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Time running out for researcher with motor neurone disease

Running out of time for university researcher with motor neurone disease

July 27, 2014

A terminally-ill University of Canterbury researcher is almost running out of time to complete her research before motor neurone disease takes over her life.

Professor Judith Duncan does not have long to live but is keen to carry out more early childhood education research.

She has two main research projects, completed last year, which she is madly trying to publish as well as responding to new concerns relating to early childhood education.

Her research projects are evaluating social support for infant and young children with developmental disabilities and their families to inform future policy and practice in Japan and New Zealand and active adult participation in early childhood education.

Each year, about 100 New Zealanders are diagnosed with motor neurone disease, a fatal degenerative illness that slowly robs people of the ability to carry-out simple, everyday tasks.

Professor Duncan has been funded by national teaching organisation Ako Aotearoa, in collaboration with the college of early childhood education and the national childcare association Te Tari, to examine critical thinking in initial teacher education for those helping young children.

``This research intent is to develop critical thinking in final year students something that we feel currently is under developed in our students.’’

Professor Duncan, who is able to respond to questions via email, was diagnosed with motor neurone disease last October. Her mind works well but not her speech which continues to deteriorate.

``The muscles that control my tongue and face have weakened so that I am unable to pronounce words or control my tongue. This produces other difficulties on top of speaking of course.

``I could hear myself slurring by the end of a two-hour lecture. By February I was unable to lecture any more. Both energy of my tongue and clarity, and now I can no longer be understood verbally at all.

``What I have noticed is that once I started to speak oddly people began to treat me differently. They would simplify their words and speak slowly, often bending into my face as though I had lost my hearing.

``The frustration at not being able to communicate clearly and being treated like I have lost my cognitive abilities is so hard. I like to announce, via my ipad, that I am a professor at the University of Canterbury and see the look on their faces.

``Several of the wheelchair taxi drivers, when they meet me for the first time, think I am a student and stare at me with disbelief when I tell them I am coming to campus to teach. The hardest thing about the disease is that cognition doesn’t alter. I am just trapped in a body that struggles to communicate this now. I am yelling in my head a lot these days.’’

Professor Duncan says early child education is vital to the future of New Zealand.

``Thinking about childcare is a hotly debated subject internationally. Childcare is often considered an issue only for families who have the immediate need for the care of their children. Once the children move to school, they face the struggle to find quality education and care that is affordable is forgotten as more pressing family needs take priority.

``Politicians find that this is a sector that can be easily forgotten also. Children don’t vote and parents move on. My suggestion is that childcare is easily forgotten because children are easily forgotten and a service that is only for children.

``Kindergartens and childcare centres are essential places for communities and families. We have convincing international research that demonstrates that childcare services can and do help families develop supportive relationships and networks that become the glue that holds society together.’’

Professor Duncan says the disease is progressing faster than hoped. She doesn’t rest as much as she should because she is focused on getting her research out while her hands are still functioning but time is running out.

``I can no longer begin something alone as I need others to be there to finish the writing off if I can’t. I am fortunate that I have these others to work alongside me. Everyone has to decide what is important to them in their last months.

``But don't leave your bucket list till you know you’re dying. It’s too late then. I guess I’ve asked for help and this has increased my quality of life tremendously and although I may have shortened my time I have kept doing what makes me happy and satisfied.’’

Professor Duncan’s work was hugely impacted by the earthquakes. All her archives and research data were trapped in a building for more than nine months. She had to cancel overseas conferences and speaking engagements to be with her family without her data or publications. She could not carry out research for over 12 months as she couldn't leave her home and family.

``But the university’s College of Education has been very supportive. They have recognised the important contribution I can still make despite my disability and have continued to employ me, make physical alterations to help me still come to campus and my colleagues have been happy to change the way and times they work to include me as much as is possible.

``I feel truly fortunate to be able to keep working which has kept confidence in myself alive and got my writing out and about to make a difference for early years education.’’

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