University of Tasmania Wicking Centre free online course boosts understanding of traumatic brain injury
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Barbara Frankel initially didn't worry too much after she got rear-ended by a car.
"I had stopped at the approach to a roundabout and a car just smashed into the back of me," she said.
"I didn't think too much of it at the time. I was shocked and dazed and didn't realise I had a brain injury at all."
Told by a doctor to rest up at home, it took a few weeks to realise something really wasn't right.
"I soon realised after five minutes of a conversation, I got such a bad headache and such fogginess that I just couldn't continue," she said.
"It feels like a really tight clamp around your head all the time that has not abated in over two years.
"It has got better but that sensation of something wrapped around my head has never gone and it just depends on what my activities are whether it flares up."
Dr Frankel's light sensitivity meant she struggled to use a computer for work, and heavy concentration brought on excruciating headaches.
Unable to easily find out information about her concussion, she took up new hobbies of rope and knot-making to keep her hands busy.
"I knew nothing and I never knew anyone with a brain injury … I found it really hard to get information and I wasn't really able to research it myself very efficiently," she said.
"I couldn't really think through what I needed to do to get that information and I was kind of expecting to get it from the health professionals I was visiting.
"I just had to wait until I was better and able to do my own research that I started to understand more about it."
A free online course offered by the University of Tasmania's Wicking Dementia Research and Education Centre is helping to bridge that information gap.
Over half of brains donated to the Australian Sports Brain Bank have signs of a degenerative brain disease associated with repeated blows to the head, researchers find.
The massive open online course, or MOOC, provides information about how the brain functions, the different types of traumatic brain injury and what consequences they can have.
It has already been completed by 25,000 people around the world.
Senior lecturer Jenna Ziebell said she was struck by a lack of publicly available evidence-based resources.
"We designed this course to be at the cutting edge of where knowledge is at this point of time with the recovery as well as the mechanisms of the injury," she said.
"There's a really vast array of information out there but whether or not it's getting to the right people so that we can support those who have sustained a concussion adequately throughout the recovery period is really challenging."
Researchers estimate there are almost 70 million reported traumatic brain injuries around the world each year, with about 80 per cent of those concussions.
But Dr Ziebell said that data wasn't accurate due to most people opting not to seek medical attention after a concussion.
"It is estimated that for every concussion reported there are three more concussed individuals who did not seek any medical attention," she said.
"This means the real number of concussions which occur each year could be in excess of 220 million."
Senior lecturer Christine Padgett said experiences of concussion or brain injury varied wildly.
"For a lot of people if they've had a mild concussion, they might not experience any differences, they might have some very short-term effects and then they recover really well," Dr Padgett said.
"However, for other people that experience concussion they can have quite a different experience afterwards, so they can experience other symptoms, and they can range from physical symptoms through to psychological symptoms.
"And for people that have more severe brain injuries, again it is quite variable the way people recover.
"So for some people they'll have minimal results afterwards and for others it'll be really life-changing."
Dr Padgett said researchers often dubbed brain injury an "invisible" condition.
"The person might look as if they're the same, but they have these experiences afterwards which can kind of change the way that they function in a range of areas," she said.
For Dr Ziebell, it's important that the course helps to erode the stigma around brain injury.
"Just because you've had a traumatic brain injury or you're living with the long-term consequence doesn't mean you're not able to hold down a job … doesn't mean you're not able to drive, you can, the world is still out there," she said.
The researchers are seeking feedback from people who have suffered traumatic brain injuries about the limitations of the course as they seek to get as many people to complete it as possible.
For Dr Frankel, a limit on how long people could take to complete the course meant she couldn't finish it.
But despite that, she said it still "answered so many of the questions I had".
"I wish that course had been available early on in my injury experience," she said.
"Everybody's experience of it seems to differ slightly, everyone's symptoms are a bit different, so understanding what those symptoms are and what helps them can only be helpful whether you're a sufferer or carer or employer."
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