Dr Paul Brock AM
In late 1996 my entire world, and that of my wife and our two very young daughters, was turned upside down. Walking into a neurologist’s office with a weak and sore forearm, I emerged with a death sentence noosed around my neck. He told me that I probably had Motor Neurone Disease and, if so, my life expectancy was only between three and five years. His words still burn
in my memory today in 2013.
I had only the vaguest notion of what this Motor Neurone Disease (or MND) was, when I was diagnosed. Well, MND is an incurable, terminal disease rarely mentioned in the media – at least in those days. I think it is fair to say that in the decade since then I have made some contribution to increasing public awareness of MND. Typically, MND paralyses one’s arms, legs, swallowing and speaking muscles and eventually, if you live that long, you end up with a mind and a consciousness inside a body capable only of eyeblinking - before the breathing muscles give way, and you die.
I have attended the Motor Neuron Disease Clinic lead by Professor Dominic Rowe AM – initially at Royal North Shore Hospital and more recently at the Macquarie University Hospital – for a decade. My version of this dreadful, still incurable terminal disease has progressed more slowly than other phenotypes of MND. However, thanks to the magnificent support of my wife and children; the generous support of my employer, the NSW Department of Education and Communities; the quality of personal care provided by NSW HomeCare; the support provided by the MNDNSW; and the truly superb professional, personal, evidence-based researched clinical care provided by Professor Rowe – both individually and his clinic; I have been able to continue living as fully as I can and to continue to maintain my contribution to education through my role as Director of Learning and Development Research in the Office of the DirectorGeneral of the NSW Department of Education and Communities.
I am well aware of the research which demonstrates that people with MND who are able to access clinics such as the one established now at Macquarie Neurology, experience a greater quality and longevity of life than do those who do not have such access. I can certainly testify to the efficacy of this research, based on my own experience. Every major aspect of living with Motor Neurone Disease is covered within the Macquarie Neurology clinic. MND patients have the benefit of consulting with excellent specialists in, for example, neurology, thoracic medicine, speech pathology, physiotherapy, social and personal issues, physical assistance equipment, dietary requirements, and benefiting from the assistance provided by the MNDNSW representative who is present at all clinics.
In my former capacity as Vice-President of MNDNSW and prior to my ever having met Professor Rowe, I volunteered to review his clinic (then at RNSH) as part of the funding agreement arrangements then in place with MNDNSW. I was allowed to sit in on a couple of individual sessions – of course with the explicit permission of the MND patient – and later in the conference chaired by Professor Rowe at which all of the individual specialists shared their observations about every single patient, with the expressed purpose of identifying the best ways of assisting every patient and of helping to ensure that these recommendations were implemented. Given that patients who attend these clinics do not all come from Sydney, I was heartened to experience the commitment to providing extensive follow up communication with doctors and allied health professionals in both Sydney and other parts of NSW. I came away profoundly impressed by the outstanding professional and personal quality of the clinic’s operation in general, and Professor Rowe’s leadership in particular.
Dr Paul Brock AM
BA Hons. (USyd), PhD (UNE), Dip. Ed. (UNE), FACE, FACEL
Director, Learning and Development Research, Office of the Director-General, NSW Department of Education and Communities
Adjunct Professor, Faculty of Education and Social Work, The University of Sydney
Honorary Research Fellow, Faculty of the Professions, University of New England
Honorary Associate, The Centre for Values, Ethics and the Law in Medicine, Faculty of Medicine, The University of Sydney
Vice Patron, Motor Neurone Disease Association NSW