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      • For health and community care professionals
        • Al-Chahabi and Hardiman 2013 The epidemiology of ALS: a conspiracy of genes, environment and time
        • Andersen et al. 2007 Good practice in the management of amyotrophic lateral sclerosis: clinical guidelines. An evidence-based review with good practice points. EALSC Working Group
        • Andersen et al. 2012 EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) - revised report of an EFNS task force
        • Aoun et al. 2016 Breaking the news of a diagnosis of motor neurone disease: A national survey of neurologists' perspectives
        • Aoun et al. 2017 Family carers experiences of receiving the news of a diagnosis of motor neurone disease
        • Aoun et al. 2016 Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better?
        • Ashworth et al. 2012 Treatment for spasticity in amyotrophic lateral sclerosis/motor neuron disease
        • Aoun et al. 2012 A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions
        • Averill et al. 2007 Psychological health in patients with amyotrophic lateral sclerosis
        • Baldinger et al. 2012 Treatment for cramps in amyotrophic lateral sclerosis/motor neuron disease
        • Beauverd et al. 2012 Recombinant human insulin-like growth factor I (rhIGF-I) for the treatment of amyotrophic lateral sclerosis/motor neuron disease
        • Benatar et al. 2009 Treatment for familial amyotrophic lateral sclerosis/motor neuron disease
        • Berlowitz et al. 2013 Identifying who will benefit from non-invasive ventilation in amyotrophic lateral sclerosis/motor neurone disease in a clinical cohort
        • Berlowitz et al. 2016 Identifying who will benefit from non-invasive ventilation in amyotrophic lateral sclerosis motor neurone disease in a clinical cohort
        • Bloomer et al. 2011 End of life care: The importance of advance care planning.
        • Bongioanni et al. 2004 (updated 2009) Neurotrophic factor (CNTF) for amyotrophic lateral sclerosis/motor neuron disease
        • Borasio and Voltz 2006 'Advance directives' in 'Palliative Care in Amyotrophic Lateral Sclerosis from Diagnosis to Bereavement'
        • Brettschneider et al. 2013 Drug therapy for pain in amyotrophic lateral sclerosis or motor neuron disease
        • Carers Australia 2010 Supporting family carers
        • CareSearch
        • Caring Safely at Home
        • Chio et al. 2009 Prognostic factors in ALS: A critical review
        • Clayton et al. 2007 Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers
        • Cox et al. 2007 Pathogenesis of motor neurone disease
        • Dalbello-Haas and Florence 2013 Therapeutic exercise for people with amyotrophic lateral sclerosis or motor neuron disease
        • Fang et al. 2013 Repetitive transcranial magnetic stimulation for the treatment of amyotrophic lateral sclerosis or motor neuron disease.
        • Gallagher and Monroe 2006 Psychosocial care
        • Hardiman 2007 Multidisciplinary care in motor neurone disease
        • Heffernan et al. 2006 Management of respiration in MND/ALS patients: an evidence based review
        • Hudson et al. Clinical Practice Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients
        • Katzberg et al. 2011 Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease
        • Kiernan et al. 2011 Amyotrophic Lateral Sclerosis - Review Article
        • Kinnersley et al. 2007
        • Lambert 2006 Spiritual care
        • Lillo and Hodges 2009 Frontotemporal dementia and motor neurone disease: overlapping clinic-pathological disorders
        • McCabe and O'Connor 2010 Economic impact of neurological illness on well-being
        • McLeod and Clarke 2007 A review of psychosocial aspects of motor neurone disease
        • McMurray and Harris 2006 Bereavement
        • Merrilees et al. 2010 Cognitive and behavioral challenges in caring for people with frontotemporal dementia and amyotrophic lateral sclerosis
        • Miller et al. 2012 Riluzole for amyotrophic lateral sclerosis ALS/motor neuron disease MND
        • Miller et al. 2009a Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies
        • Miller et al. 2009b Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, cognitive/behavioral impairment
        • Miller et al. 2013 Quality improvement in neurology: Amyotrophic lateral sclerosis quality measures
        • Mitchell et al. 2008 Multidisciplinary care planning and teamwork in primary care
        • Mitsumoto et al. 2005 Promoting excellence in end-of-life care in ALS
        • MND Association, 2011, 'Multidisciplinary team working: a best practice guide'
        • MND Australia 2014 Motor neurone disease aspects of care: for the primary health care team
        • MND Australia 2010 Motor neurone disease aspects of care: for staff of residential care facilities
        • Mockford et al. 2006 A review: carers, MND and service provision
        • MND Australia 2017 Motor neurone disease aspects of care: for the primary health care team
        • Murphy 2004 Communication strategies of people with ALS and their partners
        • Murray and McKenzie 2007 Respiratory function in motor neurone disease
        • National End of Life Care Programme, 2010, Improving end of life care in neurological disease a framework for implementation
        • National Institute for Health and Care Excellence 2016 NICE: Guideline on MND Management
        • National Institute for Health and Clinical Excellence 2001 NICE: Guidance on the use of riluzole (Rilutek) for the treatment of motor neurone disease
        • National Institute for Health and Clinical Excellence 2010 NICE: The use of non-invasive ventilation in the management of motor neurone disease
        • Ng et al. 2009 Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease
        • Ng et al. 2015 Symptomatic treatments for amyotrophic lateral sclerosis/motor neuron disease
        • Oliver et al. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease.
        • Orrell 2010 Motor neuron disease: systematic reviews of treatment for ALS and SMA
        • Orrell et al. 2007 Antioxidant treatment for amyotrophic lateral sclerosis/motor neuron disease
        • OT Australia 2010
        • Palliative Care and Neurological Conditions Position Statement 2014
        • Palliative Care Australia 2008 Carers and end of life: position statement
        • Pastula et al. 2012 Creatine for Amyotrophic Lateral Sclerosis/Motor Neuron Disease
        • Physiotherapy Practice Research in Motor Neurone Disease
        • Radunovic et al. 2013 Mechanical ventilation for amyotrophic lateral sclerosis/motor neuron disease
        • Rafiq et al. 2012, Respiratory management of motor neurone disease: a review of current practice and new developments
        • Ramirez et al. 2008 Fatigue in amyotrophic lateral sclerosis: frequency and associated factors
        • Ravits et al. 2013 Deciphering amyotrophic lateral sclerosis: What phenotype, neuropathology and genetics are telling us about pathogenesis
        • Rudnicki et al. 2015 Symptom management and end of life care
        • Sackett B and Sakel M, 2011, Motor Neurone Disease - A Patient's Journey
        • Stavroulakis et al. 2013, Gastrostomy use in motor neurone disease (MND): A review, meta-analysis and survey of current practice
        • Stem Cell Treatments - A Quick Guide for Medical Practitioners
        • Stone and O'Leary 2009 Systematic review of the effectiveness of botulinum toxin or radiotherapy for sialorrhea in patients with amyotrophic lateral sclerosis
        • Strong et al. 2009 Consensus criteria for the diagnosis of frontotemporal cognitive and behavioural syndromes in amyotrophic lateral sclerosis
        • Tai et al. 2008 A review of emerging access technologies for individuals with severe motor impairments
        • Talman et al. 2009 Clinical phenotypes and natural progression for motor neuron disease: analysis from an Australian database
        • Talman et al. 2016 Identification and outcomes of clinical phenotypes in amyotrophic lateral sclerosis/motor neuron disease: Australian Motor Neuron Disease observational cohort
        • Tomik and Guiloff 2010 Dysarthria in amyotrophic lateral sclerosis: a review
        • Turner and Al-Chalabi 2007 Clinical phenotypes
        • Turner et al. 2013 Controversies and priorities in Amyotrophic Lateral Sclerosis
        • Vrijsen et al. 2013 Non-invasive ventilation in amyotrophic lateral sclerosis
        • Vucic et al. 2007 Diagnosis of motor neurone disease
        • Young et al. 2011 Treatment for Sialorrhea (excessive saliva) in people with motor neuron disease/amyotrophic lateral sclerosis (review)
        • Zoing 2007 Motor neurone disease: a nurse's perspective
      • For people living with MND
        • Breathing and MND: an introduction - for people living with MND
        • Breathing and MND: medications and non-invasive ventilation - for people living with MND
        • Breathing and MND: what you can do - for people living with MND
        • Carers Kit MND NSW 2007
        • Cognitive and behaviour change in MND
        • Considering gastrostomy - for people living with MND
        • Familial MND and genetic testing - for people living with MND
        • Insomnia MND Vic 2010
        • MND Evidence-based interventions: an overview - for people living with MND
        • Motor Neurone Disease: More Facts - for people living with MND
        • Motor Neurone Disease: Some Facts - for people living with MND
        • Multidisciplinary care: an overview - for people living with MND
        • Multidisciplinary care teams: an overview - for people living with MND
        • Planning Ahead - for people living with MND
        • Riluzole: an overview - for people living with MND
        • Talking with young people about mnd
        • Stem Cell Treatments - Frequently Asked Questions
      • General
        • BBC Radio 4 - Interview with Jane Hawking
        • Contacting your local MND Association
        • Deloitte Access Economics Report 2015 - Economic Analysis of MND in Australia
        • MND Australia 2009 Response to NHHRC interim report - A Healthier Future for all Australians
        • Listening to Janet
        • MND Models of Care
        • MND Patient Rehabilitation Pathway, Neuropalliative Rehabilitation Model of Care
        • Podcast - Dr Amanda Piper, Ask the Experts, Breathing Under Pressure
        • Podcast - Professor Dominic Rowe, Ask the Experts, About MND
        • Podcast - Dr James Burrell, Ask the Experts, What's New in MND Research
        • Statement of good practice for the management of ALS/MND
        • Victorian Government Department of Human Services 2008 Motor neurone disease and palliative care - Interim report on the MND Pathway Project - April 2008
        • Visit the MND Australia website
        • Vodcast - Interview with Dr Peter Martin: Breaking Bad News
        • Vodcast - Interview with Rod Harris: Motor Neurone Disease (MND) and palliative care
        • Tony Judt on having MND
        • Sprituality at End of Life - 2011
        • Zora's Story
        • ABC 7.30 - Familial MND
        • The Last Word: Matt Eustace
        • Understanding the National Relay Service
        • Healthtalkonline
        • Non Invasive Ventilation Training Videos
        • Steve's Story
        • ALS TDI postcards from around the world
        • Motor neurone disease neck collars
        • Science With Chris Smith - RN Breakfast
      • ALS/MND conference presentations
        • 22nd Meeting of the International Alliance of ALS/MND Associations
        • 7th National MND Conference
        • 8th National MND Conference, Melbourne 12 September 2016
        • Ask the Experts December 2016, Dublin
        • MND Connect 2016
        • Ask the Experts, Brussels 2014
        • 25th International Symposium on ALS/MND
        • Allcroft, P. 2012, 'Palliative approach to symptom management in motor neurone disease'
        • Allied Professionals Forum 2012
        • Allied Professionals Forum 2013
        • Allied Professionals Forum 2014
        • ALS TDI Leadership Summit 2013
        • Ask the Experts 2015 - MND NSW
        • Ask the Experts 2011
        • Ask the Experts 2013 MND NSW
        • Baldock, R. 2012, Motor Neurone Disease - Assess, Support, Communicate Project (MND-ASC)
        • Bentley, B. 2012, 'Dignity therapy’s ability to enhance the end of life for people with MND, their families: preliminary results from the dignity therapy/MND study
        • Brennan, F. 2010. 'A palliative approach to MND'
        • Brown, H. 2012, 'Health Pathways: advocacy and innovative service delivery in Motor Neurone Disease'
        • Burrell, J. 2012, 'Cognition in Motor Neurone Disease: The new frontier'
        • Craig, Sue.2012 'There's nothing you don't go through'
        • Dickie, B. 2012, 'Research Today: Implications for Tomorrow'
        • Hogden, A. 2012, 'What influences patients decision-making in MND care?'
        • Jessop, A. 2012, 'Where there’s a Will there’s a Way'
        • Kelly, E. 2012, 'Together we make a difference: multidisciplinary team planning meetings for people living with MND'
        • Lechtzin, N. 2012, 'Diaphragm Pacing in ALS: Turbulent or Transformative'
        • Love, A. 2012, 'Communications technology for people with MND: Current picture and future directions'
        • Miles, K. 2012, 'MND: Living and Caring in the Moment. Coordinating, Anticipating, Responding through an Interdisciplinary Palliative Care Team Approach in Country SA'
        • Erjavic, S. 2010. ‘An Overview of MND’
        • Oliver, D. 2010 'Patients with Cognitive Change - the challenge for families and professionals'
        • Oliver, D. 2010 'Withdrawal of non-invasive ventilation - how can we help all involved?'
        • Schultz, D, 2012, 'Australian Motor Neuron Disease Registry: An Update'
        • Shaw, P. 2012, 'NIV in ALS/MND: Where are we now and where are we going?'
        • Turner, B. 2012, 'Why we can't yet cure MND and what we are doing about it'
        • Wolfe, L. 2012, 'Airway Clearance (AC): Options and Strategies'
        • Wolfe, L. 2010. 'Respiratory update in ALS'
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Overview > MNDcare approach > Information and discussion > General > Steve's Story
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Steve's Story.pdf

Steve's Story

A short YouTube video created by the MND Association of England, Wales and Northern Ireland conveys the hope and residual quality of life that can be experienced by people with severely progressed MND with the best possible care, set up and equipment

www.youtube.com/watch?v=Sgilr0cI5jw

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