What it is about?

Source: http://www.anindilyakwa.com.au/

This blog is based on a research project aimed at devising a multi-modal interface to improve social communications of Machado-Joseph Disease (MJD) affected people in Groote Elyandt which is an island in Gulf of Carpentaria in north-eastern Australia. Available assistive technologies and social networking tools will be analyzed and combined together to come-up with this platform. However, It is important to understand 'what is already out there' prior developing new communication technologies. 

MJD is known as a Spinocrebellar Ataxia which is charactarized mainly by incoordination of movement. Therefore, MJD patients are often locked to wheelchairs and sadly there is no cure to-date to counter-attack this. While there are research conducted in search of medical cures, it is extremely important to keep the standard of living of MJD affected people at high levels. MJD patient count in Groote Elyandt is 23 and 130 persons are at risk of being affected by MJD [2]. They might face more difficulties than the general population face because of lack of resources in a remote area.

Spinocrebellar Ataxia is one of the main branches of diseases caused by neurodegeneration where nerve cells are destroyed by the time that cannot be ever repaired again unlike other cells in human body [1]. Alzheimer’s disease, Parkinson’s disease and Prion disease are few of the other main types of neurodegenerative diseases. While there is limited literature on MJD, there is considerable amount of research done on Alzheimer’s disease and Parkinson’s disease. Therefore, looking at communication interventions for patients with such diseases may help the process of helping MJD affected persons in terms of improving social communications.

A main factor to keep in mind is that we are developing these communication mechanisms for culturally distinctive set of people who are living in a remote area of Australia which might lack infrastructure. However, after a thorough analysis of available technologies, it will be possible to adjust these technologies for this population to a considerable level.

Observations and interviews will be carried out with experts to understand the context prior developing any prototype by combining available assistive technologies and social networking tools. This prototype will be tested within a sample group in Brisbane, Australia to gauge the effectiveness and then will be deployed in Groote Elyandt. Feedback of the end users will be used to improve this prototype to acquire the maximum throughput.

Notes:

[1] EU Joint Programme – Neurodegenerative Disease Research (JPND). (2013). What is neurodegenerative disease? Retrieved July 4, 2013, from http://www.neurodegenerationresearch.eu/about/what/

[2] MJD Foundation. (2013). An overview of Machado Joseph disease and the MJD foundation. Retrieved from http://www.mjd.org.au/cms/file_library/Other/Other_299.pdf