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Karen Jones’ life changed on Christmas Eve of 1997 when she was involved in a car accident. Her spinal cord was damaged, leaving her suffering from tetraplegia.
Since the accident, she has joined the Spinal Cord Society, an organisation that advocates for research into cures for spinal cord injury sufferers. Their motto is ‘Cure, not care’, the focus being on getting people out of their wheelchairs – and getting research out of the labs and into trials.
Recently, an ethics committee turned down a trial that would have allowed for surgeries involving cells from the injured person’s nose to be transplanted in their spinal cord. The hope was these transplanted cells would grow and replace the damaged ones.
When I met Karen at her home in Auckland’s North Shore, we spoke about the Spinal Cord Society, her disappointment over the trials being declined, and what it’s like to be an nzgirl in a wheelchair.
Can you tell me a bit about your accident and injuries? I was in a car accident. There was a bilateral dislocation at C 5/6 which means my spinal cord was basically squashed. To start off with I couldn’t really move at all, but I think that was a lot to do with the drugs they put you on. Over time I regained strength in my arms and I got back some things which I shouldn’t have gotten back at all for my level. I can move my wrists and I’ve got a tricep, but I don’t have individual finger function. That’s what I was hoping I would get back if I went on this trial, because that would mean a whole lot more independence and freedom, basically.
So you would have been involved in the trial? It was voluntary but I was hoping. Ultimately, it’s up to the surgeons to choose who gets chosen. I’m not sure if they were going to do my level first or lower levels. Risk involved is supposedly higher, the higher the level. I was hoping to get chosen and be a part of that.
And what was going to be involved in that if you were chosen? The surgery basically takes the OEG cells located at the top of your nose, which are responsible for regenerating your nose – and they were hoping they would regenerate the loss of function in the cord if you transplanted and stuck them in. And the stem cells from the OEG cells would start growing. They have done similar operations in Portugal and ones in Japan and seven or so patients in Australia as well, using the same operation, just different delivery methods. I think it’s been proven to be safe. The fact is we haven’t heard of anyone getting worse or dying from it.
So it’s worth a try? Yeah, I mean, I’m coming up to almost ten years of being paralysed and I want to have something more out of my life.
The trials were turned down because of the lack of evidence about any negative side effects… The Spinal Cord Society itself is an American society. Each country has its own chapter – the American one did the rat trials and the rat trials were really successful. In Portugal they only published results on the first seven patients, but they have done over 150 patients from all round the world. So from my point of view it proves that it is safe. We haven’t heard of any side effects in the community itself – we have forums and everyone chats to everyone else. We would have heard about it if anyone had gotten worse. The internet is a door for people like me. They said that negative side effects weren’t proven but….
You can’t prove something that isn’t there? Yes! How are you meant to try it if they won’t let you? If you get told the risks involved, that you could get worse, that you could die – well, that could happen in daily life anyway! People should be able to have informed consent and be able to choose what they want to do with their own bodies. Especially since the cells are coming from our bodies, not from fetal cells or anything.
So what does the Spinal Cord Society do exactly? The lady who started it did it about 20 years ago after there not being anything in NZ in the way of research. Her husband was injured in a jet plane accident and he actually died a few years ago from complications from spinal cord injuries. She just kept fighting and trying to get people like me out of chairs and actually walking again. I call her my fairy godmother. She must be in her 60s but she’s got way more energy than anybody I’ve ever met and is really determined.
So what’s your typical day like? At first when you’re acute you are in a rehabilitation unit. It’s semi full-on rehabilitation but when you read about what’s available in the States - the equipment they have here is older than I am. In the first two years the injury can change, so that’s when you fight to get more visits. ACC covers things like that but they are also slow in improving their programs and stuff. But my day now…it takes a few hours just to get up in the morning. I have a little bit of free time for lunch, and then I study, then I have an exercise program I do every day, which starts about 3.30 until 5.30, then dinner and more exercises, just to stay healthy.
Is NZ a wheelchair friendly place? Not really. When I got out I stick to places I’ve been before. SkyCity is quite good because it’s not that old and has ramps and lifts everywhere and stuff. Even simple things like fitting under the table is hard. There’s only one place I have fitted under the table. Bathroom facilities often have two doors to get through. I usually have to always have someone with me anyway.
Camille Butler
To help out people with spinal cord injuries, you can donate to the Spinal Cord Society at any Westpac. Karen also sells rubber bracelets to raise awareness. To purchase one for a donation of $5 or more, email Karen at time2cure@yahoo.co.nz
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a car accident. Her spinal cord was damaged, leaving her suffering from tetraplegia. 
At first when you’re acute you are in a rehabilitation unit. It’s semi full-on rehabilitation but when you read about what’s available in the States - the equipment they have here is older than I am. In the first two years the injury can change, so that’s when you fight to get more visits. ACC covers things like that but they are also slow in improving their programs and stuff. But my day now…it takes a few hours just to get up in the morning. I have a little bit of free time for lunch, and then I study, then I have an exercise program I do every day, which starts about 3.30 until 5.30, then dinner and more exercises, just to stay healthy.