Locked-in syndrome (LIS) has recently come to the public attention, courtesy of the film and book ‘The Diving Bell and the Butterfly’ – the story of the French journalist, Jean-Dominique Bauby, who was afflicted with the condition after a massive stroke. Whilst LIS is comparatively rare, one of its major consequences, the inability to communicate effectively, is shared by victims of severe stroke, late stage motor neurone disease, multiple sclerosis, cerebral palsy and extreme spinal trauma.
In cases where the patient can neither speak nor write legibly, either due to the effects of the illness or because they have to be ventilated, the inability to converse is a major problem to life quality. Frustration from being unable to express basic needs and depression due to boredom are major barriers to coping with such illnesses.
In these cases eye movement becomes the most versatile communication tool but existing ‘eye-tracking’ technologies tend to require lengthy calibration, tire the eyes, require the user to have some aptitude for using computers, and carry significant costs.
A South Wales company have produced an alternative device which enables convenient, frequent, mobile and affordable communication, avoiding the need for calibration, and simplifying its operation to suit the most adamant of technophobes. The ‘MegaBee’ is an assisted communication device which uses colour coded blocks to identify letters and numbers. The patient merely looks at a block and blinks, the carer presses corresponding coloured buttons and the text is printed out on a screen. A customised library is also provided to give a shorthand route to frequently used phrases. For example, ‘T1’ could be stored as ‘I am thirsty’. These phrases can be compiled by the carer and uploaded to the ‘MegaBee’ using a wireless link to a computer.
The integrated secure wireless link offers extended functionality such as large screen displays, saving text for writing letters, or introducing predictive text or speech synthesis.
Motivation to develop the device came from an approach by a Monmouth resident whose daughter had been knocked down by a car on the A40 in May 2005. The impact resulted in multiple injuries including severance of the top vertebra from the skull. This extreme spinal trauma was the cause of the young woman’s locked-in syndromeJ. Her only means of communication is with one eye and one ear.
Initial care was provided at Stoke Mandeville Hospital where the prototype device was tested, and valuable feedback received. During this period consultation with market leaders in the UK, Sweden and Germany ensured the product suited the needs of a much wider patient base.
The product has found a unique niche in the provision of healthcare in this most specialised of areas. The design company believes this is due to their philosophy of ‘technology for its benefit, not for the sake of it’, producing designs which use technology to simplify tasks and provide easy to use solutions.
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