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Meet Paul

Paul using his eyegaze

This film allows us a brief glimpse into the life of Paul and Julie, who are living with Paul’s diagnosis and the inescapable changes and challenges that are brought on by Motor Neurone Disease. What struck me when I first met this delightful couple with my colleague Rachel Moore was their resilience and strength of spirit, particularly as it would be understandable given this diagnosis, to feel devastated and lost.

As a Speech & Language Therapist my initial aim for this film was to focus quite naturally on communication. I wanted to show how Paul and Julie were coping with communication, despite Paul’s complex physical disabilities. I also wanted to demonstrate how technology and strategies, such as eye pointing to letters on a chart, can support that most basic human need, and keep the door to communication open.

However, this film became more about how one man, with an infectious humour and robust South London character stayed completely and utterly present.  Paul’s role as a husband, dad, friend and much-loved member of his community was still very evident.

In the film, the couple talk about their experience of voice banking. Since we made the film, technology has moved on and thankfully voice banking no longer needs to take as long to complete. Paul’s personalised synthetic voice quite clearly has a South London accent, which is lovely, even if it is an approximation of what Paul used to sound like.

With message banking however, Paul recorded short clips of himself hilariously mock-berating his dog, creating football sayings / chants or telling loved ones how much he loves them. Paul was able to record himself talking, laughing and joking before he lost his natural speech and these mini recordings are Paul’s personality shining through.

I will cherish my time working with Paul and Julie on this film. It has taught me that with the diagnosis comes grief, because inevitably there are going to be losses along the way. However, Paul and Julie’s grief is not despairing but is in fact life-affirming. I know better now that grief is not depression as I understood it before, but a completely normal psychological reaction to loss. I was able to see that Paul and Julie are coping with these losses because they had options. The option to voice bank, to message bank, to use technology for communication and explore various other strategies and decide what suits them best, the option to reformulate and change.

For those of you who are interested, in this film alongside the Eye Gaze technology, Paul was using a colour encoded e-tran frame which you can download for free from our website, here. They also explored Boston Hospital’s Communication Flip Book which is also free and customizable.

And finally, some “thank you”s. Thank you to my husband Alex for his time and expertise in creating this short film. Thank you to Speech & Language Therapist Anna Pardanjac for referring Paul to our NHS Specialised AAC Service and for doing the groundwork by supporting Paul’s decision to voice / message bank for future use in AAC. Thank you also to my colleagues at Ace Centre for their insights and support and a special thank you to Julie and Paul for allowing us to share their story.

I hope you enjoy the film!

Suzanne Buckley

For a full transcript of the film see here

It's opened up a brand new world for me, not only can I now communicate the necessities of everyday life but I can also keep in touch with the outside world

Paul

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