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NEWSLETTER March 2021 Guillain – Barré Syndrome Support Group

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NEWSLETTER March 2021 Guillain – Barré Syndrome Support Group Information published in this Newsletter is for educational purposes only and should not be considered as medical advice, diagnosis or treatment of Guillain-Barré Syndrome, CIDP, related neuropathies or any other medical condition. Guillain – Barré Syndrome Support Group New Zealand Trust Registered N.Z. Charity No. CC20639 Charities Act 2005 NEWSLETTER March 2021 Patron Hon. Steve Chadwick Ph (03) 230 4060 President Doug Young P.O. Box 8006, Glengarry, Invercargill Email: [email protected] Ph: (03) 540 3217 Secretary Tony Pearson P.O Box 21, Mapua, 7005 Email: [email protected] Ph: (027) 44104086 Treasurer Peter Scott P.O. Box 4162, Palmerston North, 4442 Email: [email protected] Ph: 027 332 8546 Newsletter Editor Ansie Nortje 124 Navigation Dr, Whitby, Porirua, 5024 Email: [email protected] Gareth Parry Medical Advisor ONZM.MD.FRACP.ChB Web Site Support Education Research www.gbsnz.org.nz Board of Trustees President Secretary Treasurer Doug Young Tony Pearson Peter Scott Dr Matthew Peacey Dr John Podd Dr Matthew Peacey \ Chris Hewlett Meike Schmidt-Meiburg We Need Your Continuing Support. Can you help us by making a small Donation? We rely on donations from members and supporters to cover the operational costs of the group which is run by unpaid volunteers, all GBS/CIDP/Variants survivors or members of their families or carers. BANK TRANSFER INFORMATION TSB – Moturoa Branch New Plymouth Bank Account Number – 15 3949 0339362 00 Please be sure to put your NAME in the reference area of the form so we can issue you with a receipt. AUTOMATIC PAYMENT: Another way that you may like to consider is using internet banking to make small but regular monthly donations to the Group – a $5 per month would give the Group $60 a year – a really helpful donation. CHEQUE INFORMATION Medical Advisory Board Dr. Gareth Parry (Chair) ONZM, MB, ChB, FRACP Emeritus Professor, Department of Neurology, Clinical Senior Lecturer, Otago University, Wellington. University of Minnesota, USA. Research Professor, Medical Advisory Board: Nelson-Marlborough Institute of Technology. GBS/CIDP Foundation International Visiting Neurologist, Wellington Hospital. Dr. Annette Forrest Dr. Suzie Mudge ICU Consultant Director & Physiotherapist Neuro Rehab Results MBChB, BPharm, Dip ag & Vet Pharm Senior Lecturer/Senior Research Officer PGDIP aeroretrieval Health and Rehabilitation Research Institute, AUT Masters Aviation Medicine University CAA Medical Examiner PGDIP Occupational Health Dr. Dean Kilfoyle Dr. Chris Lynch Neurologist Auckland City Hospital Neurologist and Neurophysiologist at Waikato Hospital Auckland District Health Board Honorary Senior Clinical Lecturer at the Auckland Medical School Waikato Campus Dr. Jennifer Taylor Dr. Vic du Plessis Consultant Neurologist at Wellington Hospital Neurologist and rehabilitation specialist. Part time consultant neurologist Dunedin Karen Clark Dr. David Gow Clinical Nurse Specialist, Neurology Neurologist with Southern DHB Waikato Hospital Kathryn Quick Kylie Kerr Physiotherapist Occupational Therapist, Burwood Spinal Unit in Christchurch In this Issue … Editor’s Note Ansie Nortje Notice of AGM in Wellington on 10 April 2021 President’s Report Doug Young Secretary’s Jottings Tony Pearson COVID-19 and GBS: Even more follow-up Dr Gareth Parry Remembering Ken Ardern Meike Schmidt-Meiburg Article on Riva Walker-Pitman a Sunday Star-Times publication October 2020 Wellington Regional Meeting: Q&A Collated by Tony Pearson A Patient Experience Sallyanne McKenzie A Patient Experience Lance Beste Past Events Notice of Bay of Plenty / Waikato Regional Meeting in Hamilton on Saturday 8 May 2021 Notice of other Upcoming Events Editor’s Note – Ansie Nortje The loss of Ken Ardern has left us all with sadness. He played a vital role as Hospital Visitor and as part of the Waikato/Bay of Plenty group – he will be greatly missed. In this newsletter, I want to acknowledge our patron, Hon. Steve Chadwick for her ongoing support to us. Steve, we value the fact that you are our guardian and protector, and we are privileged to continue walking alongside you. In addition, I want to thank Dr. Gareth Parry for his ongoing provision of information about the COVID-19 situation. It goes without saying that this pandemic has changed our lives forever and that all of us have again realised the crucial roles of our medical people. Hence, Gareth, medical specialists such as yourself and those on our Medical Advisory Board, are crucial components of our existence, and it is therefore difficult to explain the full content of our gratitude to you all. Personally, I am relieved to hear that there seems to be only a minute risk for GBS/CIDP patients to be vaccinated against COVID-19. However, it is vital to continue following the Ministry of Health’s advice, such as: keep track of where you have been; stay home if you are sick and get a test; wear face coverings on public transport, domestic flights and when you cannot maintain physical distance in public places; and get the vaccine when it is offered to you so that we can achieve herd immunity. I am pleased to see that we are now able to continue with our social lives, and that our social activities are back on schedule. Please refer to the notifications of the upcoming AGM on 10 April, the Bay of Plenty / Waikato Regional Meeting in Hamilton on 8 May, as well as Coffee Meeting groups, and please do participate wherever possible. There is a lot of research about social connectedness (socialising; social support; and a sense of belonging), and wellbeing, and social connectedness is a key driver of wellbeing and resilience. I hope that through our newsletter and support group, you will feel connected to and valued by other people, as inherently we all have a desire to belong and to be part of something greater than ourselves. On a lighter note: Why did the student eat his homework? Because the teacher told him it was a piece of cake! Have a festive Easter time! Ansie Notice of AGM The 19th AGM of the GBS Support Group Trust will take place at 1100hrs Saturday 10th April 2021 at the Miramar Links Conference Venue at the Miramar Golf Club 1 Stewart Duff Drive Wellington. Formal Notice, Agenda, Minutes and Proxy Forms will be circulated to all members of the Trust by the end of March. Everyone is welcome to attend the meeting and members are eligible to speak and vote at the meeting. The meeting will also be broadcast live on Zoom. Members will be advised of the link to enable them to join the Zoom meeting with the formal Notice. Members who are unable to attend the meeting may nominate a Proxy to vote for them, either our President Doug Young or another member of their choice. If you have any questions about the forthcoming AGM, please direct them to the Secretary Tony Pearson on 03 540 3217 or [email protected] President’s Report – Doug Young To all readers of our newsletter - welcome to the March 2021 edition. We appear to be in a more comfortable position now for planning ahead to the future than we were 3 months ago. Regardless of whether it has been due to good luck or good management? The arrival of the Covid vaccines will hopefully give us more confidence with the options for freedom of movement we haven’t had for the last year now. Still goes without saying it can change overnight should a variant appear that the vaccines are not effective against. Therefore, please read Gareth Parry’s recommendation with regards to vaccination for us GBS / CIDP survivors that is included in this newsletter. Thanks to NZ having reasonable control of the virus within our borders, it has reduced the need for any hasty moves by Government to immunize everyone, and the large scale, final testing of the vaccines has been done by others thus greatly reducing the risks for us. Thank you to Gareth and his team for monitoring the effectiveness of the vaccines overseas thus enabling him to give us a positive result. The travel wishes for a large number of us who would like to go beyond our borders, may happen within the next twelve months. Let us be positive about this one. Our GBS Support Group’s business over the last three months started with our December 8th Zoom meeting, thank you to all the Board members for attending. Tony has reported on the meeting minutes & content under his report. From these you will see the Board members have plenty to achieve over the last 3 months as our next Zoom meeting is this week (16th March). I talked about the need for Fundraising in my last report. Thank you to everyone who have made a donation so far this year, it is greatly appreciated. Again, we rely heavily on your donations for our survival, so those of you who haven’t, please consider making a donation, as we really do need it to help keep us going as an organization. I wish to thank our Board members for continuing with their efforts, working around pandemic hurdles that are still in place. Some of the ongoing points: Planning for 2021 – with a Regional Meeting for the Bay of Plenty area to be held in Hamilton on Saturday 8th May. AGM back on the normal timetable of April / May, will be in Wellington on the 10th April. Coffee gatherings. The research programme on “light exercise” to help overcome fatigue, which is a major issue during GBS recovery, is still on the agenda. Our Website continues to function well. The re-development of our Authorized Hospital Visitors training program is progressing in the background. We continue to look for ways to expand our group for the benefit of our members, therefore look to and discuss options with similar organizations as ours, to keep ourselves abreast of what is happening with regards to research, government funding, and other charitable trusts that provide support to their members like we do.
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