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What is MND?

Motor neurone disease, amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease, is used to describe 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 will increase life expectancy by three to six months. The average time between diagnosis and death is two to three years, with very few people surviving more than five years. 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 follow, https://www.mnd.asn.au/understanding-mnd/what-is-mnd

MND Shared Care Worker

The 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 a 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

Office: 5622 6842
Mobile: 0417 100 286


Top Up Funding (TUF). Information for Palliative Care Services 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

Application and further information for this funding is on the MND Vic website – follow this link  https://www.mnd.asn.au/health-professionals/top-up-funding/community-palliative-care 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, at this link https://www.mnd.asn.au/health-professionals/top-up-funding/inpatient-palliative-care

Motor Neurone Disease Association of Victoria

265 Canterbury Road (PO Box 23) Canterbury 3126
Tel: (03) 9830 2122
Mobile: 0402 183 140 or
Freecall: 1800 806 632
Fax: (03) 9830 2228


Education Recordings

The MND education recording was facilitated by Chloe Cart, Speech Pathologist and Carol Barbeler, MND Shared Care Worker (Gippsland) and is relevant to registered and enrolled nurses, community and residential aged care workers, who care for people with MND.

Topics include:

  • Common communication challenges  in MND
  • Changes in swallowing, and strategies to optimise intake
  • Secretion management

Click in the image below to view the session


MND podcasts, provided by Robyn Reid,

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.

As well as listening to the podcasts, a transcript of each podcast can be downloaded for free and kept for your future reference.

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.

To listen, simply click on the title of the podcast below: