Speak Out October 2017

A PhD journey with Machado Joseph Disease

Northern Territory

Aboriginal people are the highest in the world, 100 times the global average. In other countries where the disease has a high prevalence, MJD has been declared a public health issue and legislative measures to address the cost and disadvantage of the disease have been implemented. In Australia, the typical response from health professionals and the general public is, ‘MJ what?’. “Around the world, people who experience progressive dysarthria with normal cognition have greatly benefited from the use of high-tech AAC devices. In Arnhem Land, mobile phones are now commonplace, but so too is sharing mobile devices between family members, limited access to the internet and low rates of English and computer literacy. In Arnhem Land, English has little relevance in day-to-day interactions, but most Yolngu understand and speak several related Yolngu languages, as well as using Yolngu Sign Language in daily interactions. “Might Aboriginal people in Arnhem Land be interested in high-tech AAC options when their speech becomes difficult to understand? What about other low-tech options? How could we develop AAC systems in Yolngu languages? Who are their primary communication partners and what’s important for Yolngu anyway? “These are some of the questions I’ve set out to explore. I get paid to learn and work in a field of speech pathology that I am passionate about. I get to design my own ways of working with amazing people – what a dream job!” Rebecca Amery

“I remember writing the final edits of my honours thesis in mid-2011 and thinking, ‘I am never doing research again’. But if a job opportunity doesn’t feel equal parts scary and exciting, it’s not really worth doing. So here I am, six years later and 11 months into a PhD. “I’ve always been interested in our role as speech pathologists in the bigger picture of communication and social justice. This PhD is an opportunity to bring all my passions together – to work alongside Yolngu (Aboriginal people of Northeast Arnhem Land); share knowledge; learn together in the spaces between two worlds and languages; talk about communication, what is important and the potential of AAC to change peoples lives. “Machado Joseph Disease (MJD), also known as Spinocerebellar Ataxia Type 3, is an autosomal dominant neurodegenerative disease. In Australia, MJD affects the lives of Aboriginal people in the Top End, Central Australia and some parts of Queensland. ‘Anticipation’, a phenomenon associated with MJD, causes successive generations to experience earlier onset and more severe symptoms than their parents. MJD causes damage to the cerebellum and results in ataxia. Cognition is not affected, but people with MJD slowly lose control and coordination of muscle, including progressive dysphagia and dysarthria, and eventually a complete loss of functional speech. “More than 600 people are at risk of inheriting MJD in the NT, with the number of people living with moderate and severe MJD expected to triple in the next 10 years. Rates of MJD among

NT 53 members as at September 2017

Speechie success at national awards

The speech pathology profession was well represented at this years’ Hesta awards. Northern Territory speech pathologist Annette Mikecz from SARRAH was selected to be a part of the National team that facilitated the awards process. She is pictured centre with Lauren Kovesy and Emma Burns who lead the team for the Austin Hospital’s Aphasia Integration Program. The team were recipients of the HESTA Primary Health Care Team Excellence Award. Read more about the program on page 37.

39

October 2017 www.speechpathologyaustralia.org.au

Speak Out