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 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 , 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 . 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 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 / 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. We never know what the future holds for us.

Regards Doug Young President

Secretary’s Jottings – Tony Pearson

Those of you with grandkids may have seen a film called Ice Age and its sequels. In one of them after some perilous incident one of the three characters – a Mammoth, a Sabre Tooth Tiger and a Sloth asks the others why they have just put themselves at risk to save him. The reply is “Because we are a HERD – that’s what you do in a HERD – look after one another”. You will also have heard this term in another, more currently important context, HERD IMMUNITY from Covid-19. Basically, this means that if enough of us get vaccinated then collectively we can prevent the spread of the virus (you may recall that in Sweden they tried this last year WITHOUT the vaccination – it didn’t work – and the country was decimated with virus cases!!).

This seems pretty sensible to me so I was amazed to read in the Christchurch Press that a survey in early February had found that nearly a quarter of New Zealanders are unlikely to take a Covid-19 vaccine with 3/4rs of those saying they would NEVER have it! With the Government aiming for a 70-90% take up to achieve the HERD safety factor, I find this very disturbing and frankly incomprehensible. New Zealand is in the dubiously fortunate position of being well down the supply chain for vaccine delivery so by the time we get it quite literally millions of doses will have been given around the world and - as far as I am aware - there have been no serious reactions of any significance so far and the vaccines are viewed by the medical fraternity as “incredibly safe”. The Government is working hard to dispel the misinformation, innuendo and rumour leading to a high level of scepticism within some communities. Now all this effort to try and dispel mistrust and doubt is all very laudable but – hang on!– are we not a HERD of 5 million?? – so is there not a joint RESPONSIBILITY to do whatever is necessary to protect that herd regardless of personal doubts and concerns and ethnic background? For us in the GBS community there is the added personal concern of a potential re-lapse or degradation of our condition but personally I am prepared to accept the advice of the Head of our MAB Dr Parry (see his article elsewhere in this Newsletter) and I shall line up for my jab just as soon as it is offered not only to protect Tony Pearson but also to do my part in protecting the HERD that I am proud to be part of. I urge you all to do the same.

But the Covid experience has not been without its upsides! – a chance to explore more of this wonderful country – learning all about Zoom (well perhaps just the basics!) - experiencing virtual birthday parties with the grandkids – getting a phone upgrade so you could “Track and Trace” - doing all those jobs around the house and garden that have been on the “to do” list for years – marvelling at the ingenuity of “house bound” performing artists plying their trade in their living rooms via their phones and YouTube and perhaps most rewarding seeing how your local community has come together to help those struggling with the various lockdown restrictions and being part of that.

Other stuff:- The AGM is coming up on April 10th in Wellington – formal notice elsewhere in this Newsletter - to be followed shortly by an “on-line” invitation to join it via a Zoom link along with all the usual paperwork for voting etc. The combined 1-day Conference and Regional meeting will be held in Hamilton on May 8th – details elsewhere in this publication. Not only a chance to get the latest update on diagnosis and treatment of our Syndrome from members of our MAB but also a chance to quiz them in person on specifics of your own condition or on general topics of interest to the membership. I think it’s fair to say the previous sessions of this “Brains Trust” in Christchurch and Wellington have been a real success and very much appreciated by those who have been able to attend them. And finally, a BIG thankyou from me to all those that responded to our request to return their copies of Gareth’s book that they purchased but no longer need as a reference – most of them have already gone out on loan or sale to new patients – and also a “ta” from the Treasurer as none of you requested the offered $20 re-imbursement – both gestures very much appreciated. It will be a few months before most of us get our vaccination invitation so until then stay safe.

Tony

From the Medical Advisory Board

A FURTHER COVID-19 UPDATE

COVID-19 and GBS – even more follow-up by Dr Gareth Parry

What has happened in this rapidly evolving story of COVID-19 and its association with GBS/CIDP since my previous report from December 2020? The biggest development, of course, is the introduction of four different vaccines. Insufficient time has elapsed for there have been any change in the number of new cases of infection resulting from vaccination but there has been an encouraging decline in new cases nonetheless. Perhaps the widely reviled public health measures of universal mask wearing and social distancing have made a difference. To date, there have been nearly 120 million cases confirmed world-wide, but the true number of infected individuals is certainly much higher, partly because of the lack of resources in under-developed countries to carry out community surveillance testing and partly because asymptomatic cases usually do not seek testing. After all, by some estimates, only about 40% of infected people show symptoms of infection. About 2% (2.5 million people) have died. In NZ there have been there have been nearly 2500 cases with 26 deaths (~1%). Both the number of cases and the number of deaths speaks to the excellence of our response to this pandemic and the medical care available to infected individuals.

Let me now review the situation with regard to COVID-19 and the vaccinations in relationship to GBS and CIDP.

COVID-19 and GBS/CIDP: Sporadic reports of GBS following CIVID-19 infection continue to appear but the numbers remain extremely small. There has been no independent corroboration of the earlier report that there was a 2.6 times greater frequency of GBS during the time of COVID-19 pandemic. In fact, a report in December 2020 specifically refuted this earlier claim, showing no increase in GBS numbers in the UK during the pandemic. Rather, GBS numbers declined perhaps because social isolation resulted in fewer cases of other infections that might trigger GBS. As of October 2020, there had been only 37 cases of GBS reported in the medical literature. While there have undoubtedly been many cases that have not been reported this still represents a tiny risk given the staggering number of infections noted above. Contrary to some previous suggestions, the pattern of GBS following COVID-19 infection and its severity does not differ significantly from GBS associated with other infections. In fact, in one report, only 16% of patients required intensive care unit (ICU) management and none died whereas more usually 30%-40% of GBS patients require ICU management and about 5% die. Thus, with the usual caveats about the rapidly evolving state of our knowledge, it appears that COVID-19 infection may rarely trigger GBS, but the risk is extremely small and the GBS does not differ in any significant way from GBS triggered by other infections. There have been no reports COVID-19 triggering a second attack of GBS or causing a relapse in patients with CIDP.

COVID-19 vaccinations and GBS: On rare occasions GBS is triggered by vaccination, most notably to the single influenza vaccine used in the US in 1976. There is, understandably, considerable anxiety amongst GBS and CIDP patients regarding the risk of COVID-19 vaccinations causing GBS recurrence or CIDP relapse. There have been four vaccines approved after clinical testing in tens of thousands of volunteers showing dramatic effectiveness with minimal risk. The studies showed that the vaccines reduced the risk of developing infection by 70%-90% and severe illness was essentially eliminated, even with the vaccines that were less effective in preventing infection. The good news is that since approval by regulatory bodies, there have been about 20 million doses of the various vaccines given and there have been no cases of GBS that could be attributed to exposure to any of the vaccines. Nor have there been any confirmed cases of other autoimmune diseases attributable to the vaccines. The important facts to understand concerning COVID-19 and vaccination are these:

1. Unless we stay in our own little bubble, neither travelling abroad nor welcoming visitors from abroad, the risk of getting COVID-19 infection, although unable to be quantified, are certainly significant.

2. If you get COVID-19 infection you may get very sick and there is a 1%-2% chance that you will die. There is also the condition of “long COVID” which can have a long-term impact on quality of life.

3. The chances of getting GBS, having a recurrence of prior GBS, or having a relapse of CIDP following COVID-19 infection are vanishingly small.

4. Each of the currently available vaccines is effective in preventing disease and eliminating severe disease.

5. It is unlikely that drugs commonly used to treat CIDP such as steroids, IVIg or azathioprine will impair the effectiveness of the vaccines but treatment with rituximab, a drug occasionally used in CIDP, is likely to reduce vaccine effectiveness.

6. None of the vaccines has been associated with GBS, recurrence of prior GBS or relapse of CIDP.

GET THE VACCINE WHEN IT IS OFFERED TO YOU AND HELP US ACHIEVE HERD IMMUNITY. WHILE YOU’RE AT IT, GET THE ‘FLU VACCINE ALTHOUGH IT WOULD BE PRUDENT TO HAVE THEM A FEW WEEKS APART TO MINIMIZE SIDE EFFECTS. THERE IS NO EVIDENCE THAT GETTING TWO VACCINES INCREASES THE RISK OF ANYTHING.

In Memoriam – Ken Ardern by Meike Schmidt-Meiburg

The Waikato/Bay of Plenty group is sad to have lost one of our valued, very active and supportive members, Ken Ardern. Ken was a former GBS patient himself and spent 3 1/2 months in Hospital in 2012, where he shared his stay with John Dixon, another member of our group. Ken and his wife Julia then trained to become hospital visitors and over the following years visited many new GBS patients in Tauranga Hospital, sharing their story from a patient and carer's point of view. Ken and Julia were regular attendees of our informal get-togethers and also always attended our national conferences. We will miss your lovely smile and chats, Ken, and hope Julia will continue to meet up with us.

A PATIENT EXPERIENCE

(Editor’s Note – This article first appeared in the Sunday Star-Times on 29 November 2020 and is reprinted here with the permission of both Stuff Limited and Riva Walker-Pitman.)

Hoop dreams: How teen hotshot Riva Walker-Pitman made ultimate rebound

Who's heard of Guillain-Barr syndrome? Top Kiwi basketballer Riva Walker-Pitman certainly hadn't when it rendered her almost fully paralysed earlier this year. Marc Hinton tells her story of perseverance and determination:

Riva Walker-Pitman's mind was racing, even as the rest of her was grinding to a halt. Little by little, hour by hour, her energy, strength and faculties were literally draining away. It was as though her body was simply shutting down - and she had no idea why.

When you're 18 and in the prime of life, it's the last thing you're expecting. Especially when your movement, your athleticism, your natural gifts are what you've leaned on for so many years now to become one of New Zealand's premier basketballers of your generation.

Not so long ago Walker- Pitman was blazing her way to 43 points to lead her side to a spot in the final of the 2019 national schools tournament - now here she was unable to put one foot in front of the other.

What is happening to me? That was the simple thought that lodged in the mind of this Waikato hoops prodigy and freshly minted commit to Fordham University in New York City back in April, when her world suddenly got turned on its head.

Yes, April. That, of course, was when New Zealand went into its first national lockdown to combat the coronavirus pandemic. Walker-Pitman went into a shutdown of a different variety: she discovered she had a rare neurological disorder known as Guillain-Barr syndrome (pronounced ghee-yan bah-ray), in which the body's immune system mistakenly attacks its own nerve cells, with symptoms including severe muscle weakness and paralysis. Walker-Pitman, like most in this country, had never heard of GBS when frantic doctors eventually informed her that's what had caused her body to shut itself down to the point where she was almost fully paralysed, unable to eat, move, or even communicate. All while being stranded on an island of isolation, because shutdown rules forbade family being bedside.

First, let's rewind a little. Walker-Pitman, a star of Hamilton Girls High's national schools runner-up side in 2019, had found herself earlier this year in Covid lockdown in Whakatane with her partner, Chris, in his family bubble, following national health guidelines.

"It was pretty traumatic," she tells the Sunday Star-Times now, part way down the road to recovery, but with ground still to traverse. "I had found myself getting weaker, but hadn't been doing any training over lockdown and put it down to that. I was outside jogging and my legs started to give out. I tried dribbling [the basketball], and couldn't do a simple crossover. I thought 'what the heck is going on?'

"My legs were tingling. They felt really heavy and I was aching everywhere. I carried on until it got to the point where I couldn't walk and needed assistance for everything. That's when I decided, 'I need to go to the hospital'."

What followed was a blur for Walker-Pitman as she was rushed, first, to Whakatane hospital and soon after to the HDU/ ICU unit in Tauranga when the seriousness of her situation became apparent. A few days later she was transferred to Waikato as doctors searched for the diagnosis and treatment for her condition.

The youngster's first thought was she had contracted Covid-19. "I was freaking out," she recalls. "How did I get Covid? I hadn't even been outside. I felt really bad because I might have given it to my partner's family."

It was not Covid. Much worse. "There were so many unknowns. I had never heard of it (GBS). No one in my family had. I got to know one of the other patients in the ward that had it. That helped, hearing their story, what they were going through. It didn't feel like I was so alone with what I had."

In Whakatane hospital she was able to walk to the bathroom with assistance, by the time she was moved to Tauranga that became an impossibility. "It was so scary. You can't do anything. You just have to let yourself become paralysed, and you're just lying there waiting for it."

Doctors and nurses were providing reassurances. Specialists told her she would recover. She was incredibly young to have this disorder; her age, fitness and durability all played in her favour. But all this time Walker- Pitman was trudging through the uncertainty, the unknown, on her own. Her only contact with family for the first few weeks in Waikato Hospital was via the phone.

"I couldn't move anything, or do anything without the nurses. I couldn't feed myself, and they had to insert a tube through my nose because I couldn't swallow and food was getting caught in my throat."

It was during this time that Walker-Pitman, a devout Mormon, finally felt the tide turn. "As a member of the Church of Jesus Christ of Latter Day Saints I was able to get a blessing at the hospital, and from that moment on, even though it was slow, things started to move forward. "I was in hospital two months before I could walk. The last month I showed the most improvement. I forced myself, thinking 'I want to get out of here; I've got things to do'. I kept pushing myself to eat and drink more and keep doing my exercises."

She was released from hospital on July 28. Since then it has been a gradual process of rehabilitation, of strengthening limbs, of regaining weight, of restoring confidence. She travelled to Christchurch in October as an assistant coach with Anthony Corban's Waikato under-17 team who won the national championship.

"When I went to the hospital and saw her the first time, I was just distraught at how much weight she'd lost," says Corban, one of many frequent visitors Walker-Pitman has had during her long road to recovery. "But she's just had a positive outlook. For a teenager going through what she has, with the highs and lows, how she's dealt with this has been so impressive.

"She's an amazing kid, and the recovery she has made has shocked a lot of people. The real challenge is going to be getting that mass back on her, because she's lost a lot of strength. But I don't doubt she'll get there."

Waikato hoops legend Carolyn Grey has been another mentoring the youngster on her comeback trail. "She's had the worst of it, but her age is on her side and her recovery has been phenomenal," says Grey. "The hardest thing is that mental side - keeping herself focused, understanding it's a long process and all the everyday things you do are part of your recovery.

"But she's got a fantastic family with her aunties and siblings, and she's got a lot of support behind her."

Walker-Pitman, who was raised by her auntie Charmaine Walker-Eketone and uncle Shaun Eketone in a large blended family of 12, remains upbeat and is working towards a goal of playing basketball by next year and taking up that scholarship at Fordham by 2022 which "means the world to me".

"I will get better," she declares. "It's just going to take time. I know it's all going to strengthen me to get back to the same person, or even better."

From the Medical Advisory Board

A SELECTION OF THE QUESTIONS AND ANSWERS ARISING AT THE WELLINGTON REGIONAL MEETING IN OCTOBER 2020

Drs Jolliff, Joshi and Parry dealt with a lively session of questions from members at the Wellington Regional Meeting in October 2020. Below is a selection of some of the more interesting items that may be of interest to a wider group of members.

Q 1. Can GBS damage the “vital organs” of the body such as the Liver or Kidneys?

GBS impacts on our nerves and so it does not cause any damage to vital organs such as the Liver, Kidneys or Brain but it can affect our hearts, lungs, bladder and bowel because although these are autonomic muscles that function without our direct instruction they are still controlled by nerves.

Q 2. With CIDP Patients, how do you choose which is the best treatment for them between IVIg/Plasma Exchange/Steroids and is your decision influenced by the relative costs of these treatments?

Firstly, Plasma Exchange is the most invasive of the three treatments requiring the removal/replacement of blood from patients and is usually only available in the major such as Wellington (In N.Z it’s use is administered by the NZ Blood Service) so this may not suit, or be available, to some CIDP patients. It is useful as a short-term treatment but is impractical in the long term. IVIg is the most expensive treatment as it requires many hundreds of donors to produce a dose but it is easy to administer in virtually any hospital or medical clinic but carries the same element of risk as Plasma Exchange. Steroids can be very effective and are cheap. They can be given in a variety of dosage rates but carry a risk of harmful side effects and some patients cannot tolerate them at all. They have the advantage of potentially triggering recovery unlike IVIg which just halts the deterioration. At the end of the day the choice will be about what is best suited to the patient’s situation and most effective in bringing about a resolution to their condition– not about cost. Cost is a factor in the choice but not the overriding one and it would be very unusual for a Consultant to be called to task by the accountants for his / her selection of treatment because they were expensive.

Q 3. Is it likely that a deterioration in one’s balance years after a GBS attack is related to that condition or is it unrelated?

If you have made a complete recovery from GBS then it is unlikely that any later deterioration in balance is GBS related but is rather due to some other (ageing) cause. However not everyone makes a full recovery from GBS and generally speaking we reckon that recovery stops after about 2 years and at that time your situation is about as good as its likely to get. However, we do know that a patient who has only partially recovered can deteriorate decades after the initial attack in the same way that post-Polio patients can, and we don’t really know why that is. Whether that shows up as a loss of balance or a general muscle weakness probably depends on the way the patient recovered after the original attack.

Q 4. What do you mean by a “Full Recovery” from GBS?

70% - 80% of all GBS patients regain their full strength after 2 years but this does not mean that they are back to normal because some 80% of those patients will suffer from persistent Fatigue for years and possibly decades afterwards. They do not return to their previous levels of energy and everyday functioning. So, when doctors talk of “full recovery” they are usually referring to recovery of muscle strength that occurs as the myelin sheath is restored and the axons regenerate. Too little attention has been given to the persistent fatigue that plagues so many GBS patients since it is what prevents returning to their former level of physical activity, even if strength returns. The reason for the Fatigue is unknown.

Q 5. I am a CIDP patient and on regular 4 weekly IVig transfusions. In the week before my next session I (and a good CIDP friend of mine in a similar situation with the same Neurologist) notice an increase in weakness, numbness, pins and needles and enhanced fatigue. My Neurologist says it’s all in my head because that sort of deterioration does not present so fast. I am now beginning to doubt my judgement on this issue – am I right or is he?

IVIg like many medicines has a “Half-Life” – that is the period beyond which it’s efficiency to treat the condition diminishes by about 50%. For most individuals the half-life of IVIg is 3-4 weeks but there is a lot of variation; in some individuals the half-life can be as short as a week while in others it may be 6 weeks. The timing of IVIg infusions is usually set at 3-4 weeks because it is the commonest half-life, but it is common for the effect to wear off sooner and for symptoms to return. In such cases the deterioration is not “all in your head” and it is possible that infusions need to be administered more frequently. Of course, there are multiple factors that go into the decision regarding how often to treat and sometimes it is the judgement of the neurologist that more frequent treatment cannot be justified. One common situation is when a patient “feels” worse but there is no objective evidence of the worsening. In such situations it would be useful to be able to provide the neurologist with some objective measure of deterioration. To do this one of our members in Auckland uses a Hand Dynamometer to measure his GRIP strength on a daily basis and charts the results – over a period of months he was able to demonstrate to his Consultant an objective picture of increasing weakness towards the end of his IVIg cycle period. This was accepted and appropriate adjustments made in his treatment programme. So, this may be one way of demonstrating to your Consultant the increasing weakness that you experience in that last week of your current cycle. An alternative treatment to regular IVIg might be to use Steroids on a weekly “pulsed” basis which in some 60% of patients can produce long-term remission whilst avoiding all the usual nasty side effects of regular Steroids – weight gain etc – but unfortunately not the risk of osteoporosis. Whilst there may be some minor side effects of switching to Steroids these may be acceptable when compared to the inconvenience of regular infusion sessions. Something that should be discussed with your Neurologist. In some areas of NZ, with appropriate medical approvals, it may be possible to switch to Sub-cutaneous IVIg which can be self-administered weekly at home. Like regular IVIg infusions this is still just a maintenance routine but further enhances the convenience of utilising the medication.

Q 6. My Neurologist says that my symptoms do not match up with any of the recognised markers for CIDP and he is not convinced that trying IVIg is worth while – is this a reasonable position for him to adopt?

If, as Neurologists, we eliminate the most common causes of neuropathic symptoms – Diabetes and Alcohol – then of the remainder some 50% will be classified as an IDIOPATHIC NEUROPATHY which means we simply don’t know the cause of the condition. Just putting a patient in this category - where GBS/CIDP are not substantially indicated by the established tests – on a course of IVIg or Steroids makes no sense EXCEPT when it is used in a TRIAL. To do this as many quantitative markers as possible (strength balance, etc, etc) should be established for the patient at the outset. Then IVIg and/or Steroids might be prescribed for a period of say 6 months and at the end of that period a re-assessment of the markers carried out. If there has been no improvement (i.e. not just the patient saying “I do feel better”), then there is no point in continuing the treatment and another avenue needs to be explored.

A PATIENT EXPERIENCE

Light at the end of a tunnel by Sallyanne McKenzie

I was first diagnosed with GBS on the 6th of September 2019. I was working in a Rest Home where some patients came down with Norovirus. I too had the symptoms. I had fallen in the shower injuring my back one day and gone to my GP who gave me medication for my back pain. The next day I had gone to work, where my colleague said I was walking very unsteady, and I was sent home. I rang my Health Centre, who sent the Emergency Doctor to my house. He thought I had had a stroke and rang for an ambulance. I was then rushed to Wellington Hospital with sirens going. I truly don’t remember anything else, until 4.5 weeks later, when I came around in the ICU ward. I couldn’t communicate as I had a tracheostomy and was being ventilated. I had no idea of what had happened to me, but was able to recognise my family members. The staff were amazing, they became my friends on their shifts. I was in ICU for 5.5 weeks, then moved to the High Dependency ward, then to medical ward, where I was for a week before being transferred to Kenepuru Hospital for rehabilitation. I found physio extremely hard, but with routine physio programmes twice daily I learnt to walk again, firstly with a walker then eventually a 3-pronged walking stick. I was eventually discharged for home on the 17th of December, ready in time for Xmas.

A senior staff member from ICU stayed in contact with me and rang to ask if I would be interested in coming into the hospital to speak to new and permanent staff in ICU about my experience as a patient. Of course I accepted, this is the reason why I am writing this hoping it will benefit others in a similar situation with GBS. I went with my mother to the seminar room and met up with some staff that I could remember and a lot that I didn’t. Questions that were asked: What did I remember? Was it noisy? What did I feel would have been better during my stay? They also asked my Mother similar questions that applied to her visits daily to me. The next day I received an email from the staff educator telling me what the nurses had said about my talk - all the comments were positive.

When I came round in ICU, I was visited numerous times by a Hospital Visitor of the GBS Support Group. He also visited me many times when I was in Keneperu, always with a smile on his face and speaking positively to me, each time he visited he commented on the progress he could see I had made. One day he visited me in ICU and had left pamphlets talking about what GBS was. My Mum took them home with her, so she could read up on the Syndrome. She also rang Tony (the National Secretary), this was a great benefit to her.

I am still not back at work, but am able to drive, walk without a stick and nearly back to 100 percent. It has been a long journey and something that I would not wish on anybody, but thanks to the staff of Wellington DHB who without their help and support, I would not be writing this today. I never thought I was a positive person, but I was told many times by the staff that attended to my every need, that it was due to my positivity that I am where I am today. During my recuperation at home, appointments for physio, neurology, podiatry and personal care were made for me by an agency, all of which were very beneficial. The aids and equipment, e.g., shower chair, toilet seats, kitchen trolley, walker, all helped with my recovery. Throughout my entire time of suffering with GBS, I have met some wonderful people whom I still keep in contact with, and I am forever grateful for this.

A PATIENT EXPERIENCE

MY 2020 – Covid-19 was the least of my worries – by Lance Beste

At the beginning 0f 2020 I was looking forward to two heart valves being replaced by metal valves. I’ve had a problem with my heart since birth. New valves meant the possibility of breathing fully for the first time in my life. Then Covid-19 arrived, and all elective surgery was postponed. What a bugger. When Auckland dropped from Level 4 to Level 3 in April, I got the call to come to hospital. It was quick because many on the list head of me were afraid of hospitals during Covid-19.

First, I had to go to for a drip to remove Warfarin from my body. I’ve been taking Warfarin for my heart condition, an anticoagulant, for over ten years. The next stop was Auckland Hospital for my surgery. A week later I was back home. The operation was successful, and I must say all the staff at the hospital were magnificent.

During the next six weeks I had to be careful not to disturb the stitches or my sternum. I began walking from the second day in the hospital and I continued this to build up strength and stamina. I walked nine holes of golf while watching my friends play. I did this three times. The first was great but the second and third time seemed to get harder. A few days later, I woke up unable to breath properly.

A quick text to my doctor, and he told me to come in immediately. An x-ray and blood tests showed liquid around the left lung. Two hours later I got a call telling me to go to emergency, where they were expecting me. Once the warfarin was out of my system, they drained the liquid, a total of three litres. I went home once the warfarin was back to the correct levels.

All was well until the breathing problems began again. I had to go through the same process once more except this time it was only one litre of liquid. Back home and feeling good when all of a sudden, some strange reactions from some of my joints began to occur.

My right knee collapsed while putting on my shoes. Then the left knee collapsed as I got into my car. Unbearable back pains started. I went to the doctor after a period of continuous back pain and some more strange joint problems. He booked me into hospital again for examination. It was now late August.

For two weeks I was in nonstop pain and even opioids didn’t provide relief. I felt like dying to relieve the pain. At this point I couldn’t even lift my leg at all. My whole body was shutting down. I had no strength at all. The specialists decided I had Guillain-Barré Syndrome (GBS), a serious health problem that occurs when the body's defence (immune) system mistakenly attacks part of the peripheral nervous system. This leads to nerve inflammation that causes muscle weakness or paralysis and other symptoms. It was now early September. I cannot be certain of the exact date I was infected with GBS, but a good guess would be during the time when they found liquid around the lungs.

One treatment for GBS is intravenous immunoglobulin. I received six bottles through a drip, and I was told the cost was $24,000. Grateful for our public health. Once this was completed, it was a matter of finding the right medicine to relieve the pain, and slowly doing little exercises to help the brain restore the damage to the peripheral nervous system. At this point I couldn’t lift my leg and my hands were like permanent prickly hotplates. Most people recover completely but it can take up to two or more years. My hands were so sensitive I couldn’t tell if I was successful turning on a light switch until the light came on. My hands were pretty useless and very weak. It was impossible to do up buttons or complete other simple tasks. Not many people are lucky enough to receive such a present on their 75th birthday.

The opioids were funny. I began hallucinating. I did things like try to pick something up that wasn’t there even if I could see it clearly. I told the hospital and even asked if I was going mad. The psyche people checked me out and said it was the opioids. They were immediately stopped. It meant my pain killers would be less effective and it meant a period of pain which I could have done without. This would get better by the time I left hospital.

On 16 October I was released and could go home. Fortunately, Vera, my partner, has been fantastic. She has helped me with all the simple tasks. Things like putting on socks was impossible for me. All those things done automatically without thought, such as clipping nails, she had to help me with. She organised the mountain of drugs to be taken morning and night. She also kept me on a healthy diet.

Physios and Rehab people have been coming every week to help with the little recovery exercises and walking. Then after about two weeks after leaving hospital, I got gout. The normal pill stopped the pain, but the left foot began to swell up, as per the photo. Then the right foot and both ankles began swelling. I was given a tablet to remove the build-up of uric acid. The next day my urine was blood. This was stopped immediately.

Both legs are now swollen, and it feels like I have a thick tight sock on each foot up to the top of the shin. Nobody knows if this is being impacted by the GBS - only time will tell. The feeling in the hands appears to be changing and now affects the whole hand, back and front. I have to keep moving to stop the intense feeling from my hands. I have to be mindful of what I touch some things such as zips which make the feelings very painful. I continuously shake my legs because they are now quite sensitive all the time.

Lots of you have major problems with the spread of Covid-19. New Zealand has done well controlling it, but even if they hadn’t it would have been the least of my worries. I hope at some time this year to be able to play golf again. I do my best to maintain a positive outlook. It is what it is.

2020 has now gone. I look forward to 2021. I pray that it is better for everyone. A lot of people have been critical of and stupid with their reactions to Covid-19. It will be great if we could all come together and kick this virus in the butt. Watching the Apprentice with Lord Sugar is a bit of a worry. The people being tested reveal all the issues everybody faces every day. If this is an example of our future, then God help us.

Today the intense feeling of my hands makes typing quite difficult and painful. The feelings in my leg and hands seem to get worse. Maybe it’s a sign that I am moving back to normal. Who knows, all I can do is take one day at a time. Despite this, I will still pray and keep faith with positive possibilities.

Top of the South Coffee and Chat Gathering At “Happyz” – Alchemy Arts Centre Richmond Sunday 31st Jan 2021 at 10:30

Present were: Tony / Vivienne / Gareth / Michael and Heather Clifford / Murray and Barbara Brown / Chris and Leanne Gamble / David Little / Graeme Palmer / Sarah Heath / Ray and Michelle Watson (Blenheim) / Harry Cockburn (Northland Hospital Visitor). Without doubt, having Dr Gareth Parry attend the get together was a draw for some of the attendees and true to form he answered all the questions that were put to him – in one case arriving at a new diagnosis of a member who had been diagnosed with Miller Fisher and couldn’t understand why it was taking so long (over a year) to make a decent recovery – Gareth’s “over the table” advice was that it was a severe GBS attack that had also affected the facial muscles and would take a much longer time to effect a full recovery- perhaps not what the member wanted to hear but he went away less worried about his current condition and reconciled to a longer recovery. Cannabis, of course, was discussed and interestingly was NOT recommended by those that (allegedly) had tried it as a pain reliever – largely it would seem because of the uncertainty surrounding the level of THC in the product that had been sampled and its potential/experienced side effects. Gareth mentioned the current drugs and medications that are commonly used to try and manage pain in GBS patients but conceded that sometimes even a “cocktail” of these does not produce the result hoped for. Fatigue was a major topic of discussion and all present survivors confirmed it was still an issue for them. Gareth outlined a study that was being considered by the Group to come up with an exercise routine that survivors could follow to help manage their fatigue – there was 100% support for that study to proceed. We discussed the age profile of the Group – recognising that there was a deficiency of “younger” members – a trend also reported by the UK Group – and how we might better “reach” the younger members with information about the Group. Whist the website was much improved and cell phone friendly as Harry pointed out the younger generation treat Facebook/Twitter/Instagram etc etc as a normal part of their life and to reach them we must engage in ways they can relate to. It was agreed that Tony would raise the concept of a “Young Survivors” advisory Group with the Board – to be recruited via Facebook and the website and to communicate via these media and Zoom to gather ideas from them about how best to reach them with relevant information about the Syndrome and Group activities. A surprise awaited two of the attendees who had known each other professionally for many years with neither realising that they were both GBS Survivors. That took the conversation in a discussion about some form of “outdoor wear” recognition, e.g. lapel badges as Rotary do or suitably “vibrant” T shirts with a GBS label – both of which we have done before but maybe now is the time for a revival? With Coffee and eats consumed the meeting closed about 1230hrs Contributor: Tony Pearson

Meeting of the Waikato/Bay of Plenty Group at the Verandah Cafe in Hamilton on 11 February 2021

We had another lovely get-together - this time in Hamilton at the Verandah Cafe in the Lake Domain, close to Waikato Hospital, where a few of us stayed during our GBS journey, and the family members spent some time at the playground and domain at the Lake. We welcomed a few new members to our group and exchanged briefly our stories, followed by yummy lunch and more chatting. Many comments were made how a group like this helps everyone in their recovery, a positive attitude, success stories from the others, smiling faces and the friendly atmosphere, and everyone is already looking forward to our next meeting!!

Seated from left to right: Rex Soppet, Fran McKay, Yvonne Powell, Fiona Green, Sue and John Dixon, Emma Wolfe.

Standing from left to right: Rosemary and Rex Buckley, Meike Schmidt-Meiburg, Karen Soppet, David Powell, Lyn Neels, Darrel Brown, Julia Ardern, Grant McKay, Jan Gribble, Michael Logan, Judy Deed, Chris Hewlett, Barry Deed, Phil Wolfe. Photographer: Marty Hewlett Contributor: Meike Schmidt-Meiburg BAY OF PLENTY/WAIKATO REGIONAL MEETING Saturday 8th May 2021 at the Park View Motor Lodge, 450 Tristram St., Hamilton

9:45-10am Welcome 10-10:20am What’s new in GBS and CIDP? Dean Kilfoyle GBS and COVID-19 and the COVID-19 vaccine Unique antibodies in some CIDP phenotypes Other 10:20-10:30am Questions/discussion 10:30-11am Morning tea/coffee 11-11:20am Fatigue in GBS and CIDP Suzie Mudge Including presentation of research proposal if it is still going forward. 11:20-11:30am Questions/discussion 11:30-11:50am CIDP update Gareth Parry Include a discussion of variants 11:50-noon Questions/discussion Noon-1:00 Lunch 1-4pm Panel discussion: Dean Kilfoyle, Suzie Mudge, Chris Lynch, Karen Clark, Vic DuPlessis

BAY OF PLENTY REGIONAL MEETING REGISTRATION Name ______Address: ______E-Mail: ______Given Name: (or nick) name for name tag ______Are you the Survivor/patient? Yes/No Are you the Caregiver? Yes/No Cost Per Person: $30 (Includes morning/afternoon tea and light lunch) PLEASE RETURN TO GBS, PO BOX 4162 PALMERSTON NORTH 4442. IF PAYING BY DIRECT CREDIT, ENSURE YOU INCLUDE YOUR SURNAME IN THE REF BOX. BANK DETAILS ARE: TSB BANK MOTUROA BRANCH NEW PLYMOUTH A/C NO: 15-3949-0339362-00. ALTERNATIVELY YOU CAN REGISTER THROUGH THE GBS WEBSITE: https://www.gbsnz.org.nz/events_waikato-bay-of-plenty2021/

(Given the ongoing circumstances around the COVID-19 pandemic, please note that any upcoming event will be subject to any restrictions on gatherings which may apply at that time. It is ultimately also up to the organiser and participants at that time to make a common-sense decision whether or not to proceed.)

Bay of Plenty/Waikato Coffee Group

When: Tuesday 13 April 2021 Wellington Coffee Group Time: From 11am Where: The RSA, 99 Beach Rd, Waihi Beach When: Saturday 17 April 2021 Time: 3pm-5pm The bar opens at 11 am, lunch is available from Where: 124 Navigation Dr, Whitby, 11.30 till 2 pm. Coffee and sweets, e.g. muffins etc. Porirua are available at the bar. We could meet in the bar and go into the restaurant Ansie & Louis Nortje would like to invite next door, when all are ready. After eating, we you for a coffee / tea and some home- could go back to the bar and have coffee. There is baked snacks at our home (no need to no set time to get out of the building. bring anything). The address is 99 Beach Road. Coming from Please confirm with Ansie: Waihi: turn left where the sign says Waihi Beach. Mob: 027 332 8546 Follow the road till you come to a roundabout, go Email: [email protected] straight through, the RSA is about 30 metres on the left on top of the hill. Coming from Tauranga, turn off at the sign to Auckland Coffee Group Waihi Beach just before entering the Athenree Gorge. Turn left when you reach the intersection, When: Sunday 11 April 2021 follow the road through the village about 5 Time: 2pm-5pm kilometres, till you come to the roundabout. Turn Where: Headquarters Lounge 214 right and the RSA is on the left. Buckley Avenue Please let me know, if you can make it or not, for Hobsonville, corner of Buckley letting the venue know, many thanks. Hopefully and Hobsonville Point Road. you can all come!! Plenty of street parking Meike: (07) 867 3163 or 027 325 03 69

or [email protected]. We look forward to catching up with all the Looking forward to a good catch-up with you all, regulars – and especially welcome first-timers. Meike. Please RSVP to Eileen at [email protected] (09) 444 8382 or 021 113 3607

Please bring a plate of finger food for afternoon tea. Tea/coffee/milk available. See you there.

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