Jaspal's story

Being a social person the last thing that Jaspal would give up was her ability to communicate. She was fortunate to have full time carers and a family that live close by and were there to support her. She also had many visitors to keep her spirits up. Communication became essential as she lost the full range of her voice, people had difficulty understanding her. To combat this situation she started to use her mobile phone to text what she wanted to say and her carers would be her voice. In those days there was no smart phones nor tablets and Jaspal used what technology was available. Jaspal did use the Light Writer which helps the patient write sentences that others can read from a screen. The new ones have voice technology where the words types by the patient are "spoken" by the device. The Light Writer was fine for someone with use of hands but once that is no longer possible the Light Writer does not help.

Quite soon Jaspal lost the ability to type and turned to further technology to help her communicate with the steady stream of visitors and well-wishers. She would not sacrifice the social side of her life and would not let MND take it away from her. Without the use of her hands to type Jaspal then used the next piece of technology - Eye Gaze. The Eye Gaze technology works by the patient staring at a picture, word or letter. The Eye Gaze picks up what the person is looking at and appends the picture, word or letter into a message box. In theory this is a perfect technology for someone who can only move facial features but Jaspal found it tiring, slow, inaccurate and generally frustrating. The technology has moved on since Jaspal but to stare at an object for an amount of time is tiring for someone with MND. Jaspal also tried the mega bee board but again found that tiring.

As the disease progressed, Jaspal moved back to familiar technology she had used before. She used the mobile phone and predictive text to make sentences or send messages to friends and family. By this stage she couldn't type the information into the phone herself but her carers or family did it for her. This simple technology worked very effectively. When she lost her voice, Jaspal had tried to communicate by "mouthing" words. As she lost further mobility in her jaw she started mouthing letters but she became frustrated that several letters were similar and communication took too long for her. She moved back to predictive text on a simple mobile phone. She need only "mouth" one of 8 numbers and the predictive text would translate them into words. Jaspal found this way of communicating quick and accurate.

Jaspal communicated using this method for 5 years. We are all convinced that using this simple technology increased her quality of life and kept her fighting MND until the physical effects were too much for her body. She died in May 2012 and signed off with the text "Goodbye" sent moments before she passed.