We started pursuing this story because there are thousands of Australian stroke survivors desperate to regain their independence. There’s a stroke in Australia every ten minutes. One in six of us will have one. That’s a lot of people left with often permanent disability - about half a million Australians so far and climbing.
There is no treatment for stroke, apart from rehabilitation.
And rehab is hard yakka. Even if you have the motivation and drive to do it after a stroke, access to it in Australia is extraordinarily difficult for tens of thousands of people.
There are some great rehab practitioners out there, but most stroke survivors and their carers can attest that finding them, and then getting treated by them, is mission impossible.
I know exactly how hard it is, because five years down the track from the stroke that nearly killed my father, I’m still watching my parents’ frustrations with rehab availability.
So imagine the interest among stroke survivors with news a simple injection could give them back some of what the stroke took away.
An American clinic, the Institute of Neurological Recovery, has been injecting stroke patients with a drug called Etanercept, and reversing the effects of stroke in varying degrees for hundreds of patients.
When you know how tough the stroke rehab road can be, you can understand how an unconventional, untrialled, treatment is giving hope to thousands of stroke survivors, even if the medical community is skeptical.
When Nathan Jones contacted me about his fiancee Kylie Newlove and told me they were fundraising to get her to America to try the treatment so she could be a hands on mum again, we tagged along for the ride.
Kylie had a stroke while she was in labour with her fifth child. It was four days before she even knew she’d had a baby. She was told she would never walk again. But Kylie’s a pretty determined woman and 17 weeks later walked out of hospital. But the level of disability and chronic fatigue she was left with, still rendered her unable to give the level of care to her kids that she wanted to give, and totally dependent on Nathan.
Nathan and Kylie were on the breadline after her stroke. Nathan was forced to stop work to become her carer, so getting to America to try Etanercept was a tough ask, but they were set on getting there. Friends and family started fundraising for them.
Rugby league legend and stroke survivor John Peard was the same. He has doggedly pushed through years of rehab but was willing to try anything to get more of himself back. Like many of our star sportsmen of the ‘70’s John didn’t have much money. His friends and Men of League pitched in to raise the cash to get him to America.
Both were overwhelmed when they raised the cash and thanks to Virgin’s generosity, coped with the stress of overseas travel remarkably well. I suspect the anticipation of the treatment may’ve helped too.
Watching them have the injections was amazing. It seemed so simple and in some ways appears rather unscientific.
John and Kylie were tipped upside down after the injections and held there by their legs, to maximize absorption of the drug. Then tipped back up. It seemed a bit basic to me, even vaguely like some weird Middle Ages scene. I couldn’t help but wonder how my Dad would look doing that and whether it would even be possible for him with his level of paralysis.
As you’ll see in the story, the effects of the injection were almost immediate.
I’m sure there’ll be people who watch Kylie and John on Sunday and deem them foolhardy. There’ll be others – survivors and carers – who’ll well understand their desperation to try anything thanks to frustrations with access to post-stroke care here.
I’m not a doctor, but like thousands of Australians, am very keen for a better option for stroke rehab. Judging from Kylie and John’s experience, it was a gamble that was worth it. They certainly help make the case for a fair dinkum, clinical trial of Etanercept for post-stroke treatment.
Standby for more news on that.
Chris Bath's report will air this Sunday March 29 at 7:00pm.