Karen Brown didn’t realize she had a brain injury until she was 60.
Throughout her life, she’d had more than 20 concussions, but never linked troubles she had with reading, math, memory or an ongoing struggle with depression with the head injuries. She received the injuries in many ways: falling as a child, slipping on ice, motorcycle and vehicle crashes. But it wasn’t until 2015, when her life fell into chaos, that she thought to get some testing done.
“It was the perfect storm; my father was dying of cancer, my mother was diagnosed with Alzheimer’s, I had all this other health stuff going on and my brain just stopped working properly,” Brown said.
At the time Brown was working at the University of Victoria, which sent her to the Victoria Memory Clinic for testing. She was told by clinicians that she had a concussion-related brain injury.
“They said you can still work, but you need quiet, uninterrupted work,” Brown said. “Well, I’m an administrator – how much time do you get to have quiet?”
Brown said at first she could not accept the diagnosis.
“I categorically denied that that was happening and said they were all nuts,” she said. “I think it was two and a half years before I would actually say ‘I have a brain injury.’”
She tried working for a while longer but eventually had to stop.
Brown said there was no place for her to go for information, no referral to a specialist and no direction for what she should do.
“Like all mental health issues, there just wasn’t information out there,” she said. “I’d call one office and they’d send me to another … In the meantime, I wasn’t collecting EI because of existing comorbidities.”
Brown also has Crohn’s disease, as well as several other chronic health issues.
In the end, she would rely on her savings and retirement funds to keep herself fed and sheltered.
It would be four and a half years before Brown would work again. During that time her days often consisted of getting out of bed, moving to the couch, and then going back to bed again, believing that she was stupid.
“Ninety-nine per cent of us suffer from depression as a result of brain injury,” she said. “All of the depression things you have to fight logistically every day, and sometimes that’s easy for people and sometimes it’s not.”
A couple times Brown sought out psychological services without much success.
When she tried to address the issues with her doctor, he told her he didn’t want to put “brain injury” in her file, as it would “label her.”
It was only by chance that one day Brown came across an advertisement for a job at the Victoria Brain Injury Society (VBIS).
“I’d never even heard about them in the four years I had been off,” she said. She applied for the job and now works there as an administrator, where she uses strategies like writing down lists to make sure everything gets done.
It was through her position at VBIS, which links people to case managers and offers courses for those with brain injuries, that she learned about treatment options such as concussion rehabilitation, which is offered by specialized physiotherapists, occupational therapists and other specialized health practitioners.
Devon Cochrane is an occupational therapist and the coordinator of the concussion program at Tall Tree and the Victoria Concussion Collaborative.
He said that a major problem with diagnosing concussion issues is the diversity of a head injury, and disagreement in the medical field.
“Concussions are a complex injury due to changes to the brain’s connective tissues. … They can result in mental health or behavioral changes,” Cochrane said. “The term ‘concussion’ has a lot of debate, because it’s more of a catch-all collection of signs and symptoms. There are 42 different definitions of concussion … so there’s quite a lot debate.”
|Devon Cochrane (left) guides his coworker Ashley Stewart through visual exercises he commonly conducts with patients suffering from concussion symptoms. (Nicole Crescenzi/News Staff)|
The injury itself isn’t a result of swelling, but of microscopic injuries to the brain which can leave acute and chronic issues.
Many people don’t link mental changes they experience after a head injury with the concussion, even though they are exceptionally common.
“It’s not always obvious, people don’t always go into depression or anxiety,” Cochrane said. “But they might feel changes like less emotional energy, more stress, finding it harder to engage with people, or experience cognitive effects such as changes in attention span, memory problems and trouble finding words.”
These kinds of symptoms, he added, can be compounded by stress – such as losing both of your parents at the same time.
Finding a physician or health worker who is aware of this link isn’t easy, simply because most health practitioners aren’t trained to recognize symptoms.
“I think a lot of reasons why things persist is because they’re not really understood,” he said. “It could go months or years before someone realizes they’re having symptoms.”
Once a connection is made, however, options are available.
Concussion rehabilitation can help people to retrain their brains, whether through specialized therapy for things such as reading, or getting a referral to a mental health specialist.
The work, Cochrane said, can rely on a team for treatment to address multiple symptoms, as well as aiming for a balanced life.
“What we want to do is give people hope and options,” Cochrane said.
For Brown concussion rehabilitation isn’t in her price range, and at 65 she believes she’s become more comfortable with herself. She said that after facing stigma about brain injuries and mental health from doctors, her family and herself, she’s glad to see the conversation turn.
“It’s really positive that there’s more conversations about concussions,” she said. “The longer it’s a buzzword, the better chance we have of someone sort of taking up the banner.”