'Frustrating and disappointing': Canberra residents with Parkinson's disease still campaigning for a specialist nurse
"When I'm off, I can't walk. I can't stand," she said.
The proud grandmother, retired midwife and keen cook was 58 when she was diagnosed with Parkinson's disease in 2016.
She booked in to see her GP and then a neurologist after noticing her walking had slowed, her voice had quietened and her handwriting had deteriorated.
Despite watching the same disease take its toll on her father, the diagnosis came as a shock.
"It was awful, I still get teary when I think about it — I just couldn't believe it," Ms Miragaya said.
Parkinson's disease is a progressive, degenerative, neurological condition that affects a person's nervous system and their ability to move.
It doesn't have a cure, but medication can ease the symptoms, which can include a tremor, stiffness, lack of balance and slurred speech.
For Ms Miragaya that was exactly the case, and she revels in running a monthly support group for women in Canberra with Parkinson's disease and singing weekly with the Bushlarks — a choir for people with the condition.
But over time her symptoms have become more severe and the efficacy of her medication has reduced.
Ms Miragaya is among those in the Parkinson's community who have long been campaigning for the ACT government to employ a specialist Parkinson's nurse who can visit patients at home.
Evidence shows specialist nurses who visit patients at home can significantly improve their quality of life, particularly by providing personalised care plans, medication adjustments and safety assessments.
They can also help a person to maintain their independence and delay their admission into full-time out-of-home care.
"At the moment I'm reasonably okay, but I won't be down the track," Ms Miragaya said.
"I will need additional support and assistance if I want to stay in my own home as independently as I can.
"And coming from a nursing background, I know how wonderful nurses can be and what they bring to a care team."
The community push for a nurse has been going on for a decade, with the first glimmer of hope given ahead of last October's ACT election.
It was then that Health Minister Rachel Stephen-Smith made an election commitment to expand the movement disorder centre within the Brindabella Day Service, including providing a specialist Parkinson's nurse who would work in the community.
For Marcia Kimball, who is the chair of Parkinson's ACT, it felt like the hard advocacy work was finally paying off.
But now, six months on from the election, she is frustrated the more than 3,000 Canberrans living with the disease are still waiting.
"It's very frustrating and disappointing for our community that we're still waiting."
Ms Kimball said the ACT was now the only jurisdiction in Australia where people with Parkinson's can't access a specialist nurse at home through the public health system.
"They have five nurses in South Australia and South Australia is probably three times our population," she said.
"All we're asking for is one, which we don't believe is even enough — it's not a lot of money in the scheme of things."
Ms Kimball's husband John was diagnosed with Parkinson's disease in 2008 after showing signs of rigidity, a slight tremor, apathy, and an overall slowing down.
He has been in full-time residential aged care since 2022.
Ms Kimball can't help but wonder how much longer her husband could have remained in the family home had he had access to home visits from a specialist nurse.
"With Parkinson's, there's a lack of mobility so it can be really hard on carers and the people living with the disease to go out to clinics.
"So, having someone come to you really is invaluable."
Ms Stephen-Smith said she was still committed to delivering on her election promise.
But when pressed for a timeline, the minister failed to provide one.
"Canberra Health Services is working to set up that model to ensure that we get it right and that means working with the community as well and recruiting the advance practice nurse to undertake that work," she said.
Ms Miragaya said she can't help but feel "discriminated against" by the lack of action.
"These are my people now — I'm a Parky — so to keep me well at home, I may need some additional supports and that may mean I need a nurse to come and assess my home, my safety, my ability to cook or clean or dress or shower," she said.
"Whatever I need, it should be readily available for me to access, but not if you've got Parkinson's."
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
ABC News
22 minutes ago
- ABC News
James Cook University suspends medical student after domestic violence assault
A Queensland university has suspended a medical student who pleaded guilty to a domestic violence attack. The student pleaded guilty in the Townsville Magistrates Court last week to assault occasioning bodily harm. He was sentenced to two years' probation and ordered to pay $500 compensation, with no conviction recorded. A James Cook University (JCU) spokesperson confirmed this morning that the student, who cannot be named for legal reasons, had been suspended. "[The university has] initiated a formal review of his suitability to continue in the medical program," they said. "We recognise this matter has caused deep concern, particularly among ... the health professions. "We acknowledge the distress this has caused, especially for those with lived experience of domestic and family violence, and reaffirm our commitment to upholding the highest standards of conduct in the training of future health professionals." The student's suspension follows an outcry from the community and medical community, calling on the university to take disciplinary action. Herbert MP Phil Thompson wrote to JCU chancellor, Professor Ngaire Brown, calling for the termination of the student's enrolment. "Surely a case in which a student has been sentenced for violently assaulting his former partner in a domestic violence incident … must be considered serious enough for termination," the letter said. The university's student code of conduct states that a student will not engage in unlawful behaviour; cause no harm to others, including students, staff, affiliates and volunteers; and will not endanger, or potentially endanger the safety or health of others. Townsville nurse and JCU alumna Emma Coppens wrote an open letter to the university after speaking with the victim, criticising the institution for allowing the student to continue their studies in the wake of the court action. "You are not just training doctors, you are shaping the kind of people entrusted with the health and safety of the public and supposed pillars of our community," she said. The JCU Medical Students' Association released a statement saying it was deeply disturbed by the reports. Queensland Australian Medical Association (AMA) president Nick Yim said while the AMA did not comment on individual matters, it was essential patients felt safe with their doctors. "Health professionals must be held to high standards and undergo rigorous assessment requirements before admission to practice," Dr Yim said. People seeking to be registered as a medical practitioner, including doctors, undergo a criminal history check. It covers convictions, pleas of guilt or findings of guilt by a court whether a conviction was recorded or not, charges for an offence and spent convictions. Queensland Police is yet to say whether it will seek an appeal of the sentence.
News.com.au
an hour ago
- News.com.au
Health Check: Audeara strives to be ‘the next Cochlear' in affordable hearing collab
Audeara and Ear Science Institute Australia will strive to develop a more affordable bone-conduction hearing device Auditor voices 'substantial doubt' over Universal Biosensors' viability Freeze a jolly good fellow: Brent Owens take over at cryopreserver Vitrafy Do we hear the next Cochlear (ASX:COH)? Hearing tech group Audeara has entered a project agreement with Ear Science Institute Australia (ESIA). This is to develop bone-conduction hearing tools for Australian high-need communities. ESIA contributes $100,000 and its considerable expertise. Bone conduction involves transmitting vibrations through the skull. This bypasses the eardrum and allows users to hear ambient sounds alongside audio. One target market is children who need help to hear in class, especially in regional areas. The WA-based ESIA has extensive experience in remote parts of the state – especially in indigenous communities – while remote teachers already use Audeara's headphones and buds. 'It's about finding a solution that can be delivered at scale, to enable access in cases where people don't have it,' Audeara CEO Dr James Fielding says. 'Also, if we can find a way that is a bit more consumer friendly then more people will use it." He says the problem is not necessarily hearing loss: the kids might have fluctuating hearing, speech processing disorder or an autism spectrum condition. 'It's really looking at how we can give kids the best chance of getting the information so they can learn from it.' The parties expect the project to kick off next month. Cochlear's Baha devices – as in bone-anchored hearing aid – cost around $10,000 locally. Strictly speaking, the $4 million market cap Audeara doesn't plan to challenge the $20 billion Cochlear any time soon. "But if we can be the next super partner of Cochlear that would appeal to me greatly,' Fielding says. Universal Biosensors is on the ropes Universal Biosensors (ASX:UBI) is fighting for its life. The company today reported half-year revenue of $2.2 million, down 11% and a $10.4 million loss compared with $7.23 million previously. (By dint of history, Universal is US domiciled and thus reports to the Securities and Exchange Commission.) Universal's June quarter deficit came in at $6.6 million, compared with a $3.72 million loss previously. The unflattering numbers prompted a stern 'substantial doubt' warning from auditor Price Waterhouse, which questions whether the company can continue as a going concern. 'The company has experienced recurring losses since its inception and has not generated any significant revenues,' says the notes to the accounts. 'The company has not generated significant revenues resulting in the net cash outflows and accumulated losses to date." The board forecasts "further cash outflows while growing the business over the coming period". Over time, Universal has accrued $113.6 million of losses. Management plans to fund the business by "growing revenue, pursuing joint venture or partnerships for its product portfolio, assets and raising cash through debt funding'. Related party loan to the rescue? On July 2, Universal signed a non-binding term sheet for a loan facility of up to $8.5 million, with substantial shareholder Viburnum Funds Pty Ltd. (Viburnum's Criag Coleman resigned from the board to avoid a conflict of interest.) The company said it also planned an equity raising. Subject to approval at a shareholder meeting on August 29, the 18-month facility has a 15% interest rate plus royalties. The facility is due to be finalised this Friday. Parlous financial state aside, Universal has applied its proprietary electro-chemical sensors in interesting ways. During the half, Universal derived most of its revenue from anti-coagulation human testing (Xprecia Prime) and a winery quality control tool (Sentia). The company has also developed a water pipe impurity sensor (Aquascout) and glucose monitoring for dogs and cats (Petrackr). Management says while no binding capital measures are in place, the company 'has successfully raised new equity capital in the past.' A change at the top no-one thaw coming A mere six months after the cryopreservation group's ASX listing, Vitrafy Life Sciences (ASX:VFY) CEO Kate Munnings will step down in favour of co-founder and deputy CEO Brent Owens. The former head of IVF provider Virtus Health, Munnings remains on the board. The company says its next stage would benefit from a 'leader with a deep knowledge of Vitrafy's cryopreservation technology, as well as the biotech sector'. As joint founder – and 2014 Masterchef winner to boot – we guess Owens ticks those boxes. Vitrafy is developing its cryopreservation hardware and Lifechain cloud-based management platform. This is for applications including cell and gene therapies, aquaculture (salmon breeding) and bovine reproduction. Vitrafy's US efforts centre on a collaboration with the US Army Institute of Surgical Research, which carried out a successful phase I study on blood platelet preservation. The project aims to improve the shelf-life of emergency blood platelets on the battlefield. More FDA turmoil … The turmoil at the US Food & Drug Administration (FDA) again has hit the headlines, with revelations of last-minute meddling in a drug-approval decision. On July 22, shares in the Nasdaq-listed Replimune group tumbled 77% after the agency issued a Complete Response Letter. This pertained to the company's proposed melanoma drug RP1. In effect, the FDA rejected the approval application in the late stages of the review process. According to the biotech newsletter Stat, internal FDA reviewers supported the therapy before a senior official stepped in. It's suggested that Replimune was caught in the crossfire of leadership changes, staff upheaval and internal dysfunction. The official was not biologics head Vinay Prasad. The Trump appointee last month was sent packing amid a shambolic episode involving the withdrawal and then reinstatement of Sarepta's Duchenne muscular dystrophy drug, Elevidys. America being America, both Replimune and Sarepta already are subject to shareholder class actions. … but Immutep's not complaining But our very own Immutep (ASX:IMM) has no complaints about the FDA's deportment. The oncology dug developer today said the agency delivered positive feedback on the company's proposed development of its first line treatment of recurrent/metastatic head and neck squamous cell carcinoma (HNSCC). Based on Immutep's clinical trial Tacti-003, the FDA concurs the company's drug candidate Efti should be evaluated in combo with the checkpoint inhibitor Keytruda. This paves way for a placebo-controlled registration trial, or a smaller single-arm study of 70 to 90 patients. Immutep chief Marc Voigt says the FDA's feedback highlights the unmet needs of the targeted group of HNSCC patients, who express low levels of the biomarker PD-L1. In the meantime, Immutep remains laser focused on its pivotal phase III lung cancer trial, Tacti-004.
SBS Australia
2 hours ago
- SBS Australia
Is Australian tap water safe to drink?
Water in Australia is treated and monitored to ensure it meets health and safety standards. The Australian Drinking Water Guidelines are the national standards which guide our water suppliers. In most parts of Australia, tap water is safe to drink, but smaller regional and remote communities face extra challenges. In Australia, where you live determines where your drinking water comes from—which can be from desalinated seawater, groundwater supplies or dams. In our cities and most regional towns, drinking water is supplied to homes via the water main network of underground waterpipes. Can we assume that water is safe to drink? 'Yes, in most parts of Australia tap water is safe to drink,' says Dr Emily Quek, Co-Chair of the Water Quality Specialist Network at the Australian Water Association. 'Our tap water is treated and monitored to meet strict health-based standards that consistently meets the Australian Drinking Water Guidelines, and water utilities also regularly test it to ensure it is safe.' Water quality researcher Professor Stuart Khan from the School of Civil Engineering at the University of Sydney agrees. 'Most of the time in most of Australia, the answer is unequivocally 'yes'. But safety is a relative term and there are certainly water supplies in Australia with significantly lower levels of safety than others,' Professor Khan says. The most challenging water supplies to keep safe tend to be those in smaller regional and remote communities. Professor Stuart Khan Remote areas often have less access to more sophisticated technologies for water treatment and quality monitoring, or people with proper training and skills to operate those technologies, Professor Khan says. What are the Australian Drinking Water Guidelines? These are the national standards which provide guidance to water suppliers to manage any risks to providing safe and reliable drinking water to communities. 'These Guidelines don't specify particular treatment processes for treating drinking water. The risk-based framework recognises that some water sources are inherently more, or less, vulnerable to contamination than others. So, the type and degree of treatment required to reach an acceptable level of safety varies from one supply to another,' Professor Khan explains. Water experts Dr Emily Quek and Professor Stuart Khan Credit: Emily Quek/Image supplied; Stuart Khan/Iain Bond How is our water treated? In Australia, water treatment processes typically include coagulation, filtration and chlorine disinfection. Coagulation is a chemical process that removes suspended particles and organic matter by causing them to clump together into larger, heavier particles which can then be easily removed through filtration. The process also reduces the risk of pathogenic microorganisms, such as bacteria and viruses. Your tap water has gone through a multiple barrier approach, including filtration and disinfection to remove harmful substances. 'Chlorine is added to most drinking water in Australia to kill germs and keep it safe. Fluoride is added in many areas to help prevent tooth decay. Both chemicals are safe and are used at low levels, within the limits of Australian Drinking Water Guidelines,' Dr Quek explains. And these water treatment measures are vitally important. 'Despite some concern in the community, drinking water fluoridation is well-established to be highly effective and an extremely safe practice,' Professor Khan says. 'Dissolved chlorine is very effective for 'killing', or inactivating, pathogenic microorganisms that would otherwise do us harm." Drinking water disinfection with chlorine has saved many millions of lives throughout the last century. Professor Stuart Khan Why does water quality and taste vary across Australia? Drinking water quality can vary even between our capital cities. This is partly due to the variation in water sources, Professor Khan explains. 'Some of these cities rely on groundwater, which can vary in mineral and salt composition. Some use water from lakes or dams and these can be affected by the growth of algae. Many of these cities supplement their drinking water with desalinated seawater, which is highly purified, but is also another source of variability.' Warragamba Dam provides drinking water for Sydney. Credit: Deeva Sood/Unsplash In regional areas, there are several factors which can influence local drinking water quality. 'In rural and remote areas, drinking water may come from a range of sources including bores, rivers, or rainwater tanks. The level of treatment and system resilience can vary depending on the local infrastructure, operational support, and environmental conditions,' Dr Quek says. There are also differences depending on whether the drinking water has been sourced from groundwater or surface water. 'Many remote communities rely on groundwater, and groundwater quality can be impacted by naturally occurring minerals, things such as calcium, magnesium, sodium, or in some cases, arsenic and uranium. It is important to understand what levels people may be exposed to, in order to understand the risks,' Professor Khan explains. 'Other communities rely on surface water, such as creeks and rivers, and water quality can fluctuate following rainfall and other local climate events.' What if environmental events are impacting your drinking water? Your local health authorities and water utilities will provide guidance. Boiling or filtering the water may be recommended as a precautionary measure when there is a known or suspected risk to water quality. Dr Emily Quek "So for example, following extreme weather events like flooding, or if there is concern that treatment barriers may not be fully effective,' Dr Quek explains. Prior to the 1980s, many houses in Australia were constructed using lead pipes or lead soldering in their plumbing. In these older buildings, the dissolution of lead from pipework into water is a relatively slow process and mostly occurs after water has been allowed to sit still in pipework for an extended period. 'If you're worried, let the tap run for a few seconds before using it, especially in the morning,' Dr Quek says. Flooding events can impact local drinking water supplies. Credit: Wes Warren/Unsplash What if you notice a change in your drinking water? 'You can contact your water supplier to express concerns. Does the water taste, smell, or look different? Are your concerns derived from illnesses within your household? Any information will assist the water supplier to diagnose and assess potential problems,' Professor Khan explains. You can find most water quality data, reports and test results online, so contact your local water supplier for guidance. For more information about drinking water in Australia visit: Water Quality Australia The Australian Water Association Subscribe to or follow the Australia Explained podcast for more valuable information and tips about settling into your new life in Australia. Do you have any questions or topic ideas? Send us an email to australiaexplained@
