Our general election campaign for 2015 is featured around communication because we believe that nobody should have to lose their voice to MND. The afternoon session on Friday 5 December during the 25th International Symposium on ALS/MND also focussed on this topic.
Around 80-95% of people living with MND will face communication problems as their speech deteriorates. Through local and national campaigning we can give people living with MND a voice; be it signing the MND Charter or by influencing the 2015 general election campaign.
Augmentative and Alternative Communication (AAC) technology is an emerging field of rapidly expanding technology, which has a real impact on people’s lives. Anna Reeves from The ACE Centre, UK gave the opening talk on low and high tech devices, whilst explaining what’s happening in the UK.
She explained that twenty years ago there were just five types of communication aids. Today, there are over 200, giving the user a huge array of choice. Some examples of low-tech devices include eye spelling and speaking boards, which are very simple but effective for people who are not familiar with technology. Whereas more high-tech devices include tablets and the eye gaze systems.
This means there is a great deal of ‘choice’ out there, which can be really confusing. Anna explained that she is in the process of creating an online database, which enables you to search using a variety of fields, to find the right communication device for you. Anna said: “All these AAC devices are a bit like a sweet shop saying – look at all these things that can change your life! However, the equipment alone is not the solution, it’s using the right device that’s best for you that is.”
AAC in the England
Communication is fundamentally important, especially to people with MND. However, in England, getting access to the right equipment at the right time can be challenging. This is why Anna has identified and engaged with key politicians with a personal interest in communication, including the Prime Minister, David Cameron.
Anna said: “Engaging with politicians was key for us moving forward. But, there’s still a way to go – we’ve got the funding but now we need to implement it, getting all our services working together. Over time we will evaluate the AAC referral service to ensure equity across the country, so that everyone living with MND gets the AAC tech they need!”
Brain Computer Interfaces
Dr Andrea Kubler from Germany presented her research on brain computer interfaces (BCI) and their role as communication devices in MND. BCI works by early stage active involvement by the user, allowing the computer to process their brain activity to perform tasks.
Dr Kubler said: “The key point of Brain-Computer Interfaces (BCI) is that they can be used to interact with the computer and the environment via the brain. This means that no muscles are involved, making it an ideal tool for people living with MND to communicate with.
“We have trialled our BCI in people living with MND who are in an advanced ‘locked-in-state’ and have found that, not only can they control the BCI, but by providing people living with MND with a BCI and something meaningful, this can improve and create a good quality of life.”
The final presentation of the AAC session was from Association-funded researcher Dr Phillipa Rewaj (University of Edinburgh). Dr Rewaj explained that people unwilling to accept a non-individualised voice was the main reason for AAC abandonment, and the voice banking project aims to address this (find out more about the voice banking project here).
The bank has 740 donor voices, which can be ‘mixed’ to create an individualised voice. This means that the researchers can build a voice after just a short 15 minute recording session using what is known as the ‘voice cloning tool kit!’
Dr Rewaj said: “We have used voice banking on 55 people living with MND in Scotland, and have already received feedback from 15 of these. We have received some extremely positive feedback and all said that they preferred their individual voice to already existing AAC programmed voices.”
Dr Reeves concluded: “Having been involved in the field of AAC for many years I have experienced the impact of enabling communication for people with MND who have had no voice. As technology evolves to enable access to communication, we all have a duty to ensure that everyone who can benefit from these technologies is empowered to do so.”
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