Support Group Info Support

Support Group Info Support

Information, Support and Resources

Bringing together resources and information that is easily accessible and in one place. This page is intended to be a one stop reference point giving you access to information and resources. The information on this page will be updated regularly.

Please send any feedback and suggestions for information and resources you would like included on this page to Cassie by email  supportgroups@parkinsonsnsw.org.au or by calling the Parkinson’s NSW office (02) 8051 1900

Join the dedicated Parkinson’s NSW Support Groups Facebook group – a closed group for all NSW Parkinson’s Support Groups to connect, share, converse and get to know each other.

Schedule for upcoming zoom sessions

View our video libary of past information sessions

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Support Group Operations Manual

The Support Group Operations Manual clarifies and standardises how Parkinson’s NSW and Support Groups can work together for mutual benefit. It includes guidelines for effective governance and legal compliance, along with all the information, contacts, tips and tools required to operate an effective, sustainable Parkinson’s Support Group. This Operations Manual content will be regularly updated.

Choose strong passwords

Some websites and all accounts for online applications require a log-in – a space provided where you must type in a password or code. For optimum security, choose a unique password that only you would know. Use special characters and symbols and consider using longer words strung together. Do not share your password information by email or social media and avoid entering your password unless you recognise the website you are visiting. Tips on choosing a strong password click here

Safe searching online

When searching for information, a company, product or person online, don’t simply use an address that someone has sent you.Instead, use Google to search for what you want. You don’t need to know a web address – Google is a widely used and trusted search engine that provides safe and trusted answers to any question you may have online.It can help you find products and services, order home deliveries, look up the latest news, and troubleshoot any technical issues you may face while online.

Oversharing on social media

Social media (for example Facebook) is intended for communicating with others but do be selective about the information you share. Personal information such as your passwords, account numbers, phone number, and address should never be shared on a public forum or with strangers online. Also be careful of anything you share about people you know. It is best to first ask them for permission to do so.

Smartphone settings for easy reading

 If you find that text size on the screen of your smartphone is too small, you can change your settings to increase the size and adjust the screen brightness. Find out how to change them here.

Links or attachments

Before you click on a link in an email or download an attachmentmake sure you confirm the identity of the sender.  If the email came from someone you know, it is likely safe to open the link or attachment. However, it’s always best to use caution when handling anything unknown on the internet.

Follow online etiquette

There are a few unspoken rules (there are so many pop-ups on that page, would it be better to list them here or should we add a section about not clicking on pop-ups?)that social media users follow. For example, writing with the caps lock turned on is generally interpreted as shouting. Emojis and other images can also have their own meanings, so it’s best to research an unknown symbol before using it on social media or any other website.

Add contacts to your smartphone

Your phone allows you to store saved contact information for your family and friends so you no longer have to type in or remember each person’s phone number.Read through your phone’s instructions on how to add a contact to your phone, whether you use an Android or an iPhone. Here’s how to add contacts to your Android phone. Here’s how to add contacts to your Apple iPhone

Email security

There are scammers (fraudsters) who send alluring emails to try to steal personal information. You can avoid these cyber criminals by choosing not to open or reply to any emails from people you don’t know. Remember: if something seems too good to be true, it probably is.Most Australian banks, insurance companies, online shops and other companies have a policy of not asking you to share personal information by email. So, if you receive an email pretending to be from your bank asking for your account number for example, it will not be a legitimate request.The same caution should apply to telephone calls supposedly coming from your bank, the Australian Tax Office, Centrelink, etc. They have a policy of not asking for personal details over the phone – particularly account numbers or passwords

Antivirus software

 If you don’t already have antivirus software installed on your computer, it is important to download and install it for your online safety. There are many free downloads available clicking here. These can protect your device from hackers or malicious viruses and software. A hacker is a person who tries to gain unauthorised access to your computer programs. A computer virus is a type of malicious code or program written to alter the way a computer operates. It is designed to spread from one computer to another. A virus operates by inserting or attaching itself to a legitimate program or document. In the process, a virus can cause damage such as harming the computer’s system software by corrupting or destroying data. Once you have installed antivirus tools, they run in the background on your computer. You don’t have to do anything more than occasionally update them. They will give you an automatic alert if they detect an issue, and they usually quarantine viruses so they cannot damage your computer or phone. You can then browse the internet while feeling a bit more secure.

How to stay in touch via video

If you are stuck at home, video-chatting can help you stay in touch with your fellow Support Group participants, friends and family.

This guide will show you how to make a video call using a smartphone (mobile phone), or receive one using your desktop or laptop computer.

If you are not confident with technology, ask a younger friend or relative to assist. Once set up, the applications we talk about here are very easy to use.

Parkinson’s NSW Support Group Coordinator is also available to assist. Their contact details are at the end of this article.

There are two types of operating systems used in smart phones and tablets: Android and Apple.

You don’t need to know anything in depth about smart phone software, but you do need to know in general what kind of phone you have – because they work slightly differently when it comes to video-chatting.

Examples of Android phone and tablet brands include Samsung, LG, Sony, Huawei and Google. (There are other brands, but these are the most common ones)

Apple brands include iPhone, iPad or Mac computers.

There are plenty of free applications you can use to make video calls including Google Duo, Facebook Messenger, Skype, WhatsApp and Zoom.

The first section of this guide will show you how to make a video call using WhatsApp.

WhatsApp uses mobile phone numbers to connect.

To video call a friend using WhatsApp, they will need to have installed the application as well – and you will need to add their phone number to your smart phone’s address book.

Click here for a step by step guide

Download Whatsapp for an Android phone here

Download WhatsApp for an Apple device here

When setting up your WhatsApp account you must provide your phone number and you will also be offered short-cut options such as linking with your Facebook account.

We recommend against that. Although options such as Facebook linking are simple, they are not secure.

For optimum online safety – and to protect your phone number from disclosure – it is best to set up your WhatsApp account using your email.

There are multiple steps involved but they are easy to follow. This video shows how click here

If you have an iPhone, iPad or Mac computer, you can video call using FaceTime.

This application comes pre-installed on all these Apple devices. However, it only works on Apple devices, so your friend or relative must be using an iPhone, iPad or Mac too.

Click here for a step by step guide

You can receive video calls on a desktop computer without installing any software. Some video-calling services such as Skype and Zoom will let you join a chat using your computer’s web browser.

To do this, you’ll need to be invited to a video call by a friend or relative who already has the software installed.

Ask them to follow the instructions in the video below, in order to send you an invite link by text message or email.

When creating a Zoom account, you will be offered the options of signing in via Facebook or Google.

As with WhatsApp (explained above), it is best to set up your Zoom account in email. Doing this provides an extra layer of online security.

See step by step instructions on how to do this here

Chris Fox, Technology Reporter, BBC Online, www.YouTube.com, Zoom, WhatsApp

Parkinson’s NSW can help you find the best option to stay connected with your Support Group. If you’d like to explore any of these solutions, contact Support Group Coordinator supportgroups@parkinsonsnsw.org.au

Guide to effective online support group meetings and chat groups

The online exchange of information and knowledge is fast becoming a valuable way for people to connect within communities, communicate and find support across many health issues and topics.

Using technology such as computers and smartphones comes with some risks. However, don’t fear or avoid technology – with common sense and some helpful tips, these risks can be managed to ensure your online safety.

Technology can open up new ways of communicating and having fun with your nearest and dearest – without being face-to-face.

Download the full guide and to explore the nine ways you can relate well with others, while protecting your privacy and guarding against scams (fraud) while online.

What makes and creates effective Parkinson’s support groups for people living in rural and regional areas of New South Wales (NSW)?

This research will explore the models of Parkinson’s support group leadership, what makes and creates an effective Parkinson’s support group from the perspective of people with Parkinson’s disease (PD), caregivers and support group leaders living in rural and regional New South Wales (NSW).

The study seeks to understand Parkinson’s support groups and the members who attend these groups.

Why is this research being done?

The need for support is a central part of living and dealing with the challenges Parkinson’s disease brings to an individual and the caregivers who live with them. This research study aims to explore the models of Parkinson’s support group leadership, and what makes and creates an effective Parkinson’s support group for people living in rural and regional areas of NSW.

Who can participate? If you are over 18 years of age and a person with Parkinson’s, a caregiver or a support group leader that has participated in a Parkinson’s support group within the last six (6) months, Vincent would like to speak with you about your experience.

A person living with Parkinson’s disease can participate in the study with or without their caregiver being involved or present.

What does the study involve? If you are interested in helping with this research, Vincent will contact you and arrange a convenient time to interview you about your experience.

A support person can attend the interview with you if you wish. If you have chosen to attend with a support person your information will not be confidential between you and Vincent as the person attending with you will be privy to the information. You can be assured Vincent will maintain confidentiality and the participant and their supporters will be encouraged to maintain confidentiality but Vincent cannot guarantee it.

Who is the researcher? My name is Vicent Carroll,  I am a Doctor of Philosophy (PhD) candidate at Charles Sturt University. I work as a Parkinson’s Clinical Nurse Consultant at the Mid North Coast Local Health District and  Parkinson’s NSW.

Interested? For more information please refer to the Participant Information Sheets below as they relate to you or contact Vincent Carroll via telephone 0401595795 or email vcarroll@csu.edu.au