# 9-2022 Community Advisor News
6 May 2022
Kia ora koutou,
I hope you are all keeping safe and well. We certainly have been experiencing some beautiful autumn weather in the Wellington region which makes life a little easier. It is encouraging to see the COVID case numbers coming down but it’s still out there, so once again we will start this update with the Elephant in the room! There are some wonderful resources in this update that cover research, stress, mind and body. Also, support us to support you, by buying an Entertainment guide online and included, is a very warm welcome to attend our AGM on Saturday 21 May.
COVID-19 update
Recovery can take a while
It is not uncommon to experience COVID-19 symptoms for up to four weeks after an initial infection. These symptoms are the normal response of your body fighting a viral infection. If you are experiencing continued symptoms it is important to take things easy, pace yourself and rest until you recover. Some people may experience long COVID. This will mean that symptoms will linger for longer than four weeks. Long lasting symptoms does not automatically mean you have long COVID, however, if you have concerns it is important to contact your GP. The Health Navigator is an excellent source of information about long COVID. The website https://www.covid19wellingtonregion.health.nz/isolation-care/recovering-from-covid-19/ is dedicated to COVID-19 and includes a number of recovery resources and information sheets to support our community in their recovery.
Covid-19 anti-viral medication for people with MS on Fingolimod or Ocrelizumab treatments
If you have tested positive for COVID-19 and your symptoms started in the past 5 days and you are on Fingolimod or Ocrelizumab for your MS, you may be eligible for antiviral medication to treat COVID-19. Your GP can prescribe this for you. The antiviral drug available in the community to treat COVID-19 is called Paxlovid (nirmatrelvir with ritonavir). Paxlovid is an oral antiviral medicine used to treat mild to moderate COVID-19. It stops the virus multiplying in your body. It contains two different medications (two different tablets), nirmatrelvir to block virus replication, and ritonavir to slow the breakdown of nirmatrelvir. Evidence suggests that it is effective against COVID-19, including Omicron. Treatment with Paxlovid is recommended to be started within 5 days of first symptoms. Due to available supply, treatment will be targeted to those people with the highest health need and those most likely to benefit from treatment. Your doctor will need to confirm that you meet certain criteria before they can prescribe Paxlovid for you.
Disability and Accessible COVID Contact Numbers
If you have a disability, there are a number of other accessible ways for you to contact the Disability Strategy team, if you have concerns.
Capital and Coast and Hutt Valley DHB Disability Helpline
0800 829 935 - Contact this number if you have any isolation support needs currently unmet by the regular support team
TEXT 8988 for Deaf or Hard of Hearing
Ministry of Health has established a text help line for Deaf and Hard of Hearing, Please text if you are needing support during isolation.
Wellington Region COVID-19 Disability Survey
The Disability Strategy Team is acutely aware of the developing situation in the community regarding support during isolation, but they need your help to capture the full scope of need for people with disabilities. Below is a link to a survey regarding whether or not people have received support during their time in isolation after testing positive for COVID-19.
Wellington Region COVID-19 Disability survey (surveymonkey.com)
Admitted to hospital with COVID-19?
Have you been to ED or admitted to CCDHB or HVDHB with Covid-19 and have something that CCDHB or HVDHB should know about? They are working to ensure this experience goes as smoothly as possible but are always looking to improve their services. Please feedback (compliment or complaint) as it enables them to identify and address these issues.
www.ccdhb.org.nz/contact-us/feedback-suggestions-complaints-and-compliments/
or www.huttvalleydhb.org.nz/visitors/compliments-and-concerns/
If you want to email please do so via feedback@ccdhb.org.nz or feedback@huttvalleydhb.org.nz
Resources
Curious Conversations with Age Concern.
Join Age Concern for some online conversations with a wide variety of fascinating people. As we navigate through the Omicron wave, Age Concern is hosting a series of short 45 minutes webinars designed to keep people connected with each other and curious about the world. Each webinar lasts 45 minutes, which includes 15 minutes at the end for questions.
TIME: Mondays, 2pm
DATE: Next webinar Monday 16 May 2022
Curious Conversations | Age Concern Wellington (acwellington.org.nz)
Food for the mind
Keeping your brain active can and should be fun. Engaging in activities that challenge your mind helps to build and strengthen connections in the brain.
The Alzheimers NZ Book of Puzzles
From MS Australia
If you missed the Progress in MS Research Live Update 2022, you can watch the full Live Update on demand at your leisure with their free watch on demand option.
Topics discussed include MS gene hunting, rewrapping nerve fibres, how MS Nurses improve the lives of people living with MS as well as a Neurologist’s insight.
This is also an excellent chance for your friends or family to tune in, so please share with anyone who is interested.
Professor George Jelinek on RNZ
Kathryn Ryan interviews Professor Jelinek on Radio New Zealand Nine to Noon. Professor George Jelinek was 45 and at the peak of a distinguished medical career, when he was diagnosed with multiple sclerosis (MS) - the disease which had destroyed his mother's life. He set his mind to tackling the issue at the roots and eventually developed a programme for people with MS, which he documents in his Overcoming Multiple Sclerosis Handbook that has just had a third update republish.
Twenty-three years later, prof Jelinek is symptom free, and is the founder of the Neuroepidemiology Unit within the Melbourne School of Population and Global Health at The University of Melbourne. You can listen to the interview here:
OMS webinars
Join OMS for the next Finding Hope with OMS webinar on Tuesday 17th May at 12pm BST, where they will explore how to manage stress through Mindfulness and Meditation.
The guest presenter for the session will be Phil Startin, who will lead through the benefits of mindfulness and meditation and living well with MS, including tips for establishing and sustaining a meditation practice.
Opportunities
Mastering Mountains
The Mastering Mountains Charitable Trust was established in 2015 and exists to enrich the lives of people affected by MS by helping them to get outdoors. The grant helps people with these neurological conditions pursue adventures that encourage a healthy lifestyle, strengthen community, change public perception of MS, and above all, bring hope and life-long change.
Dorothy L. Newman Scholarship
The Dorothy L Newman Scholarship assists people who have been diagnosed with Multiple Sclerosis and as a result are unable to continue in their present employment and need to undergo a course of retraining to find new employment. Or to assist people with Multiple Sclerosis to stay in work by providing them with equipment / aids that are required for employment purposes.
https://www.msnz.org.nz/scholarships-and-grants-2/
Wellington City Council Accessibility Action Plan Survey
Wellington City Council (WCC) would like your feedback on how we are meeting the needs of disabled people. This information will enhance our Accessibility Action Plan update.
This survey is an early engagement opportunity to identify key areas of interest and to gather feedback. We will release the draft action plan for public consultation later this year.
If you have any questions, concerns or need assistance, please contact Melissa Wells, Senior Accessibility Advisor at melissa.wells@wcc.govt.nz or text 021 225 4907. If you require assistance with the survey via a phone call, please contact Louis Reeve on 021 375 641. Please complete the survey by 29 May 2022. The survey will take approximately 8 minutes to complete
Announcements
Welcome to our new Community Advisor
I am delighted to let you know that Lacey Reedy (replacing Katherine Jourdain) will be joining our team on 9 May. She will be shadowing me in her first 4 weeks then will be available and very keen to meet with our clients. Lacey has an extensive background in health, as a chiropractor, and much experience in client and customer focussed roles. I will be in touch again with further details once we have got Lacey settled in.
Come to the AGM
The Wellington MS Annual General Meeting will be held at 10.30am on Saturday 21 May 2022 at the Upper Hutt Cossie Club on Logan Street. You are very warmly invited to come along. More information will soon be available on our website:
Help Wellington MS to help you
It will come as no surprise that it’s really tough fundraising at this time for our MS service. We have an exciting new venture; MS Wellington became an Entertainment Membership fundraiser in April 2022. Our society will receive 20% of each sale, which equates to at least $14 for every membership sold through the scheme. An Entertainment Membership offers many worthwhile discounts at a range of outlets, including restaurants, cafes, takeaway chains, movie theatres and much more. Entertainment Memberships are now 100% digital and can be accessed using a smartphone app. Have a look at the great offers here, and please pass on to your friends, family, whānau and networks:
https://nz.entdigital.net/orderbooks/9673r37
PS If you’ve forgotten it’s Mother’s Day on Sunday, this could save your bacon (sorry veggies, but you know what I mean…) 😊
Total Mobility – discounted taxi cards
REMINDER: If you haven’t used your card for 3 years it will be cancelled. Don’t get caught short, if you’d like your card reactivated or need a new one, please email me.
The Government recently announced public transport fares will be temporarily reduced across the country to ease the cost of living over the next three months.
Fares will be half price on all Metlink buses, ferries and trains from 1 April to 30 June 2022, this also includes He Ratonga Tekehī the Total Mobility service. For full information click here:
Need to talk to a MS Community Advisor?
Our service is still operating in this COVID-19 environment and, with Lacey starting and COVID number dropping, we will be returning to in person work as well as continuing contact by phone, email and video conferencing. It is taking a little longer for me to respond to people as I am covering additional areas for about another month. 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 keep in touch.
Ngā mihi,
Gillian
Gillian Fry
Manager & Lead Community Advisor