Speak Out October 2017 LOW RES

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October 2017 Speak Out 39
Northern
Territory
NT 53
members
as at September 2017
“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
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
A PhD journey with
Machado Joseph Disease
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.
Speechie success at
national awards