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FAQs - AAC + locked-in syndrome

FAQs

  • what is locked-in syndrome?

This medical condition is described in our glossary

Locked-in syndrome is a rare neurological disorder, characterised by complete paralysis of voluntary muscles in all parts of the body except for those that control eye movement. Thinking and reasoning function normally, but there is inability to speak or move.

  • what causes it?

This syndrome may result from traumatic brain injury or diseases affecting circulation or nerve cells, such as motor neuron(e) disease.

See also brain injury and motor neuron(e) disease (MND).

  • what help is available?

Useful information available at

  • can you communicate if you have locked-in syndrome?

If you have good eye control, you may be able to use a low tech e-tran or high tech eye gaze method of AAC, as described on the Communication Matters website.

 


You may be interested in Martin Pistorius' book, Ghost Boy.

Ghost Boy is the compelling story of Martin Pistorius who at the age of 12 fell inexplicably sick. First he lost his voice and stopped eating, within eighteen months he was mute and wheelchair-bound. Martin's parents were told that an unknown degenerative disease had left him with the mind of a baby and with a poor prognosis for survival.

The book eloquently weaves its way as Martin recounts his journey of recovery against all the odds. It is a brave and moving account of his struggle to communicate in a world full of changes. Martin describes himself as ‘a man-child reborn in a world he didn't know’, unable to remember anything before his illness but clearly aware of all around him in his world of silence. Through Martin's story we get a glimpse what it is like to be unable to communicate yet feeling and understanding everything. Martin's emergence from his darkness enables us to celebrate the human spirit and is a wake-up call to cherish our own lives.

"It is a deeply affecting and at times shocking book... The Diving Bell and The Butterfly but with a happy ending."
The Sunday Times, 17 July 2011

"[Pistorius’s] levels of empathy are remarkable, perhaps because he was forced for so many years into the role of watcher and listener, hearing people unburden their problems around him, absorbing their pain without them knowing... [his] communication is strikingly direct, almost fearless in the way he confronts emotional reality."
Catherine Deveney, Scotland on Sunday

"Martin tells the story of his remarkable recovery—and how he eventually came to find love, a home and a job… Now in a deeply moving – and ultimately uplifting - new book, Martin Pistorius tells the amazing story of life as The Ghost Boy." 
The Irish Mail


Although this information is believed to be accurate, you are strongly advised to make your own independent enquiries.

Last updated December 2012

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