Transforming lives! Helping Marie communicate on her own terms, with her own words, in her own voice.
Almost everyone with Motor Neurone Disease will eventually lose their ability to communicate using natural speech, with some eventually not being able to speak at all. Understanding what the future may hold and the impact to her and her family, Marie Williams wanted to be prepared.
With the support of her husband Hugh, her local Speech and Language therapy team and in partnership with the Motor Neurone Disease Association Marie spent time recording a set list of phrases to create a synthesised version of her natural voice. When we met her we were thrilled to hear her unique accent spoken out through her communication device.
Motor Neurone Disease is often further complicated by changes in physical movement, so it was key that Marie was able to the use the most effective assistive technology with her communication device and that’s where the Ace Centre team came in. A switch, headmouse – assessing Marie’s physical circumstances and the environment she was living in we identified using her eyes – and an eye-gaze device was more efficient than other methods. Her family described it as a piece of science fiction brought to life!
“You’ve transformed our lives!”
The eye-gaze technology itself was only half the picture – key to making it as effective as possible was the positioning and setup of the device. Marie was very fortunate to have an amazing network of support to help remain active in her daily life and the lives of her family – from her husband Hugh to her speech and language therapist Matt, from the care home staff and highly dedicated and engaged student nurse to the local Environmental Control Service. The Ace Centre was proud to be part of such a collaboration creating the right environment to enable the technology to work for Marie.
A clamp-on her wheelchair and floor-stand provided by our Rehab Engineer ensured the eye-gaze was held in the correct position wherever Marie was, enabling her to communicate when she was sitting or lying down. The Environmental Control Service worked alongside us integrating her Kindle account, television controls and bespoke call-bell for nursing staff enabling Marie to personally shape her day’s activities and physical environment.
And she was able to do it in her own unique style. It was straightforward to download Marie’s voice onto her computer which fed into the eye-gaze software. It was easy and intuitive for Marie to operate – and the familiarity and comfort of her voice meant her personality and character was ever present!
“This is a wonderful system. Thanks to it Marie’s had a boost to her wellbeing and it’s given her back some independence”
Our partnership with Marie and her family wasn’t just about assessing and then installing the equipment. Built into her system was the ability for us to work remotely to fine-tune, update and change software and operations. It meant that Marie and her family had the confidence that the technology was the best it could be and it could continue to be developed and adapted to fit around her life.
