Last week we had the chance to receive Rick’s visit to the office. Rick contacted us in June after his Speech and Language Therapist recommended him Predictable. He very much contributed to improving the accessibility of our website by providing much feedback. We found his suggestions so useful that we invited him to come tell his story and help us improve Predictable. Rick has a Ph.D. in biology. He worked for many years at Cambridge University and had the chance to travel the world during his career. “In 2010 I started to have difficulties remembering how to do my job … my memory that used to be incredible became just very good” He said with humour. After getting multiple tests, he was diagnosed, 5 years later, with Primary lateral sclerosis (PLS), a rare type of motor neuron disease that affects about 150 people in the UK. “The problem with MND is that it’s very individual, it affects everybody differently” told us Sue, his wife who came as well. Rick added with emotion, “I made many friends who have been recently diagnosed and are already no longer with us”. He highlighted the importance of reacting at the time of diagnosis. He showed us how his voice sounds when he banked it with Model Talker and said he is happy he did it as it can deteriorate very fast. To him, as soon as you get to hear the diagnosis, you need to think in the long term. “Using eye gaze technology is going to be very useful for the long term” as he will be soon no longer able to move his neck. “The emoticons are hilarious. Having this kind of feature helps you be happy even though it’s very hard when you have MND.” He also found useful to have the option to attach symbols to phrases: “I lost functionality inside my head that allowed me to deal with a crisis. My ability to solve problems is now zero” After telling the team about his background and the MND condition, he tested and gave us feedback about some new features of Predictable 6 and ended up saying: “The thing that you’ve made is going to help me so much. I am so happy to be here and to have the opportunity to thank you. Thank you so SO much for having done something that will make my life so much easier.”
