Voice banking: "Being able to keep this aspect of one’s individuality and identity is vital"
Updated: Jul 6
Predictable 6, is the new text to speech programme for patients that have lost the ability to speak. The new programme is a huge improvement on Predictable 5 and an essential communication tool for MND patients.
MND – WHAT IS IT?
MND is a progressive neurological condition that attacks the motor neurones, or nerves in the brain and spinal cord. This means messages gradually stop reaching the muscles, which leads to weakness and wasting. MND is a devastating disease, as it progressively attacks the body. MND can affect how you walk, talk, eat and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely that they will all develop at the same time, or in any specific order. MND strikes people of all ages and currently there is no cure.
It is a rare disease that generally affects adults. Most people with MND are aged 40 years or older, but occasionally people in their 20s and 30’s develop MND. In Ireland approximately 140 people are diagnosed with MND each year and there are about 360 people living with the disease at present, which means that the average patient survival time is only 30 months after diagnosis. The nature of the disease is that it affects different people in different ways.
I suspected that I was developing MND in September 2018. Initial test results were attributed to old motorcycle and car racing injuries to my cervical vertebrae. More tests were conducted between September and December 2018. I was diagnosed with MND by Professor Orla Hardiman in December 2018. I was not surprised or shocked when Professor Hardiman diagnosed MND, I already knew that all the symptoms and tests results pointed to MND, yet it was not what I wanted to hear. My instinctive reaction was to discuss, how quick is it likely to be- ie, how long have I got to live and what can be done to slow it down.
Following the MND diagnosis I was advised that I would lose the ability to speak. I commenced banking my voice in January 2019 with ModelTalker. Voice banking involves recording a list of 1600 sentences into a computer. When enough recordings have been captured, software chops them up into individual sounds (phonetic units). A synthetic voice is then built out of these phonetic units. I banked my voice in English on ModelTalker and French on Cerevoice. “This was very important for me because a voice is a very personal thing and being able to keep this aspect of one’s individuality and identity is vital, I now use my iPhone or iPad for communication so I’m not totally isolated. I type what I want to say into Predictable, which is the interface between the user and ModelTalker, on my iPhone or iPad. Predictable then uses my ModelTalker voice to speak. Predictable Version 6 is the new text to speech APP that replaces Predictable 5. My contribution to Predictable 6 commenced in March 2020 when I commenced testing the app as it was being developed by TherapyBox. I identified parameters that should be enhanced, modified, or included to improve the product from a user’s perspective. I also notified TherapyBox when the product crashed as new software updates were being installed. I have WhatsApp and email groups so that I can keep in regular contact with friends and I use FaceTime and ZOOM and other video conference programmes. They work best if I have someone with me so we can more easily keep the flow of conversation going, otherwise there is a lag period whilst I am typing. I am fortunate that my wife Caroline supports me 24/7 and our daughters Kirsten and Naomi and husbands John and Mathew and our six grandchildren keep in constant contact by WhatsApp, Facetime and Zoom.
There is an urgent need for research to categorise the different forms of MND and then to develop therapies that are type specific.
“TRICAL , https://www.tricals.org/pharma is the new European association of MND researchers which aims to co-ordinate research projects, with the objective of developing new therapies so that every MND patient qualifies for participation in clinical trial. “The ultimate objective is to develop a cure for this dreadful disease and to give hope to those who develop MND, however, funding is required to achieve this. Research needs people’s support. Research Motor neurone urgently needs funds to finance research projects to find a cure.
Dr Noel T. Kavanagh, M.V.B., D.P.M., M.A.E., D.E.C.P.H.M., F.R.C.V.S.