May 6, 2014

Open day opens hearts and minds to Motor Neurone Disease

Researchers and the people they hope to help joined forces this week to raise awareness for Motor Neurone Disease (MND) at a research open day hosted by the Illawarra Health and Medical Research Institute (IHMRI).

The open day was part of national MND Week and the University of Wollongong-based IHMRI hosted people with MND, local support group members, clinicians, representatives from MND Australia, and others eager to address MND, a progressive, terminal neurological disease with no known cure or effective treatment.

IHMRI researcher Dr Justin Yerbury said the open day was a chance for the normally closed and mysterious doors of the laboratory to be open to the public and importantly to those living with MND.

“It also gives a glimmer of hope and an understanding of what research is about to those people living with MND.

“At the same time it allows us as researchers to see the face of, and to reconnect with, people living with MND - given that our work is mostly looking down a microscope at cells living in a dish. It allows us to remember our priorities in research and why it is we do what we do.”

Each day in Australia two people die from MND and two more people are diagnosed. People with MND lose the use of their limbs and ability to speak, swallow and breathe, while their minds and senses usually remain intact. The average life expectancy is only 27 months. Research is the key to understanding the disease and its progression.

Attendees heard from Dr Yerbury, whose research has been published in prestigious international journals and Dr Lezanne Ooi, who recently won a large National Health and Medical Research Council grant to study neurodegeneration.

Wollongong resident and UOW alumna, Louise Pearson was diagnosed with MND in June 2007 at the age of just 36, but has been able to continue working as a clinical psychologist and living independently for the last seven years.

She said she was “one of the fortunate ones”.

“I have been able to maintain my independence and quality of life because of the support of wonderful family, friends, neighbours and colleagues as well as the support of local services such as speech and occupational therapy, nursing, the regional adviser from MND NSW and community options,” she said.

“On a day-to-day basis I require support travelling to and from work, dressing and showering, preparing meals, toileting, shopping and other tasks. I have had to purchase specialist equipment such as a motorised wheelchair, an adjustable bed and recliner lift chair.

“I also spend many hours inside my own head thinking ahead and planning what I’m going to do, how I'm going to do it, and when. This is one of the lesser known impacts of MND and other chronic illnesses and disabilities and one of the most exhausting.”

While Louise considers herself fortunate she, like many people living with MND, is curious about the cause of the disease and ultimately how to treat or cure it.

“My plan has always been to hang around long enough for these and other questions to be answered, but that cannot be done without the dedicated work of researchers such as Dr Yerbury as well as other research programs currently operating nationally and worldwide.”

During MND Week (4 – 10 May), state MND associations work together to raise awareness, acknowledge the MND community and to remember those who have died from the illness.

Advocates and supporters will be asked to sign a ‘five rights petition’ as a way of telling parliamentarians that all Australians living with MND should have access to the right care, in the right place, at the right time.

MND Australia National Executive Director Carol Birks urged the community to support the rights of people living with MND by signing the online petition.

“I will present a list of supporters’ names to key parliamentarians along with the message that the National Disability Insurance Scheme (NDIS) needs to be a fair system for all people living with MND. The more people who sign, the louder our voice.”

More: mndaust.asn.au and ihmri.uow.edu.au