A major project, which aims to help people with motor neurone disease (MND) to maintain a sense of identity after they lose their ability to speak, is being highlighted as part of a research event in Trinity College Dublin (TCD) this week.

The way we speak and our unique turn of phrase helps us to connect with friends and family in a more personalised way. Losing this ability can therefore have a devastating impact.

MND is the name given to a group of diseases in which there is progressive degeneration of the motor neurones in the brain and spinal cord. Motor neurones are the nerve cells that control muscles, and their degeneration leads to weakness and wasting of the muscles.

This causes an increasing loss of mobility in the limbs and difficulties with speech, swallowing and breathing. There is currently no cure for the disease and around 110 people are newly diagnosed in Ireland every year. Over 300 people and their families are currently living with the disease.

A project led by assistant professor in clinical speech and language studies at TCD, Caroline Jagoe, and senior speech and language therapist in Beaumont Hospital, Lesley Doyle, is focusing on the concept of message banking.

This is when people record themselves speaking while they still have a good quality of speech, with the aim of using their own unique phrases if their speech quality deteriorates.

The speech and language therapists are developing a toolkit to guide other therapists and people with MND through the process of banking their own messages. These messages can then be used on electronic communication devices to help maintain a sense of identity.

"The way in which we communicate is key to how we portray our identity and connect with others. Preparing for a possible loss of speech abilities is very challenging for people with progressive communication disorders. It is our experience that people who decide to engage in message banking feel an increased sense of control and value the opportunity to capture aspects of their identity as they ‘bank' their unique ways of interacting with loved ones," Ms Jagoe explained.

She noted that one of the participants taking part in this project described the process perfectly.

"If you think about how you convey your personality, it's through your voice, your facial expression and your gestures and MND takes all of them away from you potentially. So if you can't move your facial muscles you can't express, and if you can't move your arms you can't gesture, and if you lose your voice you can't convey your sentiments. So at least having the message banking there you are trying to retain a small portion of that, rather than just a synthesised voice. You don't want to lose everything," the participant said.

The idea behind message banking is that the process of recording and then using their messages when needed, may help people to feel more in control and keep some sense of identity.

If speech quality deteriorates at a later stage, the person may decide to use an electronic communication device such as a tablet, that utilises software with built-in computer-generated voices. This will enable the person's ‘message bank', i.e. the recordings made in their own voice, to be used alongside the computer-generated voice.

This project is funded by Research Motor Neurone and is supported by consultant neurologist and MND expert, Prof Orla Hardiman. It will be highlighted at the TCD's free pop-up festival, PROBE: Research Uncovered, on Friday, September 30.

This event aims to explore some of the research that is helping to shape our world and will include talks, experiments and workshops. It will take place in TCD's Front Square and more details are available here