Here is a truly inspiring and moving story about change. It’s a story of catastrophe, challenge – and amazing courage. It’s also a story of love, laughter and loyalty.
From the YouTube page:
Seventeen years ago, Maree Bourke-Calliss suffered a massive stroke from a knock received during a netball game. She’s now what the medicos call “Locked In”, unable to move or speak. Her brain is 100% there, but it’s inside a body that can only communicate by blinking. For this interview, we sent Maree a bunch of questions in advance. It took her nearly a week to blink out the answers. In the video, Maree’s responses are read out by her sister, Berni. (Produced and directed by Monique Schafter and Aaron Smith for Hungry Beast. Edited by Andrew Glover.)
[youtube clip_id=”A3uEMyVnThI” width=”424″ height=”241″]
[youtube]http://www.youtube.com/watch?v=A3uEMyVnThI[/youtube]
Our monthly newsletter
Hi Sue,
Over the weekend we visited some good friends of ours and they told us about locked-in syndrome. My friend is very technically competent and somewhere along the way he came up with the idea of wanting to help people with locked-in syndrome. To do this he bought a pair of glasses with a device that detects blinking. I can be adjusted to ignore normal blinks and detect deliberate blinks. He has then linked it to a computer which then scans the alphabet systematically. Whilst it isn’t the fastest device in the world, I was able to type my name (Stephen) in about a minute. I thought this was fabulous, as the same technology could also be developed and used to select certain common commands such as “I’m hungry” or “I need to go to the bathroom.” He is doing this all voluntarily and from his own funds, and he doesn’t expect any reward, he just sees how technology can be used to help. Unfortunately, he has made some attempts to offer help and has been met with no reply. Can you suggest an contact or organisation who may be receptive?
Hi Stephen … the work your friend is doing sounds wonderful! Unfortunately, though we posted to our blog about Maree Bourke-Callis and Locked in Syndrome, we don’t have any direct contacts who have been affected by the syndrome or who work in the field. Has your friend contacted organisations like the Brain Foundation or the National Stroke Foundation? If he hasn’t already done so, these may be useful leads. If they can’t help directly, they will no doubt have more extensive networks in the field than we do. And perhaps your friend might consider approaching Peter Coghlan, who’s based in Perth. Visit his website to learn more about him – he’s an amazing guy! :) Once again, we have no personal connection. Just thought to make some suggestions that might be helpful for your friend. We wish him a highly successful and deeply satisfying journey with his invention!