4 November 2021
Hi everyone,
Welcome to the latest edition of ‘News from your Community Advisor’. Sorry, it’s a long one this time but you can just read the parts that interest you.
Community Advisor Services
MS Community Advisors are still available for you, our service just looks a little different at the moment. At alert levels 2, 3 and 4 it becomes a ‘virtual service’ so you can have contact with us by phone, email or video conferencing. Face to face support groups do not take place under levels 2, 3 and 4. We will keep you informed of any changes as the Government transitions to the new Traffic Light system. It is going to be a learning curve for all of us!
Covid 19 updates
Book My Vaccine information
As a reminder, here is the information to book a Covid-19 vaccine online.
Book My Vaccine | Ministry of Health NZ (covid19.health.nz)
Covid-19 Vaccination Healthline – new service for disabled people
The Covid-19 Vaccination Healthline is now offering a new service offering disabled people and their families a chance to talk about what accommodation/supports are needed to access vaccinations. This includes facilitating transport to and from the vaccination site, and any other requests people may have. The team is made up of advisors who are either disabled themselves or are close allies of the community. Call 0800 28 29 26 and press 2 to get through to the Disability team.
3rd Primary dose of the vaccine
The Government has announced the recommended use of a 3rd primary dose of the covid 19 vaccination in those that are severely immune compromised. Information about its use and guidance about who is able to access it is available on the MSNZ website, link below.
COVID-3rd-Primary-Dose-Guidance-for-People-with-MS-28-October-2021.pdf (msnz.org.nz)
Wellington Neurology have emailed their patients on disease modifying therapies. In short Neurology recommends the 3rd vaccination for people on ocrelizumab (Ocrevus) and fingolimod (Gilenya). If you are in this group please contact your GP to arrange a 3rd dose. At this stage they are not recommending a 3rd vaccine if you are taking any of the other therapies.
In Wellington, for people taking ocrelizumab and your MS is stable, the recommendation is to have the 3rd vaccine 6 months after your last infusion and delay the infusion for one month. Even if you have had the vaccine prior to starting ocrelizumab the Neurology team would recommend an additional dose.
If you have further questions that are not answered in this information please contact a member of your medical team.
Extract from Issue 76 Neurology Research Review
‘This review evaluated the current literature on COVID-19 infection in adults with neurological disease, and determined the risks and benefits of vaccination in these individuals. Based on the available evidence, COVID-19 vaccination should be recommended to all patients with neurological disease. There is potential for an attenuated immune response to vaccination in patients taking immunotherapies, so timing of vaccination in these patients is important. Comment: This is a good summary of what we know about the effect of COVID-19 on various neurological disorders and of the interaction between the various vaccines and the disorders. The bottom line is that the disease is much more dangerous than the vaccine. For patients on immune suppression, there is guidance on the interactions with vaccine and the best timing for vaccination. For detailed information, the NZ immunisation handbook is an excellent resource. Reference: Neurology 2021;97(15):720-8’
Exemption from face masks
Face coverings are unsuitable for some people due to a disability or health condition. An exemption card has been developed that you can show when entering shops and other premises. Exemption cards can be requested from the Disabled Persons Assembly NZ by contacting them on 04 801 9100 or emailing them at info@dpa.org.nz.
New Ministry for Disabled People
Great news over the weekend; a new Ministry for Disabled People has been announced and will be launched next year.
Government announces new Ministry for Disabled People | Stuff.co.nz
MS Voice
MS Voice is the MSNZ Newsletter, bringing their latest news, what MSNZ has been working on and tips to living well. If anyone would like to get the regular newsletter of MS Voice;
Scroll to the bottom of the page and look for the sign me up box on the right;
Home | Multiple Sclerosis Society of NZMultiple Sclerosis Society of NZ (msnz.org.nz)
Online exercise classes
MS Yoga Classes
Finding an exercise that you enjoy and can do regularly is an important way to manage your MS symptoms. Regular exercise can slow the progression of disability by expanding your physical and cognitive reserve.
We have two yoga classes running during term time. Both classes are online, so you can join them from the comfort of your own home.
Please contact our MS yoga teacher Diane if you are interested in trying a class or finding out more information. Her contact details are dianejcm@gmail.com or text 027 421 0775
Term 4 yoga classes:
Tuesdays 12pm – 1pm
Thursdays 10am -11am
MS Physio classes
https://www.msakl.org.nz/exercise-videos-with-gilly-davy/
MS and Fatigue
Fatigue is one of the most common, troubling symptoms experienced by people with progressive MS. For many people, it is the symptom that affects them most.
Join MSIF to learn about the latest advances in treatment and research in fatigue during this 30-minute global webcast. An international panel of MS experts will answer questions submitted by people affected by MS from throughout the world. From ways to manage or reduce fatigue to research seeking the cause and developing new treatments, this webcast will provide information to help improve quality of life and keep you informed.
Panelists include:
- Angela White has been a leader in the MS movement since her diagnosis of multiple sclerosis in 2002. She volunteers in a variety of roles at the National MS Society in the U.S. and is active in the MS International Federation Patient Reported Outcomes Initiative.
- Dr. Stefan Gold is the Heisenberg Professor of Neuropsychiatry in the Department of Psychiatry, Charité Medical School in Berlin, Germany. As a clinician and researcher, he focuses on complex symptoms in MS including fatigue.
- Dr. Jaume Sastre-Garriga is a Neurologistneurologist at the Neuroimmunology and MS Centre of Catalonia in Barcelona, Spain. He has served in several leadership positions in MS treatment and research internationally.
- Dr Michelle Murphy is a Psychotherapist and Senior Lecturer in the healthcare sector in Ireland. Michelle has served in a number of management roles in the disability sector; developing specialist neurorehabilitative services.
Register Now: www.msif.org/progressiveMSwebcast/
Tuesday, 9 November, 2021 at 4:00 pm GMT, 5:00 pm CEST, 11 am EST
Interesting reading here: Does “MS fatigue” capture the symptom experience? – MS Australia
Shona Daube’s new book
‘Just call me Ma’am and a simple curtsy will do’ is a humorous look at taking control of your health. Shona, a former registered Nurse was diagnosed with MS in 2014. Determined to face any challenges in life with humour, she is skilled at sharing this humour through her writing. This is her 4th book since her diagnosis.
If you would like a copy of the book, please let me know and I can get one to you in the mail.
Finding Hope with Overcoming MS
The Overcoming MS Charity has a vision where every person with MS can take control of their health, can make informed lifestyle choices, and can live a full and healthy life. They have produced a webinar series taking a dive into a variety of topics including the ‘OMS diet – A Practical Guide, ‘Women’s health and Living with MS’, and ‘Movement and Breathing better while living well with OMS’. Some of the webinars have already been, and the recordings of them are now available, They can all be accessed here;
Our Multiple Sclerosis Events | Overcoming MS
Feel free to be in touch with me at any time if you have any questions or would like to discuss your needs.
Ngā mihi,
Gillian Fry
Manager & Lead Community Advisor