During February and March, Parkinson’s NSW conducted a survey of Zoom online meeting participants to obtain feedback on desired topics and any areas for improvement.
Thank you to everyone who submitted feedback.
The results are now in and are summarised below.
Requested topics for future Zoom meetings
- My Aged Care – how to apply and access the online system.
- Stages of Parkinson’s
- The real-world experience of living with Parkinson’s.
- New medications for Parkinson’s
- Research updates
- Mental health aspects of Parkinson’s
- Advice on voice amplifiers that are chargeable.
- Freezing of gait
- Carer frustrations with service providers who do not understand Parkinson’s symptoms and do not listen.
- A guest speaker to talk about Advanced Care Plans and Wills (which is sometimes difficult to broach in small groups)
- Older people with more advanced Parkinson’s
- Gut challenges and how to overcome them.
- Speech pathology for Parkinson’s
- Diet for Parkinson’s
Other comments and areas for improvement
- Please provide two weeks’ notice of meetings, then a reminder one week ahead.
- Sitting for a long time is difficult.
- Technology issues make it difficult to participate.
- Meetings often conflict with my medical appointments.
- Would be beneficial if we could view meetings together as a Support Group.
- Guest speakers are invaluable.
- Good to hear other people’s strategies for dealing with Parkinson’s.
The future of Zoom meetings
Once a supplement for face-to-face meetings during the COVID-19 pandemic, Zoom online meetings have become a valued resource for many Support Groups.
They are a unique and useful way of gaining access to new resources – particularly advice from Parkinson’s Registered Nurses, Parkinson’s Specialist Nurses and experts from other organisations with knowledge of issues which are also related to Parkinson’s e.g. continence, carer stress, exercise, medications, legal matters, etc.
Therefore, Parkinson’s NSW will continue to deliver Zoom meetings according to schedules published in advance, in this newsletter.
Zoom schedules are also on the Parkinson’s NSW web site