Imagine how you would feel if everything about your life suddenly changed – from who you are and what you do for a living to how you raise your kids and complete daily tasks.
It’s an experience Jane Vincent knows well.
“One day I was working in the software industry and the next I didn’t know what year it was,” she said.
Vincent had a seizure-type event six years ago at the age of 37. She still doesn’t know what caused it.
Doctors think encephalopathy – brain damage or disease caused by infection – is to blame. But no lumbar puncture test was done at the time, so she didn’t receive a concrete diagnosis.
“I’ll never know what happened,” Vincent said.
But she does know one thing: her life will never be the same.
Life with an acquired brain injury
More than a million Canadians live with acquired brain injuries – damage caused to the brain after birth – according to Brain Injury Canada. Falls and motor vehicle accidents cause half of those injuries. Non-traumatic events resulting in oxygen deprivation to the brain, as well as stroke, tumours, metabolic disorders, seizure disorders, and infections cause the other half.
“We often hear about traumatic brain injuries, but people are less aware of the non-traumatic brain injuries that can impact the brain,” said Heike Dumke, a cognitive rehabilitation therapist at the Watson Centre Society for Brain Health.
She emphasized that any insult to the brain can impact its ability to function. This often expresses itself in slowed thinking, poor memory and concentration, problem-solving and decision-making issues, behavioural challenges, headaches, nausea, trouble sleeping, and fatigue – just to name some.
“Fatigue is one of the most common physical symptoms of traumatic and acquired brain injury and it often lasts longer than other symptoms,” Dumke said.
Acquired brain injury can also cause a person to become easily frustrated and/or irritated when overwhelmed due to difficulties processing information efficiently and effectively. Given these challenges, individuals with brain injuries often struggle to reconcile who they once were with who they are after their injuries.
“Like with any other life-altering event, people think of life before and after a brain injury,” Dumke said. “However, a person with a brain injury needs to adjust to a new and different level of functioning.”
Roadblocks to recovery
Vincent can relate to the struggle of accepting change after an acquired brain injury.
“There are times when things are incredibly overwhelming and it’s scary because you don’t know what your brain is capable of anymore,” she said.
Vincent’s son was only 18 months old and her daughter was almost four when her brain injury happened. Suddenly, doing activities with her young children was hard. Parenting, in general, was challenging as she often had headaches.
“I wasn’t able to look after my kids,” Vincent said. “I couldn’t handle repetitive noise or counting out loud and I couldn’t read to my son and daughter because I had trouble processing words.”
She also struggled to complete basic tasks like cleaning the house, standing up long enough to cook meals and following recipes.
“By the time I got from the book to the stove, I forgot what I was doing,” she said. “I was very dependent on my husband.”
Vincent didn’t know she had an acquired brain injury until two years after her neurological event, when she had a neuro-psychological test to determine brain function and identify her deficits.
“I thought I would just get better,” she said.
Healing the brain
It’s not uncommon for people with brain injuries to put off receiving help because they think they will get better over time.
But after the brain is damaged, it needs proper training to re-build connections. People can develop negative habits without rehab, according to Dumke.
Individuals with brain injuries also face two types of roadblocks: functional difficulties that a brain injury causes and emotional challenges. According to Dumke, many people with these types of injuries lose hope – often because they don’t have access to the rehabilitative support they need.
“If rehab is not guided, it can go the wrong way and people don’t get the recovery they need after a brain injury,” she said. “The journey to recovery doesn’t end when a person is released from acute rehabilitation. This is why rehabilitation centres like the Watson Centre Society for Brain Health are so important.”
Access to a team of supportive friends, family and professionals plays an extremely important role in helping a person adjust to life after a brain injury – especially because society doesn’t always understand what it’s like to live with one.
Vincent enrolled at Watson in 2016 – five years after her seizure episode – when she felt like she couldn’t make any more progress.
She completed a seven-month program that involved fitness, cognitive exercises, mindfulness and meditation. After a few months, she realized her sense of humour had returned.
“When you have a brain injury, you don’t have the complexity of thinking to have a sense of humour,” she said.
Vincent is also better able to engage with her family, has more energy throughout the day, is able to think faster, exercise longer and follow and remember directions.
“I am able to manage day-to-day life better thanks to Watson,” she said. “It’s a safe place that really pushes the boundaries of recovery and that’s important for people with acquired brain injuries.”