# 7-2022 Community Advisor News
4 March 2022
Kia ora koutou,
I hope you have been keeping well and that the slightly cooler weather is being more friendly to your MS.
Lots of information for you to sift through at your leisure with the obvious one being Covid so I will start with some useful information here – please see attachments too.
Covid 19 update
If you are following the Ministry of Health daily updates, the large numbers of positive cases can be rather alarming. However these numbers were expected, planned for and I hope everyone has prepared as best as possible. Most current information and resources can be found here:
https://covid19.govt.nz/?gclid=EAIaIQobChMI6u2dr_-j9gIVw5pmAh1kDwoGEAAYASAAEgLf6vD_BwE
FREE METLINK TRAVEL TO AND FROM VACCINATION APPOINTMENTS
Metlink is continuing to provide free travel on buses and trains to anyone getting their COVID-19 vaccination as part of a coordinated effort to boost attendance at vaccination centres and events across the region.
If using buses or trains is not an option, people can contact Metlink directly on 0800 801 700 to arrange community transport to and from your vaccination centre.
VIDEO RESOURCES – COVID at home and in the community series are made in partnership with Northland DHB and the MOH:
Make your breathing easier https://youtu.be/4AiC48mOTVY
Managing your COVID symptoms https://youtu.be/T-GyXR5wP_Y
When to seek medical advice https://youtu.be/_ATKrLHfoyU
How to isolate at home https://youtu.be/Afkncosk4C0
How to use a pulse oximeter https://youtu.be/HKC_bzHTGV8
How to do a Rapid antigen test (RAT) with Dr Api Talemaitoga https://www.stuff.co.nz/national/health/coronavirus/127886726/covid19-watch-how-to-do-a-rapid-antigen-test-yourself
Wellbeing and movement
Your wellbeing is more important now than ever. Listening to nature sounds is a good way to take some time out and destress. Either listen to the nature sounds outdoors, or you can find some soothing nature sounds here:
Nature Sounds | Soothe Yourself - YouTube
Via OMS, free access to a video collection from Veronique Gauthier-Simmons is available to celebrate Movement March. With a selection of Strengthening, Stretching, Relaxing and Yoga Therapy for MS, you can choose what’s right for you from sitting on a chair, mat or standing practice - all from the comfort of your own home. Access the video collection for March for free, using the promo code: Free4OMS:
Video collection subscription (momence.com)
There is also a good worksheet attached to this email “Switching on your relaxation response.” What ever works for you to find some quite and restorative space for you is so important. Watch this space as we are currently working with Diane Clark-Manley, yoga teacher, on a session just for people with MS in the Wellington region.
Education & research
If you want some further distraction or have time for education/upskilling the following options may be of interest:
FOR OUR SENIORS: Run by SeniorNet New Zealand, SeniorHangouts is a virtual learning centre that helps older New Zealanders move into the digital space with confidence. SeniorHangouts is a mobile and tablet application where members can access a range of technological courses that, helps people to navigate services like online banking, online shopping, government services such as IRD, and popular sites like Facebook Messenger, Netflix, YouTube and more.
seniorhangouts – SeniorNet in Your Pocket
FOR ANYONE: The University of Tasmania “Understanding MS” course opens again on 14 March 2022, a course that has had amazing reviews. This free course is particularly useful for people who have been recently diagnosed with MS. It aims to improve understanding and awareness of MS:
RESEARCH: In last month’s News we included a link to the Harvard Gazette that reported on research that indicates the Epstein Barr virus may be the leading cause of MS. This article from MS Australia looks a little wider than just Epstein Barr and is well worth a read: Hormones, EBV and genes: Uncovering the causes of MS - MS Australia
Stem cell Therapy
Overseas, Autologous Haemopoietic Stem cell Treatment (aHSCT) is having a profound effect on the lives of many people, particularly those with highly active Multiple Sclerosis. aHSCT is not intended to reverse the damage done, but it can restart the immune response and halt further progression. MSNZ has been advocating for aHSCT to be available in New Zealand since 2018 and now have the support of both Neurologists and Haematologists who are also keen that this treatment should be available in New Zealand. If you would like to support this treatment being available in New Zealand you can sign the petition:
Feedback from people who have had stem cell treatment overseas is needed
At present we have no accurate count as to how many people have been overseas for aHSCT treatment but we believe it is in the order of 100-150 people. Having an accurate number will support MSNZ’s continued advocacy work to get aHSCT available here in NZ for people with MS.
The NZ MS Research Trust have provided funding for a medical student to undertake a survey of people who have travelled overseas to have a bone marrow (stem cell / aHSCT) transplant for Multiple Sclerosis.
It goes without saying the more people who complete the survey the more useful the results will be. Further information can be found here:
https://www.msnz.org.nz/have-you-had-a-stem-cell-transplant-for-multiple-sclerosis/
Need a life changing challenge?
Whether you have sailed before or not, this is an opportunity not to be missed! The Oceans of Hope experience is a catalyst for creating lasting friendships and a sense of community.
Proposed New Zealand Income Insurance Scheme research project
As you have probably heard, the government has proposed an Income Insurance Scheme due to be operational by December 2023. ACC is set to administer the scheme. The scheme will offer 80% pay for 6 months to workers who are made redundant, or who experience illness or disability and can no longer work.
Because the scheme is yet to be designed, the researchers want to engage with people who have been made redundant or experienced reduced work capacity due to illness or disability to help inform the way the scheme is implemented. Participants will be asked to take part in a 30-minute interview over video or telephone call, to be scheduled during March 2022. Participants will be given a koha of an $80 voucher for their time. The researchers hope people’s participation can help bring worker voices and concerns to the forefront of the scheme design.
To be eligible, participants must have been made redundant or been incapacitated by illness or disability on or after July 25th 2021. This can pertain to full or part time work, migrant or seasonal work, and those with multiple jobs. They are particularly interested in speaking to:
- People over the age of 55
- People between the ages of 18 and 24
- People with caregiving responsibilities
- People who had a part time role or multiple part time roles
If you would be willing to talk about your experience with redundancy or reduced work capacity in the above context, you can contact:
- Mairead Shanahan | Senior Research Advisor | Mairead.shanahan2@acc.co.nz
- Freya Harrison | Research Advisor | Freya.harrison@acc.co.nz
It is understood these experiences can be hard to talk about, and every effort will be made to handle this situation with respect and care.
Need to talk to a MS Community Advisor?
Our service is still operating under phase 3 Omicron but is mostly ‘virtual’ so I can contact you by phone, email or video conferencing. It is taking a little longer for me to respond to people as I am covering Wellington and Porirua as well as Kapiti and the Hutt Valley at the moment. Please note that we do not provide an urgent or emergency service. If you need this level of service you can contact your GP, phone Healthline on 0800 611 116, visit your Emergency Department or phone 111 in the event of an emergency.
Take care and kia kaha.
Ngā mihi,
Gillian
Gillian Fry
Manager & Lead Community Advisor
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