When Cole Moore started having seizures almost 10 years ago, the Courtenay man got checked and was diagnosed with a condition known as psychogenic non-epileptic seizures.
That wasn’t what was really going on in his body though.
“For five years after that, we couldn’t get anybody to go against that,” says his dad Brian.
The problems continued for Cole, and he was diagnosed with epilepsy by a neurologist in Vancouver. It wasn’t the underlying cause however but rather one of the effects, along with type 1 diabetes. It took several years, but a doctor did a lumbar puncture and found the source of his grand mal seizures, which result in loss of consciousness and violent muscle contractions. He was given what was a relatively unusual diagnosis called auto-immune encephalitis.
“If somebody had found a diagnosis right away, they could’ve changed things,” says Brian.
Cole, now 32, needs a lot of medicine to try to control his condition, but as his sister Laurel Gibbons says, he has not been able to work or look after himself. The seizures even affect his ability to be around his children.
“This stuff eats at Cole,” Brian adds.
For the last five years, his dad has looked after him. Brian’s wife can spell him off, but she also works outside the home, so he does not get out much anymore, and when he started taking care of his son, he was pulled away from his job with a local flooring company for good. Over this time, he has logged all of his son’s seizures on his phone and says Cole has experienced more than 500.
“Trying to get someone to listen to us these five years has been horrible,” he says.
Brian wishes they could spend time as they once did. When he first took Cole in, he bought a couple of new fishing rods for them to use, but they have not been able to go.
“Believe me, they’ve collected dust,” he says.
The situation has affected his other kids too, who didn’t realize how bad Cole’s condition was at first.
Unfortunately, as Gibbons says, there is little to no support for parents like her dad who have to take care of their kids as adults.
“There is no funding for parents caring for adult children,” she says. “My brother has to be watched 24 hours a day.”
In response, Gibbons has just set up a GoFundMe account to raise money to help her father out in light of all the costs of travel for Cole’s treatment as well as the fact that her dad has not been able to work.
Over the last year or so, Cole has been in an artificial coma a couple of times, while having to go to hospital in Vancouver, his dad alongside for support.
There is some hope. Cole is undergoing brain surgery at Vancouver General Hospital in the hopes of dealing with his condition and giving him, as his sister puts it, a chance at a normal life. He had the first surgery March 2 and his brain is currently being monitored for a week or two for seizures to see where they are happening in the hopes of being able to complete a follow-up surgery.
In the meantime, Brian can only watch, visit his son throughout this ordeal and hope for the best.
“Every day, he wishes he could be better so I could get my life back,” he says. “I just wish he didn’t have to go back through this…. He so wants to get back to having a life.”
The GoFundMe page, “Help support coles second chance at life,” can be found at https://bit.ly/3c3VqvE