Posted on behalf of George Aynsley (Liverpool, UK):
A Medical Student’s First Conference…
The MND Association Symposium 2014 was a complete success. Spending my time in the clinical sessions, digesting the wealth of viewpoints from the array of speakers, I’ve realised just how complex and diverse ALS is. This meeting of an international community is imperative to approach the seemingly ceaseless obstacles that are present in ALS. The passion from the majority of speakers in the Copper Room was palpable making it enjoyable and engaging. The quality too was superb. In all, a great weekend in Brussels.
I will be discussing Assistive Technology, Care Practise and the End of Life discussion in my three posts.
One of the best sessions this conference was Assistive Technologies, covering topics of providing communication support equitably, brain painting, and voice reconstruction. I have to say that I have a penchant for speech and language therapy so I was looking forward to these talks.
Anna Reeves (from my hometown of Oldham) explained the problems faced by occupational therapists, speech and language therapists and teachers in tackling the many issues that arise from difficult communication. In the face of unequal distribution of resources, the main difficulty with ALS is its rapid progression. This leads to difficulty in the timely procurement of highly specialised services (training, therapists) and technologies. ALS makes up 5% of the use these services.
Augmentative technologies range from the more basic transparent communication square to the very high tech aids involving brain activation and voice banking. The communication square is plastic and has a hole in the middle. Around the hole on both sides (in Anna’s version) are groups of letters grouped by colour. The user looks through the hole at the other person and points with their eyes at letters to spell words. This was no easy task when I tried it out and it drives home the point of just how adaptable families have to become to continue to communicate. Human potential once again showing its versatility.
There are over 150 devices available to patients. This illustrates the complexity of individualising care. But in a field of non-stop evolution, Anna is adamant that the equipment itself is not the solution. The solution is one of allowing the person to use the equipment. An unequal allocation of resources means that people in need are burdened by difficulty in funding and accessing the required technology. Equity is paramount. The non-stop advancement of these devices is useless if patients cannot obtain them or the training and the therapists to use them.
Fortunately, £15 million has been procured from the UK government and this will be used to tackle the postcode lottery of services. The success of this venture could, hopefully, be used as a comparison in an international setting.
‘Brain Painting is Breakfast for the Soul’
This is from a participant in brain painting research and is definitely the best quote of the conference. Creativity is a vital aspect of our human mind and it gave me great pleasure to see that people who have lost the capability to put down their artistic creations into physical form now have an opportunity to do.
In this studio, the canvas is an EEG and the paint brush is a flashing Albert Einstein face.
Visit brainpainting.net to see the range of illustrations that can be produced. This technology improved the lives of the two participants who have become stranded within themselves.
Ultimately, interaction and feelings of control are fundamental aspects of life. Brain painting, in its abstract way, allows people to regain what is so important.
Dr Rewaj’s talk, due to technical misdemeanours, unfortunately had no sound. Audio examples were the fulcrum in this talk on voice reconstruction and Dr Rewaj took it all in stride, managing to illustrate her research succinctly.
The issue to be tackled in Augmentative and Alternative Communication (AAC) is the impersonable nature of synthetic voices. Users abandon their devices because they cannot identify with the artificial voice. After all, what do we convey with our voice? Emotion? Humour? Personality?
Subtly intonation conveys so much in how we interact and its loss is devastating.
Dr Rewaj’s methods involve blending around 20 donor voices with the same regional accent as the user. This allows for a more realistically appropriate voice. Technology like this will not be without issues but participants expressed a preference, as well describing it more intelligible and similar.
This is very encouraging. As a musician, I wonder whether the ability to reproduce song will be on the horizon.