EASING THE BURDEN WHILE SEARCHING FOR A CURE

This month hosts Motor Neurone Disease Awareness Week, a time when people living with the disease, those who have lost someone to it, carers, researchers, healthcare professionals and volunteers can come together and reflect on their journey.

It is also meant to express hope that one day there will be a turning point in the search for cause, treatment and cure of this disease.

Motor neurone disease (MND), also called amyotrophic lateral sclerosis or Lou Gehrig’s disease, is a rapidly progressing, fatal neurological disease.

Julie Labra, Motor Neurone Disease Service Co-ordinator at St Joseph’s Hospital Auburn, in Sydney’s west, is one of a team of 10 who works closely with other departments in the city’s Westmead and Concord hospitals.

The St Joseph’s MND Service (part of St Vincent’s Health Network Sydney) is one of five specialist MND healthcare services based in Sydney. It provides multidisciplinary person-centred care for the physical, social, emotional and spiritual impacts of the disease.

Ms Labra says MND affects nerve cells, meaning sufferers lose voluntary control of the muscles used for speaking, walking, swallowing, and breathing.

“There are more than 2000 cases in Australia, with the prognosis of two to three years after diagnosis,” she says. “There is no known cause, but it can be hereditary in less than 10 percent of cases.

“Symptoms include weakness of the arms and legs, or changes in speech. They may have difficulty making themselves understood, start to have trips or falls, or trouble feeding themselves.”

About 40% also have cognitive changes, and 5% have significant frontal lobe dementia.

“In severe cases, people may become quite disinhibited, have significant personality changes, or become aggressive and withdrawn,” Ms Labra says.

One of the biggest considerations with MND is the tremendous ripple effect it has, not only on the person living with the disease, but also on everyone surrounding them.

“Carers, families and friends face an incredible burden trying to care for a person living with MND at home,” she says.

“There is also a huge cost on the healthcare system in terms of the specialist healthcare, equipment, carer support and medication required.

“However, whilst we can’t cure MND, we can have a significant impact on the person’s quality of life, by way of symptom management, as well as measures to improve comfort and independence.”

St Joseph’s MND Service supports patients from the time of diagnosis to death, aiming along the way to lighten the burden and impacts of the disease in the patients’ home environment.

“One of our primary aims is to keep sufferers out of hospital, because their extremely high care needs mean that hospital admissions are often a very challenging experience for both the patient and family.

“In some cases though, the care needs become too great to manage at home and hospital admission is required, particularly towards end of life, which is when the support from the palliative care unit becomes essential.”

Ms Labra says while there is a concerted international search for the cause of the disease, as well as a number of drug trials that aim to slow its progression, so far there is only one drug in general use for MND, Riluzole, which may prolong survival by up to three months.

St Joseph’s works closely with leading MND researcher Professor Steve Vucic at Concord Repatriation General Public Hospital. Other leading Sydney-based researchers include Professor Dominic Rowe at Macquarie Neurology Private Hospital and Professor Matthew Kiernan at the Brain and Mind Institute Camperdown.

And Ms Labra says while COVID interfered with many drug trials and research projects, more are now emerging internationally and nationally, offering hope for better MND therapies and eventually a cure.

St Joseph’s is also about to embark on a new collaborative research initiative exploring access to specialist MND healthcare and the potential use of Telehealth for remote, rural and regional NSW (in collaboration with Concord Hospital, MND NSW and the University of Tasmania).

There are MND associations in each state that provide individualised support to people with MND, their family and friends. For more information visit the MND Australia website.

And if you’d like to help in fund the search for an MND cure, you can help by purchasing a Big Freeze 8 beanie at Coles, Coles Express and Bunning stores, with money raised going to FightMND, which funds ongoing MND research.