SpeakOut_August2015_web1

BRANCH NEWS NORTHERN TERRITORY

“Yibina Ayakwa” – Loudly Talk

Michaela and Joyce doing voice exercises on the beach.

I FIRST BECAME aware of Machado- Joseph Disease (MJD) while flying on a twin-engine plane to Groote Eylandt for a site visit. Groote Eylandt archipelago is situated in the Northern Territory on the western side of the Gulf of Carpentaria, approximately 600km south-east of Darwin. The Warnindilyakwa people are the Traditional Owners of the Groote Eylandt archipelago region and are referred to by their language name, Anindilyakwa. My family moved to Groote Eylandt in January 2014 for my husband’s job, and because of my background and interest in rehabilitation, I joined the MJD foundation as a volunteer speech pathologist in April that year. MJD is an inherited, autosomal dominant disorder, which means each child of a person who carries the gene has a 50% chance of developing the disease. This progressive neurological disorder occurs due to a fault in a chromosome that causes the production of an abnormal protein. This protein causes nerve cells to die prematurely in the cerebellum. The mutation is typically expanded when it is passed to the next generation. This is known as the “anticipation effect” whereby the symptoms will

appear approximately 8–10 years earlier and are more severe with successive generations. The damage to the cerebellum initially causes muscular weakness and progresses over time to a total lack of voluntary control and very significant permanent physical disability, including dysphagia and dysarthria/anarthria. Progression to dependence occurs over 5 to 10 years and most people are wheelchair-bound and fully dependent for activities of daily living within 10–15 years of the first symptoms emerging. At this time, there is no known cure for MJD. Previously known as “Groote Eylandt Syndrome”, the effects of MJD have been known to the Aboriginal people of this region for at least four generations. Although it is impossible to predict the number of people who will develop MJD there are currently around 550 people alive today thought to be “at risk” of developing the disease across the Top End. I started this work, with a resounding interest in clients with MJD and the potential of regular speech therapy to

improve and/or maintain the speech and swallowing function of these patients. Weekly therapy focuses on breath support, voice projection and safe swallowing strategies. I am fortunate to work within a multidisciplinary team and our therapy is client-centered, holistic and functional. Sessions are often conducted “on country” (fishing at the beach, bush walking) which helps to keep clients engaged and ensures therapy techniques are meaningful. When we are at the beach and the wind is blowing and the waves are crashing, you definitely need to “yibina ayakwa” (loudly talk). professionally rewarding. It has taught me to acknowledge and respect the connection that indigenous Australians have to their families, their culture, their communities and their country. You can find out more about MJD and the MJD foundation at http://mjd.org.au Working with the MJD clients has been both personally and

MICHAELA JACKSON Speech Pathologist

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Speak Out August 2015

Speech Pathology Australia