Motor Neurone Disease and other Neuro-Degenerative Disorders
Motor Neurone Disease (MND), also known as amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease, describes a group of diseases in which damage to motor neurones occurs. Motor neurones are nerve cells that control the movement of muscles that are under conscious control. These include all the muscles of the trunk and limbs and of speech and swallowing. Without activation, muscles gradually weaken and waste, resulting in paralysis. The initial symptoms of MND may be weakness in the hands or feet, swallowing difficulties or slurred speech. Muscle twitching and/or cramps may also occur. In the majority of cases the senses and intellect are not affected.
Each person with MND is affected differently in terms of their initial symptoms, the rate and pattern of disease progression and the length of time to death. There are no remissions and there is no cure. Some medications may increase life expectancy by several months. The average time between diagnosis and death is two to three years, with very few people surviving more than five years. The progression of MND is rapid, quickly creating high levels of disability and the consequent need for support, including assistance with feeding, communication, movement, transferring, toileting, and other personal care activities. MND has an impact on all activities of daily living ( from DHHS Interim report on the MND Pathway Project, 2015)
For more information visit the MND Victoria website.
MND Shared Care Worker
The unpredictable and often rapid progression of MND means that the level of disability changes over months rather than years. Healthcare professionals who are unaccustomed to managing MND may not recognise the significance of progressive symptoms. This can lead to unnecessary hardship for those with the condition. This speed of progression creates problems of adjustment for people who have MND, the escalating burden on carers and families and the challenges faced by service providers and their staff who are charged with meeting the variable and complex care needs.
The Victorian Department of Health and Human Services funds an MND Shared Care Worker in each region to provide support and education to palliative care services and residential aged care facilities, and other service providers, on a palliative approach and care of a person with MND.
In the Gippsland region, the MND Shared Care Worker is:
Carol Barbeler
Palliative Aged Care and Disability Resource Nurse and MND Shared Care Worker (Gippsland)
Gippsland Region Palliative Care Consortium
C/O Cottage 4, West Gippsland Healthcare Group
Warragul
Office: 5622 6842
Mobile: 0435 823 008
Carol.barbeler@wghg.com.au
Top Up Funding (TUF), information for Palliative Care Service and Health Services
The Community Top Up Funding (TUF) requests are made to MND Vic by Community Palliative Care Services, to enable people living with MND to access equipment, services, events, or activity that can be seen to enhance their quality of life. Funding for the request should not be available from another funding source. Equipment should not be funded from this source.
A request for up to $2000 per 12 month period is available per client.
A few examples of activities/events that have previously been funded include large screen TV /Foxtel subscript; additional massage sessions; short holiday; family reunion; clothes drier; a platform pet bed with steps so a client’s little dog could still sleep beside him when he needed to move from his double bed into a single hospital bed; attractive feminine bed linen for a lady confined to bed and receiving visitors; and room heating/cooling.
For application and further information for this funding visit the MND Victoria website.
For clients with MND who come into the inpatient setting for specifically “palliation or palliative care” (not necessarily terminal care), please see the explanation for funding application for additional support on the MND Victoria website.
MND Associations
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Unit 6, 2 Phipps Close, Deakin ACT 2600
Tel: (MND Australia) +61 2 8287 4980
Tel: (MND Research Australia) +61 2 8287 4989
Email: nfo@mndaustralia.org.au
Web: https://www.mndaustralia.org.au/ -
MNDRA supports high-quality MND research to discover the causes, improve care and find treatments and ultimately a cure for MND.
Unit 6, 2 Phipps Close, Deakin ACT 2600
Tel: (MND Research Australia) +61 2 8287 4989
Website: https://www.mndaustralia.org.au/research
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265 Canterbury Road (PO Box 23) Canterbury Victoria 3126
Tel: (03) 9830 2122
Mobile: 0402 183 140 or
Freecall: 1800 806 632
Fax: (03) 9830 2228
Website: https://www.mnd.asn.au
Professional Development
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MND Victoria provides a range of professional development opportunities including:
Annual health professional webinar programs
Free introductory MND webinars for health professional service providers
Free introductory MND webinars for support workers
Free education for Aged Care Facilities providing care for a resident affected by MND
Bespoke webinars and face-to-face training for organisations
Click here to be directed to the MND Victoria website.
Recorded Education and Webinars
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The Assistive Technologies used to Support People with Motor Neurone Disease (MND) recorded education was delivered by Jessica Moller, Community Occupational Therapist at Gippsland Lakes Complete Health in October 2020.
It is relevant to registered and enrolled nurses, and community and residential aged care workers, who care for people with MND.
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The Communication, Swallowing and Secretion Management in MND recorded education was delivered by Chloe Carter, Speech Pathologist at West Gippsland Healthcare Group and Carol Barbeler, MND Shared Care Worker (Gippsland) in August 2020.
It is relevant to registered and enrolled nurses, and community and residential aged care workers, who care for people with MND.
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The Management of NIV in MND & Elective Withdrawal of Ventilation webinar was hosted by the Centre for Palliative Care and was delivered by three different health professionals with specialities in Neurology, Respiratory Medicine and Palliative Medicine.
This webinar addresses the care of people with MND in the inpatient setting, progression of the disease, palliative care, and NIV management and withdrawal discussions.
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The Physiotherapist support for people with MND recorded education was delivered by Una McLeod, Physiotherapist at Gippsland Southern Health Service in June 2022.
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Presented by Lauren Gordon, Social Worker, Gippsland Regional Palliative Care Consultancy Service. This session covers topics including: Psychosocial considerations for people with MND and their families, understanding the patient/residents wishes, Grief and Bereavement, Supporting those around you and Helpful/Unhelpful responses after a death
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This webinar presented by Dr Indra Jayasinghe, Dual specialist in general medicine and palliative care with interest in neuro-palliative care, Calvary Bethleham and St John of God and Dr Sarah Lee, Neurologist, Calvary Bethleham, discusses Palliative Care for people of MND.
Webinar recording and powerpoint presentations are available upon request to GRPCC.enquiries@wghg.com.au or by calling 03 5623 0684
Resources
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This package, developed by Southern Metro Palliative Care Consortium, provides information about relevant aspects of MND. It includes contact details for further help and information. The example care plan is designed to be a prompt for the types of issues that should be included in a comprehensive care plan.
Click here to download the Information Package
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The Motor Neurone Disease (MND) Information for the Palliative Care Team booklet, developed by Southern Metro Region Palliative Care Consortium (SMRPCC), is designed with summary information to help them care for people with MND and their carers. It includes contact details for further help and information.
Click here to view the Motor Neurone Disease (MND) Information for the Palliative Care Team booklet
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Click here to be directed to the MND Australia website
Podcasts
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Robyn Reid, MND Shared Care Worker in the Southern Metro Region has produced a number of podcasts on MND and the various aspects of its management. If you work in aged care or primary health and have a client with MND, these podcasts will help you to better understand the illness and improve your care.
Topics include:
#1 –Presentation, diagnosis and clinical decision-making.
#2 –Secretion management and dysphagia.
#3 –Respiration and Non-Invasive Ventilation.
#4 –Frontotemporal dementia in MND.
#5 –Communication in MND.
#6 –Carers of people with MND.
#7 –Sexuality, MND and palliative care.
#8 –Maintaining hope.As well as listening to the podcasts, a transcript of each podcast can be downloaded from the Southern Metro Region Palliative Care Consortium website and kept for your future reference.