that knocks to the head, if you're susceptible to it, can cause CTE [chronic traumatic encephalopathy, a brain disease]," she said.

"Getting people to realise that hits to the head, landing on the ground, shaking your brain around is terrifying.

" I wouldn't get a seven-year-old to put their head in a scrum, but that's my experience and there are so many players of Brian's era who don't have CTE. "

Ms Johnson's husband Brian died from Alzheimer's disease, which the family believes was likely caused by CTE.

As a coping mechanism while caring for her husband in his latter stages of life, Ms Johnson wrote him letters that she has now turned into a book.

Dreaded collisions

Brian Johnson was the 1980 Dally M fullback of the year and, on top of his six years at the Dragons, played a season for Eastern Suburbs and three years in Warrington in the United Kingdom.

Even at the height of his career, he dreaded the collisions of the sport.

"He could run really fast, and he said he could run really fast because he was scared of getting tackled," Ms Johnson said.

"I'm really pleased to see [the NRL] trying to mitigate the [concussion] risks involved, but I don't think you can stop men and women wanting to play the sports they want to play."

Karen and Brian Johnson were married in 1979. (Supplied: Karen Johnson)

'I just needed to talk to him'

Ms Johnson said the diary letters to her husband helped her process the challenges she was facing.

"At the time, I probably left the house for about six hours a week and other than that, I was just home caring and it was at the stage where we could virtually not go out," she said.

"When he was tucked up in bed, I just needed to talk to him, so when he wasn't there, I was still talking to him like I used to."

Brian Johnson died in January 2016.

The letters have formed the basis for Ms Johnson's book, Letters For Brian.

Rugby league writer Roy Masters said the book was a fitting tribute, an educational resource and a love story.

"The words 'humanitarian' and 'rugby league' rarely appear in the same sentence but Brian, particularly as father, friend, husband and coach, united them," he said.

Brian Johnson had a successful coaching career with Warrington Wolves after he retired from playing. (Supplied: Karen Johnson)

Ms Johnson said that while writing the letters and her reflections on the time had been a cathartic experience, the book also provided an insight into life while caring for someone dying from Alzheimer's disease.

"I think people assume that dementia means you can't find your car keys and you can't remember your children's names, but that's not necessarily it," she said.

"They don't realise that everything that we do and what we think is intrinsic is memory — how to eat, how to speak, how to read, how to write.

What is CTE? Photo shows A silhouette of an Australian football umpire throwing the ball in from the boundary. The brain disease is caused by repeated head injuries. It's most commonly associated with athletes in contact sports, but there's a lot researchers are still trying to learn about it.

"Brian stopped being able to read and if he wanted to write something down and he had objects on his desk, he didn't know which one the pen was."

Ms Johnson said she had shared more of her life in the book than she had expected to, but she wanted it to be a resource for people going through the same experience.

"People are going to know more about us than I realised, but I kind of wrote it for me," she said.

"The interest in it has taken me by surprise and I'm actually surprised at how long it is because people research books, but I just sat and had a stream of consciousness and just wrote it."

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