Mar. 10, 2020
Parkinson’s Victoria is closely monitoring the coronavirus (COVID-19) situation as it develops in Victoria. The information on this page was updated on 13 May 2020.
COVID-19 Update: 13 May 2020
Families and friends to reunite as social restrictions ease
Parkinson’s Victoria has welcomed the lifting of some restrictions allowing family and friends to visit, but has reminded people to remain vigilant and maintain social distancing and hygiene controls to continue to prevent the spread of COVID-19.
Effective from 11.59pm on Tuesday 12 May, Victorians are able to visit family and friends in small numbers – up to five in our homes and up to 10 in public open places.
“This is good news,” said Parkinson’s Victoria CEO Emma Collin.
“The ability to re-connect, face-to-face with family and friends, will relieve the impact of isolation and enable many in our Parkinson’s community to once again reunite with important support networks,” she said.
However, just as the Victorian Premier Daniel Andrews said it was important to remain vigilant, this approach is also supported by Parkinson’s Victoria.
“While we still have the virus in our community, it’s important to be aware that if a person with Parkinson’s contracts COVID-19, they are at risk of experiencing more severe symptoms. This is even more so for people with Atypical Parkinson’s,” she said.
Parkinson’s Victoria encourages people to re-connect with family and close friends, but recommends against hugging loved ones at this stage. Social distancing and established hygiene practices should be maintained.
As the recent situation with a Melbourne meatworks showed, clusters can grow quickly if not contained.
“We remain committed to reducing the risk of exposure to the virus in order to protect the most vulnerable members of our community,” Emma said.
“As such, we have decided to continue to postpone all face-to-face activities until at least the end of June and have strongly advised all Peer Support Group leaders to also refrain from re-commencing face-to-face meetings until they can be deemed safe to do so.
“We are working with PSG leaders and participants to ensure these meetings can run safely in the future. We are not there yet but will continue to work with the State Government and our community to this aim.”
Unable to undertake scheduled visits around Victoria since mid-March, the Parkinson’s Victoria team has instead been conducting an outreach program to Life Members, in addition to the established inbound health information service.
Almost 300 calls have been made to these life members to check in on their well-being; a friendly and re-assuring voice at the end of the phone to see how they are going and remind them of the support that is available.
“From the outset, our main priority has been to remain connected to our community; to adapt our offering to ensure people living with Parkinson’s, as well as their families and carers, can continue to tap into the vital support, information and care we provide,” Emma said.
If you need to talk to someone about COVID-19 and your Parkinson’s, call our Health Information phoneline on 1800 644 189.
Aged Care visitor Code released
The Industry Code for Visiting Residential Aged Care Homes during COVID-19 has been released, creating a nationally consistent approach that ensures residents can receive visitors while minimising the risk of spreading COVID-19.
The Code was finalised after public consultation with both consumers and aged care providers. It cements a human rights approach to care that both protects and respects aged care residents and their visitors. The Code acknowledges the work that providers and staff are doing to keep people safe during the pandemic.
COVID-19 Update: 8 May 2020
Hear it from the doctors
As COVID-19 continues to impact the world, there are a growing number of resources being developed to help people navigate their way through the restrictions and resulting anxiety.
This includes information specifically for people with Parkinson’s and Atypical Parkinson’s. The following two videos feature some of the leading medical practitioners in Parkinson’s and progressive supranuclear palsy (PSP)
Lawrence I. Golbe, MD, is a neurologist in New Jersey, and one of the world’s leading clinical experts in progressive supranuclear palsy (PSP) and related neurodegenerative conditions. In this Cure PSP Ask the Doctor video, he talks about PSP and COVID-19. Watch the video.
Dr. Soania Mathur is a Canadian-based physician, patient and Parkinson’s Advocate. She asked three prominent physicians who caring for the Parkinson's community, Dr. Michael Okun, Dr. Bas Bloem and Dr. Daniel Weintraub , for tips and words of advice to help people navigate this challenging time. Watch the video.
Exercise at home
Since the COVID-19 social restrictions came into place, it has become evident that one of the major concerns for many people with Parkinson’s is the impact on ability to engage in exercise.
Physical activity is increasingly shown to positively impact people with Parkinson’s, not only physically but it can improve mental health. Unfortunately, the coronavirus restrictions put a halt to group activities and classes.
It’s important to try to maintain exercise routines and physical activity as much as possible. People with Parkinson’s, particularly those with more advanced symptoms, need to be cautious when choosing to do exercise. Read more about exercise options to try at home.
COVID-19 Update: 5 May 2020
A Walk in the Park to go online
Parkinson’s Victoria has made the difficult decision to change the direction of A Walk in the Park for 2020. The Melbourne walk was scheduled for Sunday 23 August.
All indications are that social distancing is going to be with us for a while yet, particularly for large gatherings. So, for the safety of our community and everyone involved, we are unable to deliver the much anticipated walk this year.
Parkinson’s Victoria is aware many people hold A Walk in the Park close to their heart, as a special day that provides people living with Parkinson’s the chance to connect with each other, and their family and friends, to celebrate and commemorate.
We also know that during these challenging times, it’s more important now than ever to unite our community. So we have committed to provide a new, virtual online community event for the Parkinson's Community in 2020.
Full details will be provided over coming weeks. Keep an eye on our website and join our Facebook page for further announcements and updates.
Not everyone in our community has the ability to connect online. This can leave them more isolated during these challenging times of stage three restrictions and ongoing social distancing measures.
The Parkinson’s Victoria team has reached out to hundreds of our members via telephone to check on their welfare and to offer a hand of support.
Four key themes have become clear from these conversations: the impact of anxiety, fear around ongoing access to medications, limited ability to stay mobile and the importance of support networks including family, GPs, Neurologists and Parkinson's Victoria.
As we continue to make these outreach calls, we are also working to provide information and services to alleviate these concerns
Aged care visitor restrictions
A draft Visitor Access Code to ensure a nationally consistent visitation policy to residential aged care homes during the COVID-19 crisis was released on 1 May 2020 by peak aged care and consumer advocacy organisations for public consultation.
The Code aims to apply a compassionate and consistent visitor policy that continues to minimise the risk of COVID-19 while providing innovative on-site visiting solutions to maintain the mental health of residents.
Consultation is open until 3pm Thursday 7 May and it is envisaged the code will be finalised by Monday 11 May 2020.
Read more about the draft code and how to comment on it.
A webinar on the draft code will be held on Wednesday 6 May for aged care residents, families and friends.
The draft code came after the Prime Minister last month called on aged care providers not to impose harsher visitor rules than those recommended by health experts, saying it was not “acceptable, fair or compassionate” for any residential aged care facility to ban visits from carers and friends.
This clear advice was welcomed by Parkinson’s Victoria, which has experienced calls to its Health Information phone service indicating that some facilities had gone into ‘lockdown’ and woul not allow visitors.
“We appreciate the need to balance service delivery and safety with the needs of residents,” said Parkinson’s Victoria CEO Emma Collin.
“However, separation can be extremely distressing to all parties, particularly for the person in care who may not fully understand why their loved one is no longer visiting them.
“This distress can impact condition and worsen symptoms. We also know some carers schedule their visits help ensure Parkinson’s patients receive their medication on time, which is crucial to symptom management.”
Anyone experiencing issues with aged care visitor access can contact our Health Team on 1800 644 189 for advice and assistance.
COVID-19 and Atypical Parkinson’s
People living with Atypical Parkinson’s can be particularly vulnerable to COVID-19 symptoms, particularly those with more advanced symptoms affecting swallowing and coughing up secretions.
We have updated information our website with information and support services available to assist people with Atypical Parkinson’s and their carers at this time.
Prof. Bas Bloem writes on COVID-19
Dutch neurologist, Prof. Bas Bloem, who spoke at Parkinson’s Victoria Smart Health in November, has co-authored an article looking into the impacts and opportunities of COVID-19 to people with Parkinson’s.
The article, The Impact of the COVID-19 Pandemic on Parkinson’s Disease: Hidden Sorrows and Emerging Opportunities, says an increased risk of chronic psychological stress, which can worsen motor symptoms, while reducing the efficacy of dopaminergic medication, is one of the ‘hidden sorrows’.
They noted another hidden consequence being a marked reduction in physical activities, which may contribute further to psychological stress – with the plus side being the emergence of web-based exercise initiatives.
However, Prof Bloem and co-author Dr Rick Helmich wrote the current crisis also offered research opportunities, including to better understand the factors that contribute to resilience in Parkinson’s patients.
COVID-19 Update: 30 March 2020
The latest changes announced by the Prime Minister Scott Morrison last night (Sunday) relevant to people living with Parkinson’s.
Have you got an upcoming GP or specialist medical appointment?
Effective from 8am today (30 March), the Australian Government has expanded Medicare-subsidised telehealth services to provide continued access to essential primary health services during the COVID-19 pandemic. This means you will be able to access bulk-billed telehealth consultations and not have to pay any out-of-pocket costs.
Among the services included are GP services and some consultation services provided by other medical specialists, nurse practitioners, mental health treatment, chronic disease management, services to patients in aged care facilities and after-hours consultations.
Health Minister Greg Hunt said expanding consultation services available by telehealth would limit unnecessary exposure of patients and health professionals to COVID-19, wherever treatment can be safely delivered by phone or videoconferencing.
At the same time, the Government has also taken measures to ensure medical practices stay open to provide face-to-face services essential for patients with conditions that can’t be treated through telehealth.
“One of things we don’t want to see during this pandemic is a reduction in services and support for people living with chronic health conditions such as Parkinson’s,” said Parkinson’s Victoria CEO Emma Collin.
“We welcome the move and new measures put in place to make sure people living with Parkinson’s can continue to access the care and medical services they need during this challenging time,” she said.
Contact your doctor or medical specialist to discuss the most appropriate course of care for you in light of this latest update.
Stay at home advice
People aged over 70 years and those with a chronic illness aged over 60 years, have now been “strongly advised” to self-isolate at home as much as practical to limit their interaction with others for their own protection.
This does not mean you cannot go outside. Instead the advice is to go outside accompanied by a support person for the purposes of getting some fresh air or for recreation, but to limit contact with others as much as possible.
If you do not have a support person who is able to help you with grocery shopping, you should contact your local MP, council or community organisation, such as Neighbourhood House, many of which are coordinating volunteer shoppers.
Check with your local pharmacy regarding medication deliveries.
If you need to talk to someone about how the changes are impacting you, or need information or advice on where to get assistance, remember, we are here to help.
Call our phone information line on 1800 644 189. Our phone is manned 9am – 5pm Monday to Friday. Leave a message after hours and we will return your call.
COVID-19 Update: 24 March 2020
Parkinson’s Victoria office changes
In line with Government advice to close non-essential services to reduce the risk of coronavirus spread, Parkinson’s Victoria has temporarily closed its Surrey Hills office, effective today Tuesday 24 March 2020.
However, we remain open for business, with staff working remotely to ensure continuation of service provision.
“The safety and well-being of our community and team is priority. While we provide an essential service, it’s one that can be effectively provided via our phone and online service,” said Parkinson’s Victoria CEO Emma Collin.
She said people could be assured that the advice and information Parkinson’s Victoria is known for is still available over the phone and online.
“The Parkinson’s Victoria team have been able to boost our phone and online service for people living with Parkinson’s and their families at this challenging time,” Emma said.
The health team consists of experienced allied health professionals, including Parkinson’s nurses, speech pathologist and occupational therapist. They can also provide contact details of other medical and health professionals experienced in Parkinson’s if required.
“Even though you have to change the way you live your life at the moment, what hasn’t changed is our commitment to support Victorians living with Parkinson’s to make sure they have all the information they need, even though the coronavirus pandemic,” Emma said.
People with Parkinson’s are particularly vulnerable to experiencing more severe symptoms if they are struck down with coronavirus, so should stay home as much as possible and follow Government guidelines in relation to social distancing when in contact with other people.
Parkinson’s Victoria is in contact with the State Government and monitoring the latest Government advice daily. Updates will be posted on our website and Facebook page.
Our phone information service is available from 9am – 5pm, Monday to Friday 9am – 5pm. Messages can be left after hours and will be returned the next business day. You can also email us, email@example.com
COVID-19 Update: 16 March 2020
InSearch lectures cancelled
Parkinson’s Victoria has made the difficult decision to cancel and postpone all community events and seminars until mid-May, including the 2020 InSearch research lectures in Echuca, Melbourne and Horsham.
“Over the past few days, there has been a significant shift in concern over the coronavirus (COVID-19) in Victoria, culminating with the Victorian Premier Daniel Andrews declaring a state of emergency this morning” said Parkinson’s Victoria CEO Emma Collin.
“It is incumbent on us to make sure the risk of exposure is reduced for those who are vulnerable; who have been shown to have the most severe response to the virus and that will include some members of the Parkinson’s community,” Emma said.
Parkinson’s Recently Diagnosed Seminars in Ballarat, Melbourne and Swan Hill have also been cancelled.
Parkinson’s Victoria is directly contacting everyone already booked and impacted by the decision, and is arranging refunds for those who purchased tickets.
Given the number of people impacted, this could take several days. We ask that people be patient.
We are also working closely with Parkinson’s Peer Support Group leaders around the cancellation of PSG meetings and gatherings between now and 15 May 2020.
“The decision to cancel PSG meetings and associated activities has been difficult given people may feel more isolated than ever, but given the potential impact of COVID-19 on people living with Parkinson’s, this is a cautious but needed response,” Emma said.
“I want to assure our community that Parkinson’s Victoria remains by your side to provide timely and effective ongoing advice, with increased service and support to be offered over the phone during this challenging time,” she said.
The Parkinson’s Victoria health information line is manned on weekdays from 9am – 5pm. Messages can be left after hours.
Parkinson’s Victoria will re-assess the situation next month, after which we will provide a further update for events scheduled post-15 May 2020.
INSIGHT 2020 is going ahead
INSIGHT into Parkinson’s is a free online conference to empower people with Parkinson’s. This event is not attended in person but is watched on a personal computer from the comfort and safety of the home.
Parkinson’s Victoria has sponsored INSIGHT 2020 and is proud to help make this online global conference, with 60 speakers scheduled to present between 1-3 April, accessible and free for people living with Parkinson’s.
During this period, when Parkinson’s Victoria is unable to host face-to-face information and education events, INSIGHT 2020 provides access to quality information to increase understanding of Parkinson’s and build people’s capacity to better self-manage their condition.
As part of our Parkinson’s Victoria community, a 30% discount on the upgrade package is also available. Just enter the discount code - InsightPV20.
Visit the INSIGHT website for information on speakers and how to register.
Parkinson’s Victoria thanks everyone for their understanding and urges anyone with concerns or questions to call us on 1800 644 189 or via email, firstname.lastname@example.org
COVID-19 Update: 10 March 2020
The health, safety and well-being of our community is our priority.
A person living with Parkinson’s has no increased risk of contracting COVID-19. However, this disease has been shown to pose a greater risk of severity to those aged over 60 years, with an underlying health condition.
For this reason, we recommend you follow the current Government advice on sensible precautions around hygiene and travel restrictions.
If you have any queries around COVID-19 and your Parkinson’s, call our Health Team on 1800 644 189.
For medical advice, contact your GP.
We will regularly update this message as the situation progresses. Last updated 13 May 2020.