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 December 2020

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 Louis Nortje

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

President’s Report Doug Young Secretary’s Jottings Tony Pearson Report on AGM and Board Meeting, October 2020 Tony Pearson COVID-19 and GBS: Where do things stand at present? Dr Gareth Parry CIDP: Subtypes and Variants of CIDP Dr Jennifer Taylor Ongaonga Study: Where are we now? Dr Gareth Parry My GBS Adventure Martin Walker

Noticeboard

Editor’s Note – Ansie Nortje

This year will be remembered as the time in history when a pandemic spread across the world. Also, as a time when we were brought back to realise what is important in life:

Ahakoa he iti he pounamu Although it is small, it is a treasure. Let’s celebrate and enjoy what we have!

Research confirms that our general wellbeing improves when we focus on positives, such as the good things that happened worldwide this year. Examples include the Nigerian-Irish teens who developed an app for people living with dementia; a team of volunteer tradesmen who built a new home for a family after their home was destroyed by a fire; Africa was declared free of polio; and retro-evolution with drive-in cinemas that have made a comeback! In addition, a lot of good things happened in our GBS space, and I am sure that we all enjoyed and learned from the many activities we had. On a personal level, I found the information that was shared during our recent Wellington Regional Meeting valuable and very helpful. It was also a lovely opportunity to catch up with other Support Group members and to get to know them a little better.

On that note, I want to use this opportunity to acknowledge the many contributions you all made during this year to our Group. Whether you attended a coffee group meeting, had a conversation with a fellow Support Group member, visited someone in a hospital, or any other activity, what you did was valuable and much appreciated. In addition, a special word of thanks to our Patron, Hon Steve Chadwick for her ongoing support to our Group, to all our Board members for their “behind the scenes” work, as well as our Hospital Visitors. Lastly, thank you to our Medical Advisory Board for regular articles and here I especially want to acknowledge Dr Gareth Parry for constantly “keeping tabs” on how the COVID-19 situation affects our members, with yet another update appearing in this edition.

Wishing you peace, love, and joy this holiday season and throughout 2021!

Ansie

Medical Advisory Board

A very warm welcome to Karen Clark, the newest member of our Medical Advisory Board. Karen works as a Neurology Clinical Nurse Specialist for the Waikato District Health Board, specialising in Multiple Sclerosis and neuromuscular conditions. She has over twelve years’ experience working with people living with long term neurological conditions. Karen is based at Waikato Hospital in the neurology outpatients department, where she works with both inpatients and outpatients providing a comprehensive service.

President’s Report – Doug Young

Welcome to our December 2020 newsletter. Merry Christmas to everyone reading our newsletter and no doubt we are all looking forward to the time we spend with family and friends during this period wherever possible. It has been a difficult year and stressful for every household no doubt. We are no different, I thank the heavens for my wife and her incredible ability to keep it all together and going. I would like to acknowledge and to thank all of the partners and support people associated with our committee. It’s a time for joy, reflection and planning ahead to the future, how lucky we are to have the freedom of movement so many others will not have during the festive season, living in other countries. This goes without saying it can change for us overnight as well. Therefore, spare a thought for our fellow New Zealanders working and managing our boarder isolation facilities this Christmas, trying to keep us safe and somehow recognising their efforts so it doesn’t seem a thankless task on their part. With COVID-19 vaccine’s now appearing on the scene, we can look ahead to a more positive future of “normality” if they can produce one suitable for people like us. It is a big question mark. Gareth Parry and his team monitoring the effects of the virus haven’t seen any reports of an increase in GBS patients due to people contracting the virus. However, any vaccine will have to be treated with the same caution we GBS suffers have to show to all vaccinations. Therefore, any of our travel wishes going beyond our borders, may just have to be on hold for a while yet, so get out there and enjoy NZ. My comments for the GBS Support Group’s business over the last three months start with our AGM meeting held in Wellington on the 10th October, thankyou everyone who attended and Tony and Peter in particular for the organisation of what was a very successful meeting, which we combined with our annual Board Meeting along with making it a Regional Conference for our Wellington area members. Thankyou Dr Gareth Parry and his supporting Medical specialist team of Drs Purwa Joshi & Evan Jolliffe for their time speaking with our local members. It never ceases to surprise me the amount of knowledge and supporting information passed on to people at these gatherings, everyone gains something from their attendance. The Minutes of the two meetings business are presented by Tony Pearson further on in this newsletter. From those you will see the Board members have plenty to achieve over the next 6 months to get everything back in line with our “normal”, having lost 6 months due to COVID-19. My Priority is Fundraising. Thank you to those who have made a donation so far this year, it’s greatly appreciated. One of the main areas we need your help as members is the ongoing fund raising effort, we rely heavily on your donations for our survival, please consider making a donation, as we really do need it to help keep us going as an organisation. I wish to thank our Board members for continuing with their efforts, working around pandemic hurdles that are in place. A further Board meeting via Zoom was held on the 8th December, with plenty of items on the agenda. Some of the ongoing points: Planning for 2021 – with a regional conference in the Hamilton area. Coffee gatherings have been underway again and the one held in Auckland last month sounded very positive, Tony Pearson who attended, will comment on it. The research program on “light exercise” to help overcome fatigue, which is a major issue during GBS recovery, is still on the agenda. Our Website is functioning well. The re-development of our Authorized Hospital Visitors training program is progressing in the background. Again, thanks to Gareth for his good work all round, and the specialist people he has continued to add to our MAB, giving coverage over wide areas of the country. By doing this it sits well with the regional meeting concept for being more cost effective for all those involved. I wish you and your families all a safe and enjoyable festive season. Regards

Doug Young

Secretary’s Jottings – Tony Pearson

I have reported elsewhere in this Newsletter on the “official” business of the Board and AGM meetings held in Wellington in October, but a much more enjoyable session on the same day was the Regional Meeting held in the morning after the Board meeting for a couple of hours. Some 20 members attended the session which was led by Dr Parry ably assisted by Drs Purwa Joshi and Evan Jolliff, both Neurologists at Wellington Hospital. There were short presentations on GBS/CIDP/Variants generally and then a flow of questions from the room and although many of them were personal to the questioner it was surprising just how many resonated with others in the meeting.

I will review my notes on the meeting and record the more interesting questions and the panel’s responses for a future Newsletter. Inevitably the “Cannabis Question” came up with all the Drs expressing concern about the confidence they could place in the make-up/strength of the product used if they prescribed it to patients although Drs Jolliff, Joshi and Parry all recognised that some patients did perceive a benefit from its use as a pain control/relief product. Now that we know the results of the Referendum we know that it will be a disappointment to users within our own group many of whom are unable to afford the cost of the prescribed oil and have to utilise other “unofficial” sources to meet their needs. It is interesting that the New Zealand Nurses Organisation Policy Adviser was reported in their Nursing Journal that “there was disappointment over losing a potential opportunity to control and license cannabis products, potency and sales”. It would seem that nurses have a different perspective than their Consultant colleagues. As has been the case with previous Regional meetings, the session had to be drawn to a close to accommodate the rest of the day’s programme but there is little doubt that those attending derived considerable benefit from the opportunity to have a face-to-face discussion with a knowledgeable team of Neurologists about specific issues and concerns with their ongoing GBS condition. I am looking forward to the next Regional Meeting in Hamilton in May next year. Our Group is a member of the Rare Disorders New Zealand umbrella organisation that advocates on behalf of the hundreds of “rare” diseases in NZ to persuade the Government to increase funding through PHARMAC for some of the new and very expensive drugs that are revolutionising treatment of some previously terminal conditions. In this respect we are, in my opinion, lucky in that we have proven treatments that arrest the immune response and allows our own bodies to affect a recovery (in most but by no means all cases!). There is, as of yet, no “magic” cure for GBS although ongoing international research does seem to be bringing focus on the specific “bits” of our nervous and immune systems that underlie the cause of our rare Syndrome. I know it can’t come soon enough for those of you with long term issues! On a lighter note back in May of this year Vivienne and I had planned a short vacation trip to Auckland but like so many of you that trip was curtailed by COVID-19 and we were issued with a credits for our flights by AirNZ. Well, a few weeks ago, we decided to redeem those credits and spent a couple of days in Auckland for a little retail therapy for Vivienne and a chance to view the Americas Cup boats in the Viaduct Basin first-hand for me AND to coincide with a long-postponed Auckland Coffee Group Auckland GBS Group get together. While the retail therapy objective was somewhat overshadowed by the cacophony of building noise and disruption that characterises central Auckland at present. I did get to see Team NZ preparing their boat in the Basin and a distant view of them commencing a sailing outing and also a squint at the UK team boat preparing to launch but the highlight of our short Auckland visit was to meet up with the Auckland “Afternoon Tea” group who had assembled at the Community Building in Hobsonville on Sunday afternoon. The meeting was organised by Eileen Jacobsen who is also an AHV for the Auckland area and she was joined by 14 members – many of them new to the Group – for an enjoyable afternoon swapping stories and experiences. Meike made the journey up from Thames to join us – a one and a half hours drive – so thank you Meike. Eileen had asked everyone to bring a plate – and they did – we could have fed twice the number! As so often is the case we overstayed our booking for the room and had to break up with discussions still going on even as we cleaned up the premises and with everyone agreeing it was a worthwhile gathering and should be repeated. Well enough from me for now. As always: stay safe, we may have to wait a while for a vaccine to contain COVID but at least it (or they) is on its way.

Tony

REPORT OF THE AGM AND BOARD MEETING HELD IN WELLINGTON ON OCT 10TH 2020.

18 members made the trip to Wellington to attend the AGM – a meeting much delayed from its usual May timing but permitted by the Charities Commission due to the Lockdown restrictions that applied from April because of the Covid-19 pandemic. The full Board was present. Reporting on developments with the Onga Onga project since the last AGM, Dr Parry advised that the research team of Eric Buenz, Matt Peacey and himself had entered into a partnership with the Cawthron Institute – a Nelson based research organisation of International repute, with on-site facilities to progress the search for the critical molecule that is responsible for the numbing effect of the stinging nettle plant thus avoiding the need to engage with overseas research establishments. Ongoing supplies of the “raw materials” had been secured from a local Farmer with a large stand of the nettles – as well as Eric’s own efforts in planting up his own garden with the plant. Matt Peacey, our website manager, was pleased to report a lot of engaged use of our website. The medical content on the site had been reviewed and updated during the year by Dr Parry. Meike Schmidt- Meiburg, our Facebook site Moderator reported we have 340 members using the site, mainly from NZ of course but also from Australia, the USA and the UK. Doug Young presented his President’s report to the meeting, mentioning, in particular, Dr Parry’s regular updates on the website and Newsletter about the Covid-19 situation, allaying any concerns its potential to trigger GBS and its possible implications for existing members. The Medical Advisory Board had been strengthened this year and a new study into the impact of Fatigue, and its relief, on GBS’ers in New Zealand was being formulated by members of the MAB. Doug noted that ongoing funding is a concern for the Group and thanked our regular sponsors the ARA Lodge No. 348 IC Charitable Trust and the Parry Foundation for their support. The meeting unanimously approved a change to the Trust Deed that allows for the Financial Statements to be “Reviewed” by a competent person approved by the Board – rather than having to be “Audited” by a professional accountant – this will save the Group a significant amount of money in terms of professional fees and is not expected to result in any lessening of the standard of accounting performed by our very experienced Treasurer. Peter Scott then presented his Accounts for the year which, in spite of an increased level of donations, showed an overall loss of some $5000 – essentially the net loss of running the Hamilton Conference in 2019. Whilst the Group remains financially sound the Board have resolved to look at ways of increasing donations and grants to ensure the ongoing viability of our operations. In the light of this it was confirmed that membership subscriptions would continue to be waived. The meeting re-elected Matt Peacey and Peter Scott (the rotationally retiring members) to the Board and wished Beverley Whittaker well following her resignation from the Board due to the level of her business commitments. Doug was returned as President, Tony as Secretary and Peter as Treasurer. The Board had discussed future plans for Group membership meetings and due to the concerns over the costs of running the traditional two and a half day biennial Conference had decided to hold all future AGM’s in Wellington (the most central point for Board members and membership in general) and to focus on the concept of the one day Regional Meetings that had proved so successful in Christchurch last year and had been well received earlier today in Wellington. The next Regional meeting will be held in the Hamilton area in May 2021. Following the International Conference of regional GBS Support Groups in Sydney earlier in 2020 attended by Tony and Dr Parry, the Group had agreed, in principle, to join the Asia-Pacific Organisation to be set up by the USA Group to support regional groups like ourselves without interfering in the way they are run. Groups in India, Malaysia, Australia and Japan had also indicated their support for this arrangement. The Board have decided to review the way in which we present information of the nature, treatment and prognosis of GBS/CIDP/Variants conditions to the medical profession, patients and the general public and will be investigating the use of Social Media formats to do this. This policy will also be applied to Hospital Visitor recruitment and training.

Tony Pearson

From the Medical Advisory Board

A FURTHER COVID-19 UPDATE

COVID-19 and GBS: where do things stand at present? by Dr Gareth Parry

Our knowledge and understanding of COVID-19 have increased exponentially over the 8 months since I last wrote about it and so has our understanding of the possible link to GBS. Furthermore, tens of thousands of volunteers have been exposed to several different COVID-19 vaccines and there is undoubtedly a lot of anxiety amongst the GBS and CIDP community about the risk of the vaccine when it becomes available in NZ. I therefore thought it was an appropriate time for an update. 1. COVID-19 and GBS. You will recall that I reported on a possible link between COVID and GBS a few months ago. At that time, it was just a small group of patients and the conclusions about a possible link were necessarily uncertain. A recent publication adds more robust scientific evidence supporting the link. In Italy, during the worst of the pandemic, the incidence of GBS was 2.6 times higher than it had been the previous year. Furthermore, the GBS was more severe following COVID-19 than it was following other triggers. This still constitutes a tiny risk and does not suggest that COVID-19 is like Campylobacter or EB virus in which the risk is much higher. Given the huge number of COVID-19 cases worldwide (approaching 70 million), it is perhaps surprising that there have not been more cases seen. It is possible that they have been seen but not reported in the medical journals. I have been unable to find any reports of CIDP relapse following COVID-19 infection. 2. COVID-19 vaccine and GBS. The preliminary results of the safety of 3 different vaccines have been reported to date. The full range of adverse effects is not yet in the public domain. So far, there have been no reports of GBS following vaccination. There has been one report “leaked” to the press about a case of transverse myelitis but it has not been confirmed. Transverse myelitis, like GBS, is an autoimmune attack on nerves but those in the spinal cord, not peripheral nerves. However, if confirmed, this raises some concern about these vaccines causing GBS in some individuals. Given our current state of knowledge it seems prudent for GBS and CIDP patients to avoid COVID-19 vaccination until more data is available. This constitutes the current state of our knowledge and will change as we get more experience. The GBS and CIDP community can be thankful that NZ is largely COVID-free but they should be very cautious about travelling to hot spots such as the US.

From the Medical Advisory Board

CIDP: Subtypes and variants of CIDP

by Dr Jennifer Taylor

There are many variants of CIDP, such that it may not be a discrete single disease, but a spectrum with a similar underlying cause.

Typical CIDP involves both motor and sensory deficits, with 50% of those with CIDP presenting with the typical syndrome. Weakness is symmetrical and involves both proximal and distal limb (shoulders and hands; thighs and ankles).

There is Sensory predominant CIDP and Motor predominant CIDP, which present like CIDP, but with one modality predominantly affected. A variant of Sensory only presentations is called CISP. This presents with sensory symptoms and imbalance related to sensory loss. It can be more difficult to diagnose, as standard nerve conduction studies do not show demyelination in the distal nerves. The area of nerve affected is at the root, or beginning of the nerve.

Another presentation with prominent sensory symptoms is DADS (distal acquired demyelinating symmetric neuropathy). This presentation affects feet and hands most, sensory predominant but with motor deficits. It is important in that a specific antibody can be found in 50 - 70% (anti-MAG), and response to treatments may be different.

Lewis-Sumner Syndrome or MADSAM (multifocal acquired demyelinating sensory and motor neuropathy) is a multifocal subtype of CIDP, where instead of a more generalised weakness, specific nerves are affected, particularly in the upper limbs.

CANOMAD is a rare variant of CIDP, that includes involvement in the muscles controlling eye movement, and more problems with balance. In this condition abnormal protein production from a type of blood cell (plasma cell M-protein), and antibodies can be found. POEMS syndrome is a rare condition where a demyelinating neuropathy occurs again with abnormal M-protein production, but also with changes affecting the skin, organs and endocrine glands.

In daily practice awareness of the different presentations is important, to identify less common presentations that may respond to immune treatments. In addition, there can be different responses to treatments, and the rarer conditions associated with abnormal protein production M-protein, may be more responsive to treatments targeting specific blood cells.

From the Medical Advisory Board

Ongaonga study: where are we now? By Dr Gareth Parry

In 2016, the NZ GBS Support Group Trust generously provided a grant to support work into trying to identify a toxic chemical in ongaonga, the NZ native stinging nettle. This unknown chemical causes numbness following exposure that can last for several days, making it potentially valuable in the search for a more effective treatment for neuropathic pain, the pain that afflicts many GBS and CIDP sufferers. Progress has been slow, influenced in part by the COVID-19 pandemic, but we are moving forward. 1. Harvesting of plant material: We have identified a plentiful source of the plant that we can harvest to extract the toxin. 2. Extracting the toxin: The toxin is contained in trichomes, the needle-like spines along the leaves and stems of the plant. After harvesting the trichomes they are mashed up in liquid, the crude extract is filtered to remove bacteria and particulate matter and the remaining solution is used for testing. In collaboration with the Cawthron Institute, we are investigating ways to increase the efficiency of the extraction process. This has not been as successful as we would have liked and the extract is still of low potency, much less potent than getting stung by the living plant. Initially, we used water to extract the toxin but now plan to try ethanol and methanol to see if we can increase the potency. The crude extract can then be divided into different parts based on the weight of different molecules. These plans have been delayed by the COVID-19 lock-down but the work will resume in January. 3. Clinical testing of the toxin: We have developed a bioassay for the toxin. The plant extract is injected just beneath the skin of a volunteer subject (mainly me) and the clinical response (numbness) is measured. We have been able to reliably identify a unique clinical profile of the toxin application which will enable us to identify which components of the crude extract contain the toxic molecule of interest. 4. Chemical assay of the crude extract: The crude extract has been assayed by the Kunming Institute of Botany in China and has been shown to contain multiple different chemicals. Some of these chemicals are already known which could account for the acute pain experienced with exposure but do not account for the observed neurological effects. Further assays will be done at Cawthron that has the expertise, equipment and facilities to perform them. These chemical assays will yield extracts with fewer and fewer different molecules, each extract being tested clinically, until we can, hopefully, identify a single molecule that is responsible for the local anaesthetic effect that we are seeking. 5. Expenditure of funds: The current balance from the original grant amount of $24,888 is $11,589. Most of the funds have been used for the purchase of equipment and chemicals used for the extraction. The investigators (Drs Buenz and Parry) and the research subjects have donated their time. We have not yet been invoiced for the work by Cawthron but the balance will be sufficient to cover their costs and any other costs incurred. We will request no further funds from the GBS Support Group Trust. The funds received have been invaluable in launching this project and we are hopeful that we will be able to obtain alternative extramural funding based on the preliminary results of our research.

A PATIENT EXPERIENCE

My GBS Adventure by Martin Walker

February 2017, the Saturday night dinner function at a weekend-long Cactus and Succulent convention in Taupo, and my wife noticed another guest sending the chicken back to the caterers to be cooked a bit more. I didn’t notice anything and just bolted my chicken down, as I usually do. Sunday evening, or at least by Monday morning, as I drove our big Cactus Truck back to Auckland, I had an uncomfortable back, reminiscent of many years earlier when I had recurring back pain. Nothing to worry about, just a nagging pain. As a hardworking cactus nurseryman, I was used to a pain component in life!

Monday night I started having a very odd skin sensation – when I rolled onto an area of colder sheet, I was sure the sheet was wet. It wasn’t wet, and I eventually figured out it just felt so much colder that it FELT wet. The next day I was standing near my wife as she watered some plants with a powerful hose and watering wand. The wind blew my trousers against my leg and I turned around in shock that my wife had just watered me! But no, it was just a zone of dry but cooler cotton trouser brushing my leg. These cold/wet sensations continued all week.

I was spraying weeds with a knapsack sprayer on my back and went to climb a step up a terraced part of my large garden, something I often did with 10 litres of spray on my back. This time my legs didn’t have the strength and I had to walk around the long way.

Intense pins and needles began in my feet, and the back pain was now preventing sleep. So, early Wednesday morning, quite concerned, I was waiting at opening time, at the clinic of my regular doctor, after a long painful night. A new doctor, who didn’t know me, examined me and prescribed Vitamin B tablets and “come back in two weeks if the symptoms persist”. (I was not impressed!)

Early the next morning (Thursday), I was again waiting at the clinic for the doctors to arrive. This time I was allowed only to see a nurse who relayed my (increasing) concerns to a different doctor who sent the nurse back to me with a prescription for Panadol.

Later that day, in desperation, I paid a visit to a chiropractor. I hadn’t been to a chiropractor for over 40 years, but the back pain reminded me very much of the pains I used to seek chiropractic relief for many years earlier. But his mild manipulations gave no relief at all. Although, he thought we could improve things with a 12-month course of them. Leaving his premises, I noticed I had a strange gait at times, wobbly and meandering, like a classic movie drunk.

In the middle of Thursday night (my fourth without sleep) I found the website of a different chiropractor who a friend had recommended and who seemed to have a big reputation. I emailed him at 3am and described my symptoms and told him how they were increasing fast and what could I do about it and I would come to him IMMEDIATELY if he would see me. I’ve got to give this guy great credit for he emailed me back first thing when he got in to his work, a very brief email but straight to the point: “If someone presented to me with your symptoms I would send him to A & E at immediately”.

A few hours later I had been dropped outside A & E at the local hospital. I had printed off a thorough account of my symptoms and the timing of their onset, to hand to the counter staff. And finally, I’d found people who took me seriously - although I had to wait until 2am next morning for the right doctor to see me. Actually, this wasn’t the right doctor, as we were to learn. By then I was walking very strangely indeed, staggering back and forth to keep my balance etc.

I was admitted to a ward and there began a very long succession of doctors and testing of my symptoms. That morning my brother-in-law brought my wife in to see me. I got out of bed to head to the toilet and found my legs were gone. Luckily, my brother-in-law managed to catch me, as I had no leg muscles at all. I never got to the toilet, but that function didn’t work again anyway for quite some time. I was moved again, this time to an orthopedic ward, and the stream of doctor and nurse visits continued. The pain in my back was very bad and my wife would position pillows following my precise instructions which would relieve the pain if placed perfectly! I was unable by now even to move in bed or adjust my position. She stayed at my bedside all the hours that the hospital would allow. When I asked for more painkillers in the night a nurse would look at her watch and say “Sorry Mr Walker, but I can’t give you any more until another 12 minutes”.

My arms and hands had lost most of their strength now and I had to be fed. The doctors seemed to think it was a spine issue but unsure what exactly. I was convinced my spine needed manipulation but they wouldn’t entertain that idea. Yet they had no diagnosis for me, and I was getting desperate. I’d checked into hospital on a Friday morning. By the following Thursday I was seriously plotting - I had a friend who was willing to help me escape and then I was going to get him to drive me around Auckland, paralysed, in his car until I found someone who would manipulate my back. As arranged, very early on the Friday morning, he beat the security system and got to my bedside. He’d found a wheelchair for me and my wife was packing up my possessions. We were going to quietly depart and hope like hell we could find some better expertise, out there somewhere.

But I think they must have got wind of our plans. A sister came and spoke to me. Then a different (senior) woman I’d not met before came and spoke with me at length. I told her of my disillusionment and desperation, and she assured me there was nowhere better for me to be. I asked my friend to stand down. We’ll escape tomorrow if they don’t make any progress today.

That very afternoon a new fellow (quite an old fellow actually) came to my bed and conducted a lengthy examination and interview. Push me, pull me, lots of tapping at me with a reflex hammer. Finally, he said: “Well, Mr Walker, you’ll be moved to my ward very shortly”. Oh really, do you know what it is? Yes I do. What is it? It’s a rare thing called Guillain-Barre Syndrome.

I was soon moved to a much older part of the hospital. It was shabby-looking, the walls were water-stained and the ceiling panels above me were loose. There weren’t many people there, neither patients nor staff. My wife wasn’t allowed in I think. I was put on a drip. The drip took forever, at least 6 hours it felt like. The only staff member I remember seeing in there was this one person who seemed to be running between multiple tasks, he appeared to be doing everything.

At one point the staff member brought me a bowl of very hot porridge. He started to feed me with a spoon but there was a big gooby of hot porridge about to drop off the bottom of the spoon, so I reached forward (with my head) to get the porridge before it landed on my neck. Next spoon, same story, he didn’t wipe the bottom of the spoon, and only I could see that. So I had to dive up at the spoon, like a fledgling gannet, to gobble it before I got a burnt and messy neck. And again. Faster this time. He must have thought I was ravenous, and it suited his style perfectly: finally, he had a patient who wanted to eat his porridge the way HE would have eaten it. So that’s how we set a new world record for one bowl of hot porridge.

Next day the same again, another interminable drip, and not of porridge. Experienced GBS’ers will, of course, recognise that this was an IVIg transfusion. And I was in a place called, I think, the High Dependency Unit. About the third day I was taken somewhere quieter and less macabre, there to begin my recovery.

Nothing discernible came from the IVIg. And nothing recovered fast, but I certainly did not worsen after the IVIg. I suspect it came too late, and the GBS had already run its wicked course.

I was taken to the senior ward, for the 65 plus crowd. I was 65 years 4 months so younger than most. As I improved the physio would wheel to my bedside a great blue machine to help me stand up. I would grip the two handles and the nurse would power it on and my feeble legs would try to follow it up. Then came the walker things, then the crutches.

On the morning of the day I was due to go home, I had one last doctor examination. The boss doctor got his hammer swinging and voila, there was the slightest of slight reflexes detected! He was chuffed and the timing was perfect he said. He explained that I had had no reflexes whatever detected up to that point. Update: they are now normal I suspect, what a pity they’re not useful for anything!

I went home on crutches after 10 weeks. Barely went outdoors for many months as I could not even carry anything while on crutches. My wife kept the nursery going through all this, what an amazing woman!

I now work every day, although fatigue often sets in. My arm and hand strength is back to normal. But my legs are weak like they aged 30 years or more. I still do construction work in the nursery, up and down ladders, carrying heavy plants, but I’ve not got the stamina for it really. I still have the pins and needles but they’ve slowly retreated to just the front half of my sensitive feet. I have a pain in my back and lungs when I ask too much of them. And instead of a yawn I produce a loud involuntary gasp that quite disconcerts those nearby!! When I get too tired, I will have a little snore while walking. That’s also disconcerting, and usually a sign I need to stop!

We took a holiday to the botanic gardens of Singapore and London, and near Reading hired a canal boat we drove for two weeks in the south of England last year, so we haven’t done too badly. I did a few locks but ended up as helmsman while my wife and a couple of mates did the locks. That conserved my energy for the frequent walks sideways to places of interest, mostly pubs.

But I do wish I had worked less and taken more holidays when I was fit enough to go tramping. For example, I’d love to do the Heaphy Track or even part of it but I doubt I’m up to it now, I think carrying a pack would sap my leg strength rapidly. But is my daily walking and working all I could be doing to build leg strength or should I be doing some other exercises? And would they then render me too exhausted for running my business as well? As it is, I often feel so exhausted I have to have a nap, which can easily kill the rest of the day. These are my current questions! Thanks for listening, and thanks for all that you people do to understand this strange GBS thing.

(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 Cycling / Walking Group

When: Thursday 14 January 2021 Time: From 10:30am onwards, meet at 10am Where: From Leamington towards Lake Karapiro

Hi Everybody We'll start the New Year with a bike ride, or walk, followed by a shared picnic lunch. Bring your bicycle, nordic walking sticks and a shared picnic lunch, chairs, plates and cutlery, cups and drinks, walkers welcome too!!! Coming from Cambridge end, drive into Leamington. The main street is called "Shakespeare Road". Turn left into "Browning Street". We will meet at the corner of "Browning and Carlyle Streets". If you get lost, phone Grant for directions: 021 865 620. Please confirm with Grant that you are coming:[email protected]

See you then - Meike :)

Reflecting on the Waikato/ bike ride 6 October 2020

We had a lovely bike ride, starting in Matamata at Grant and Fran's and riding towards Te Aroha, ~ 22 km all up. Then the sun came out, which was nice, and we had a shared lunch under the big sun umbrella in their garden - where we had to try one of everything! They have 3 grandkids from Hamilton staying with them this week and they came for the ride too: Kirsty, Sam and Elise.

From left to right, back: Meike Schmidt-Meiburg, Judy and Barry Deed, Fiona Green, Chris Hewlett, Grant McKay and Kirsty, Elise with Fran McKay and Sam in front of Meike and Judy. Photo: Marty Hewlett.

The Waikato/Bay of Plenty Christmas get together 26 November 2020

Thank you all for coming along to another lovely catch up, with a yummy lunch, and a fun-filled secret Santa. Best wishes to you all, have a lovely Christmas and get good into the New Year, all the best for 2021, stay happy and healthy, see you again soon!! Many greetings, Meike :)

Back row, standing: Barry Deed, Michael Logan and Lyn, Grant McKay, Chris Hewlett, David Powell, Rex Bannister Middle row, standing: Fiona Green, Fran McKay, Karen Soppet, Jan Gribble, John Dixon, Judy Deed Front row, sitting: Meike Schmidt- Meiburg, Yvonne Powell, Rex Soppet, Brenda Ferguson, Sue Dixon, Linda Bannister. Photo: Marty Hewlett.

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