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Writing Blindly in Incomplete Locked-In Syndrome with A Custom-Made Switch-Operated Voice-Scanning Communicator-A
Marco Caligari1, Marica Giardini2, Marco Guenzi2
1Integrated Laboratory of Assistive Solutions and Translational Research (LISART), Istituti Clinici Scientifici Maugeri IRCCS, Scientific Institute of Pavia, 27100 Pavia, Italy.
Background:
Locked-In Syndrome (LIS) is a rare neurological condition in which patients' ability to move, interact, and communicate is impaired despite their being conscious and awake. After assessing the patient's needs, we developed a customized device for an LIS patient, as the commercial augmentative and alternative communication (AAC) devices could not be used.
Methods:
A 51-year-old woman with incomplete LIS for 15 years came to our laboratory seeking a communication tool. After excluding the available AAC devices, a careful evaluation led to the creation of a customized device (hardware + software). Two years later, we assessed the patient's satisfaction with the device.
Results:
A switch-operated voice-scanning communicator, which the patient could control by residual movement of her thumb without seeing the computer screen, was implemented, together with postural strategies. The user and her family were generally satisfied with the customized device, with a top rating for its effectiveness: it fit well the patient's communication needs.
Conclusions:
Using customized AAC and strategies provides greater opportunities for patients with LIS to resolve their communication problems. Moreover, listening to the patient's and family's needs can help increase the AAC's potential. The presented switch-operated voice-scanning communicator is available for free on request to the authors.
