It is hard to say when it all began.

I finished my last chemotherapy infusion for bowel cancer in January 2020 and now it was time for the harsh chemicals to leave my body.

The last visit to an Oncologist was on 11 February 2020.   There was neuropathy in my fingers and toes that I first noticed in December 2019 when I was having my 9th infusion, but I was reminded that this should cease within 6 months after I had finished my last infusion.

Things were looking good.  I enjoyed walking and could walk down to the pond and even further down to Pine Harbour which was encouraging.

However, I noticed that my walking was getting slower, and the range of walking was getting shorter.  I began to feel that I couldn’t go far unaided. It was harder walking up the small inclines. I noted in my diary that my body seemed wrecked.

In March 2020, diarrhoea and reflux returned and by the end of March my legs were not good at all. My knees were feeling numb. It was getting harder to move around easily. Lockdown was looming. Because of my low immune system my Doctor and I decided that I have the flu injection.

At the beginning of April, I noted in my diary that I was still having problems with diarrhoea and with my legs, there seemed to still be the pains in the vicinity of my knees.  The pain felt a little like stinging nettles

Still not good at beginning of May.  The diarrhoea and mental health does not look good, I sleep a lot and it was not always what I would call, good sleep.  Very heavy and very intense and yet I could not remember any of the thoughts or what it was all about in the morning.

I felt that with all that I had been told, I should be on top of the world!

On the 4th of June I woke up with severe pain in my legs.  An ambulance was called, and I was taken to hospital.  After tests I was told that I had peripheral neuropathy and I was discharged.  I was unhappy as I still had pain.  I called my doctor and he saw me on the way home. Pills were changed.  In the next few days my family observed that I was slurring my words and that my face was falling.  I personally did not notice.  As I was not walking comfortably, a friend called by and lent me a walker.  On the way out she confided in my wife that I looked a bit like her brother who had had GBS.

On the 9th of June I was not feeling very well at all.  I was having problems with my balance.  I felt a mess!

The Dr rang to check on me and said to my wife, Rosemary, to ring in afternoon.  He advised her to take me straight to hospital as it was thought that I was having a stroke.  She mentioned my wife’s friend’s observation.

Everything seemed to be crumbling, my face, my eyes, my speech.  I could not chew.  The food would not go over my teeth.  I was placed in the stroke ward.  I was sent for a CT scan to see if I had had a stroke.  There was nothing on the scan and it looked as if both sides of my face was drooping.  I was unable to close my eyes properly.  Somewhere along the line I had become constipated, so an enema was given.  That was another story!  In the middle of the night, wearing pull ups, I was placed in the Respiratory Ward.

Early next morning an MRI was ordered and finally a lumbar puncture.  Abnormalities were found so the first of five blood infusions were given.  They took so long each day that I called it my liquid lunch.  Rosemary obtained some covers for my eyes as the light kept getting in.  The mattress on the bed was changed to an air mattress.  Never have I felt so uncomfortable.

I was given physio treatment for about 10 mins.  That was all I could handle.  I could not raise my legs.  I felt dreadful.  It was devastating.   An OT visited and talked about goals.

I felt that I had something in my ears and that was looked at, but nothing came of it.  My whole torso felt limp and heavy.  Many examinations took place by students and oh that hammer!  Sometimes I thought that I was being funny but the shocked looks on people’s faces.  I soon learned that my face was not moving, and I was showing no emotion at all.  My son told me it was the first time in his life that he had not been able to read my face.

Throughout the time I had to blow into a machine every four hours.  It was my enemy to begin with as it was so hard.  My face had to be held to get the air into it.  I never felt rested.

Finally, it was time to be discharged.  Before this could happen, I had to be sent to another hospital to have shocks put into my legs so that a final diagnosis could be made that I really had GBS.  As the appointment was early it was decided that I go by taxi. Thankfully a young nurse persuaded me to go with an orderly as I would not have managed it on my own. All hospitals seemed to be on partial lockdown.

I was discharged on the 23rd of June.

As I was deemed not so bad, after leaving hospital, I was given 10 weeks of Physio and OT visits as rehab. It was to take place at home. I was loaned a walker, a toilet surround, and a stool for the shower. The visits were stopped with the August 2020 lockdown.  The scheduled Neurologist visit did not happen. I received a phone call in its place.  I seemed to be Getting Better Slowly.  I was told I was fortunate it could have been worse.

Where am I now?

I still have pain in my legs especially at night.  Nights can be long.  I often sleep in my Lazyboy chair as that is the most comfortable place to be.  I use my stick if I am away from home.  I have a disability card. I cannot walk far from home for long.  Thank goodness, the garden is a wonderful haven!

I don’t use a lot of medication.  I am often tired and fall to sleep frequently.  I have difficulty with my eyes at times and my ears ring.  Wheat bags have been amazing.

I keep in touch with my doctor.  I have requested a neurologist visit but so far this has been denied.

My grandson Ryan asked me – ‘Pop, when are you going to get well?’

I am working on it buddy!

My son, Damon said to me – ‘Never mind father!  You’ll be right for Christmas.  We just won’t nominate which Christmas!

Greg’s story as told by Kristie Boland and published in “The Press” on June 22 2021. Reprinted with permission from Stuff News.

Greg Barrett had just returned home after battling wild bush fires in Nelson in 2019 when he began feeling unwell.

Two days later, he was in hospital –  a stay that lasted three months. He lost all sensation in his legs.

The Christchurch volunteer firefighter was diagnosed with Guillain-Barre Syndrome, an illness that shuts down the immune system, resulting in extreme pain and paralysis.

When Barrett was finally discharged from hospital , he spent six months learning to walk again.

“It’s the wierdest feeling when you look down and you go, I want my feet to move, but nothing happens.”

Barrett was concerned about the impact on his work with the Spencerville fire brigade, in Christchurch’s  northern suburbs.

He lives near Bottle Lake Forest, so had volunteered for firefighter training to be able to protect the area should there be a fire.

Since joining, Barrett has been to 10 rural fires, including the Port Hills and Nelson fires.

His “world got turned upside down” by Guillain-Barre Syndrome, he said.

After 12 months Barrett was able to walk again with the help of a walking stick.

He approached Spencerville fire chief John Reed about his situation, feeling he “wasn’t ofany use” as a firefighter, but was told: “Once you’re a part of our brigade, you’re always a part of our brigade.”

Barrett continued to attend training nights with his walking stick.

“When something like this happens to you, you try to find your new normality. I learned quite quickly that if you don’t accept that normality as to what it is, then you can never move forward.”

He is still not fully recovered but is making good progress.

Volunteer firefighting was about “being part of a community and serving that community”, Barrett said.

“I am proud to be a volunteer firefighter and to be aprt of my crew,: he said.

Volunteers make up nearly 12,000 of Fire and Emergency NZ’s staff at more than 600 fire stations.


Riva’s story as told by Marc Hinton and published in the Sunday Star Times 29/11/2020

Who’s heard of Guillain-Barré 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.”

Mike Whyte

My Experience with CIDP

First up, a wee disclaimer – this is long… very long, but I recall that when I was searching for information about this condition, much of the content I read had been edited for brevity, making much of it pretty useless. You’ll see in no uncertain way, that I’ve avoided the temptation to be brief. Don’t say I didn’t warn you.

Over the course of November 2018, I became aware that some of the exercises that I was doing at the gym were becoming difficult to do. Actually, not so much difficult, but awkward. It seemed to involve any exercises that required a certain degree of grip strength.

This was pretty specific to exercises like the upright row, the lat pulldown and barbell curls. These all required a motion of pulling on a bar. Exercises like bench press or shoulder press didn’t seem to bother me, as these required a push motion with the hands.

I came to the conclusion that for some reason I must have a weak grip and that I needed to work on my grip strength.

Over the next couple of months this become more and more noticeable. I also found that I was a little more clumsy – I fell down steps a couple of times, fell off a ladder and slipped getting into a bath tub.

I didn’t recognise at the time that my legs were any weaker than normal. It wasn’t till later, looking back, that it made sense why I was clumsier than normal. On the occasions when I fell, it was at times when my legs were at a wide extension, with a substantial amount of weight being born on one leg, such as when taking a staircase at two or three steps at a time, or when stretching across trying to get into a bath tub, or whilst navigating around a ladder. There was this particular occasion when I was up a ladder and I decided I could do a mid – air transit from one side of the ladder to the other. I reached around with one leg on the far side, my leg bent – past experience told me I could rely on just one, half bent leg to support my entire body weight – but this wasn’t to be the case this time – so I ended up in a heap on the deck below, with a paint can in my hand. The result wasn’t pretty.

The moment when I realised that my weak grip was something more than just ‘something to be worked on at the gym’ was on a Friday evening when I had a guest at my house for a romantic dinner. I went to open a bottle of wine (a screw cap) and just couldn’t undo the cap. I had to make some excuse and disappeared out to my laundry to find a pair of pliers to open the bottle. Very smooth move – she never suspected a thing.

This was the moment that I realised this had to be some kind of medical issue, so I did what any curious lad does- I consulted google. I searched every possible reason I could find for a weakened grip. The only possible suggestions that I kept coming up with were MS, Carpel Tunnel and Motor Neuron Disease. There were other things that could be immediately ruled out, but these three were the only things that came close to explaining a weakened grip, although all 3 also had other symptoms that I wasn’t exhibiting. I’m fairly resourceful when it comes to data searching, so it really surprises me that I didn’t come across anything about CIDP at that point.

At the time, my GP was on holiday, so I called in to see his Locum. He ruled out carpel tunnel, and pretty much everything else he could think of. He scratched his head and said, “Gee, I just don’t know – let’s just wait and see, and let it ‘declare’ itself”

Now, I’m no Doctor, but that just seemed like the dumbest thing in the world to do, so as soon as my usual doctor arrived back, I saw him and he said we should consult with a Neurologist. We looked at getting a private specialist involved, but the wait times were almost as long as my Doctor anticipated that the public system would take, so he booked me in with Auckland Hospitals Neurology department for the earliest that they could see me. He suggested it could be a few weeks.

Meantime, my feeling was, that whatever this thing was, it wasn’t something normal or ordinary, otherwise the two doctors I had seen would have had some clue as to what it was. So it was my belief that we had to act as quickly as possible as surely the sooner something ‘strange’ is diagnosed, the better the outcome.

So with this in mind, whilst waiting for the Neurologist appointment to be confirmed, I booked myself in to a hand therapist – Hands Out West, in New Lynn.

The Therapist measured my grip strength and it was at 12 kgs. She said that if I was recovering from a hand injury, they would recommend that I not drive until my grip strength had reached at least 12 kg. That was a bit of a shock to think that I might be getting to a point where I wouldn’t, or shouldn’t, be driving. The Therapist couldn’t come up with any explanation either, so she booked me in with an Orthopaedic Surgeon. It was a couple of weeks before I could get an appointment with John Mutu-Grigg. By this time we were into April of 2019.

When I met with John, he did a few strength tests on various limbs and he said we really need to do a nerve conduction test – he said that will determine whether this is a Neurologists thing to deal with or ‘his stuff’ – he said “you really want it to be my stuff”.

The nerve conduction test was booked in with Dr Richard Frith and I rang him to see if there was any way we could get an appointment fast tracked. He had originally said it could be a couple of weeks, but he was really obliging and managed to get me an appointment within a few days’ time, last appointment for the day at 5:30pm.

Meantime, I had a call from Auckland Hospital and they said they had an appointment arranged with me for a couple of days’ time to see a hospital appointed Neurologist. I was really surprised to have heard from them so quickly – my appointment with him was on Wednesday and my nerve conduction test was on the Thursday.

I met with the Neurologist and he did a few tests, tested my reflexes and noted that the weakness in my hands were ‘moderate to severe’ (take note of this term – it’s important later). He also noted that there was ‘mild’ weakness in my legs and in my arms.

This surprised me, because at this stage I really only felt the symptoms were in my hands. I hadn’t twigged that the clumsiness could be a symptom of weakened legs.

The Neurologist also noted an absence of reflexes at the elbow and partial loss of reflexes at the knee and ankle.

He told me that he believed I was suffering from a condition known as CIDP. He explained that it was very rare, but that there were some treatments available that were often reasonably successful, but in order to confirm the diagnosis, he would like to have a nerve conduction test done. He warned me that it could take some time to get an appointment.

I was able to tell him not to worry about the timing, I had a test booked for the very next day. I did wonder however, whether the parameters of testing might differ, depending on whether the testing was looking from an Orthopaedic Surgeons perspective or from a Neurologists perspective. When I presented for the test, I explained to Dr Frith that we had a suspected case of CIDP, just in case that altered the direction in which he might be looking.

The test consisted of sticking needles into various parts of my body and applying electrical impulses into the needles and measuring the reaction time along lengths of the nerves. Dr Frith was collecting and analysing the data as we went, so right there and then he was able to tell me that there was evidence of demyelination of the nerves and he concluded that the Neurologists diagnosis of CIDP was supported by the nerve conduction test.

At this stage we were now near the end of April and I had a follow up appointment with the Neurologist on 1 May to discuss the results of the nerve conduction test. Meantime, however, we now had a confirmed diagnosis so I started googling CIDP frantically.

It was a little daunting, but I clung to the fact that most of the information I read, talked of a 70% success rate, although what constituted ‘success’ seemed to be quite different from case to case. What I did pick up on though, was that it was often stated that success was largely determined by how soon a diagnosis was made and how quickly treatment was started.

It was only a little over a week before I was due to see the Neurologist, but I figured that we may as well get a head start on treatment – the sooner the better right, so I emailed my GP and explained that the diagnosis of CIDP had been confirmed. He emailed the Neurologist who then rang my GP and said let’s start on 60mg prednisone. So this was started in the last week of April.

At the meeting with the Neurologist, he said we’d start off on prednisone 60mg, as well as azathioprine and he’d see me again in 3 months. I asked whether prednisone was the best mode of treatment as I had read about IVIG and Plasma Exchange. He said that most people respond well to prednisone and that it was a lot cheaper. He said it’s very difficult to get approval for IVIG as it’s very expensive and he said plasma exchange is not used very often. He said the azathioprine is designed to work in accord with the prednisone, providing a longer term suppressant effect to the immune system.

After this, I started doing some really intensive research and had read pretty much everything there was to read about the condition. Three pearls of wisdom became apparent, courtesy of Dr Kenneth Gorson. I watched a lecture that he conducted where he outlined the 3 proven methods of treatment (of which azathioprine was not one) and he outlined the mistakes that Neurologists generally make when treating this condition.

He said that they:

  1. A) undertreat – prednisone, for example, is proven to be most effective at a dose of 1mg per kg of body weight. My bodyweight at the time incidentally, was 84kg.
  2. B) they don’t monitor results often enough
  3. C) they persist with a treatment that doesn’t work for far too long.

His advice is that you must treat aggressively, monitor for results and if the patient doesn’t improve, or if they decline, switch to a different form of treatment very quickly.

So it seemed my Neurologist was doing all three – undertreating, not monitoring, and if he wasn’t seeing me for 3 months, how will he know if the treatment was or wasn’t working, so he certainly wouldn’t be able to switch treatment if needed.

I visited my GP, raised my concerns about undertreating and said that if we’re going to do prednisone, let’s do it right and do the dose at 84mg. I mean, if after a while we found that the treatment wasn’t working, we don’t want to then be saying “well maybe the dose wasn’t high enough” – rather, lets hit it hard right up front. After all, Dr Gorson said that the key is to treat early, treat aggressively and monitor often. So my GP emailed the Neurologist and pretty much asked permission to increase to 80mg. Meantime though, I increased the dosage myself anyway. The Neurologist responded shortly after and said he didn’t really feel it was necessary but said it shouldn’t do any harm as long as we monitored for side effects.

As the weeks went on my condition gradually worsened. By mid-May I was having trouble walking, I was struggling to dress myself and stairs were off limits. I could no longer drive. By my 52nd Birthday on the 27th of May I had moved in with my 83 year old mother so she could cook for me, help me dress and cut up my food.

I run my own business so I had to get in to work each day – I was taking an uber to and from the office and the only thing I could actually do when I got there was clear emails, but at least being in the office for a good portion of the day meant that I could keep an eye on things. I feared that if my staff saw me go completely absent that they might think the worst and start looking for jobs elsewhere, so it was important to maintain a presence at the office.

It was pretty clear to me by early June that the treatment was not working and that I needed to shift to IVIG treatment. I got in touch with my GP and got an appointment arranged with the Neurologist.

At the meeting I explained my concerns and said that I felt we needed to move to IVIG. He said “Well it’s very expensive you know, I doubt we’d get approval for it.”  He then said let’s examine you and see how you’re progressing. He sat me on the edge of the bench and did the same tests he had done a few weeks prior. He had me hold my hands out straight and he pressed down on my fingers whilst asking me to resist as much as I could, he did similar strength tests with my arms and my legs.

He sat back and said “Well your condition hasn’t worsened at all.”

I was gobsmacked – I said to him “Now hang on, the last time I saw you, I drove here by myself, I dressed myself on that morning and I cut up my own food. This morning I had an uber driver bring me here and the driver had to open the door for me, not out of courtesy, but because I physically couldn’t. I was fed and dressed this morning by my mother and you’re trying to tell me my condition hasn’t worsened – well I can tell you, that your method of measurement is seriously flawed!”

He stammered for a bit and said “Well, I’m looking at my notes here and at the last measure, your hands were “moderate to severe”, and I’d still classify it as “moderate to severe” “.  Seriously, as far as a measurement scale goes, that’s a bit like saying “on a scale of 1 to 2…”

I said to him that I think it’s fairly clear from any practical perspective that the prednisone IS NOT WORKING. I said that I want to try IVIG. He said (again) “well, you know it’s very expensive, it’s over $9000 for a treatment.” He really wanted me to know how expensive it was!

Now, I’m a fairly pro-active sort of person (in case you hadn’t noticed), so I’d already done a bit of research. I’d printed out from the Blood Service website the form that a practitioner can submit to the Registrar of the Blood service to get urgent approval for IVIG. I handed the Neurologist the form and said “this is what you’ll need to make the application – they can usually approve, under urgency within 24 hours, please make sure it is for the recommended loading dose of 2grams of IVIG per kg of my bodyweight.”

I had a call a couple of days later from North Shore Hospital and was booked in for IVIG on 17 and 18 June, a total of 168grams.

On the day of the infusion my Mother drove me in and the nursing staff were absolutely wonderful. The process took two days, 8 hours each day and I just sat in a reclining chair the entire time, hooked up to an IV line into which the IVIG solution was pumped.

Let’s divert slightly, and talk about the grip strength meter that I bought a while ago. One of the pearls of wisdom that I had read about early on was that grip strength was a really good barometer of a person’s overall muscular strength and well-being, and in particular, with a condition where the loss of muscle strength is gradual, measuring grip strength gives a really accurate representation of the improvement or decline in strength of the body over-all.

Early on, prior to the diagnosis, the Hand Therapist had measured my grip strength at 12kg. When I had received the diagnosis, I bought myself a grip strength meter and everyday I have charted my strength since.

It showed a gradual decline, with that decline continuing over the period of prednisone treatment. All the way down to 3kg of grip strength.

This data is how I can be so confident that my strength was declining, even though the neurologist was trying to tell me I wasn’t getting any worse. You can’t argue with data, right!

On the day of the IVIG treatment my grip strength was 3kg – less than a 3 year olds. Everyday for months prior my strength had been decreasing steadily. On the 20th of June, just 2 days after the IVIG treatment, my strength increased for the first time since this all started. A modest increase to 5kg. Then a couple days later it was at 6kg, then a couple of days more it was 7kg. This was huge, at 7kg I could actually do up buttons and hold a butter knife. This was a massive relief – at last, treatment was working and I could feel myself getting better. I could start doing normal tasks again.

Within a couple of weeks my life was totally transformed, I could dress myself, feed myself and walk to the train station rather than rely on an Uber.

Within a month I felt ready to return home. My grip strength was 20kg at this time.  As much as I so appreciated my mother’s help, it was a huge thing to be able to return to my own home and start getting back to normal.

I was amazed at the improvement in strength. I felt terrible though, I’d gained a lot of weight and the steroids had really taken a toll. Everything I had read was that if steroids don’t work, stop taking them, but the Neurologist had said I should keep taking the steroids in conjunction with the IVIG.

I really felt that this wasn’t a smart move, but just to be sure, I emailed Dr Gareth Parry (through the GBS/CIPD support group website) and asked his opinion. He said that without examining me, he couldn’t be sure, but from what I described it sounded to him as though I should definitely be stopping the prednisone.

That was good enough for me. In conjunction with my GP’s help, I started weaning off the prednisone. I didn’t ‘fess up to the Neurologist about this because I was concerned that if he took umbrage at me going against his advice, he might not be helpful in arranging subsequent IVIG treatments.

After weaning off the prednisone, my strength continued improving, but all the research I’d read had suggested that multiple rounds of IVIG were usually required to treat the condition, typically at 4 week intervals, and the frequency of the interval should be either increased or reduced depending on whether the patient is still improving by the end of the interval, or beginning to decline near the end of the interval. For example, a typical treatment regime might be to start with a loading dose of 2grams IVIG per kg of body weight, and then to monitor for improvement. If effective, the improvement is monitored and a subsequent dose administered at 4 weeks. Near the end of the next 4 week interval, if the patient is still getting stronger, the interval might be extended to 5 or even 6 weeks, but if the strength begins to decline near the end of the interval, the interval may be shortened up to say 3 weeks, or 2 weeks. If improvement is constant, the interval might be extended out and out till eventually it is stopped altogether. The key is constant monitoring.

So I was fully expecting to hear from the Neurologist sometime prior to 4 weeks after the first treatment to arrange round 2 – but nothing – not a word. So I went through my GP to get hold of the Neurologist and arranged a meeting. He seemed surprised that I expected there to be another treatment – what? – did he think this was going to disappear after just one treatment? Possible, but that would have to be the most exceptional case ever heard of.


Of course, I got the lecture again about how expensive the treatment is. I swear, you’d think he was paying for it out of his own pocket. Nevertheless, he conceded, and he applied for a second dose and that was arranged about a week later, around 5 weeks after the first treatment. My concern was that if we didn’t get the second treatment in quickly enough, we might lose the efficacy of the original loading dose – after all, there’s a reason they recommend a loading dose.

Once again, I’ll take a slight diversion here and talk about the azathioprine that the Neurologist had also prescribed. Many studies have been done where azathioprine has been used in conjunction with prednisone and with IVIG as well as studies where prednisone and IVIG have been done alone. Unfortunately the main study in this area had some design flaws so the data isn’t all that reliable, but at this stage there is absolutely no evidence to suggest that azathioprine is effective in treating or aiding the treatment of CIDP.

Nevertheless, the Neurologist had prescribed it- so I took it- but it gave me really severe nausea. I stopped taking it for a while but the Neurologist had said I really needed to keep taking it as it is a second line of defence. So I resumed it again. The early hours of the morning after resuming the axathioprine, I woke up with the most horrendous stomach pains. I had never felt that ill before in my life. I sat on the toilet and seriously thought it would be far more pleasant to just curl up and die. The next day I couldn’t get out of bed, the pain was emanating from the upper part of my stomach, above where I imagined the entrance to my stomach was. I have a small hiatus hernia so I wondered if it was something to do with that. I managed to call my GP and made an appointment and with some help made it to his office. I told him I had just resumed azathioprine the night before, so my GP did a search of the doctor’s version of google and said “No, it can cause nausea but not stomach pain like this”. So he decided it was acid reflux and prescribed a stronger dose of omeprazole and pain killers. The pain killers really helped but I wasn’t convinced of his diagnosis.

I came right after a couple of days but wasn’t keen to try resuming the azathioprine again just in case, but after a week, the memory of the pain had faded so I tried again. Within a couple of hours I was in excruciating pain, but this time I threw up, clearing my stomach and didn’t suffer quite as badly. But it did confirm for me that azathioprine was the culprit. I did a bit more research on it, and it turns out that in some cases it can cause inflammation of the pancreas, a condition which can leave you feeling like death and was consistent with everything I had felt. Acid reflux, my foot!

When I next saw the Neurologist I explained that I just couldn’t tolerate the azathioprine, so he prescribed a cousin to the drug, called methotrexate, which he said will have the same effect, effectively to calm down the immune system.

Back to the story about the second dose of IVIG – after the second dose, near the end of July, my strength continued increasing and life was really starting to get back to normal. But then by the end of October I noticed that my strength gains had started to level off and then to decline slightly. I certainly couldn’t complain about this, because at around 40kg in strength there really wasn’t anything I couldn’t do that I had done before. I was riding my bike again, I was going to the gym again, I began walking on weekends with a hiking group and I was gradually losing the fat that the prednisone had very kindly deposited about my face and midriff.

I was aware, however, that all the research suggests that multiple treatments of IVIG are generally needed in most cases to get the condition under control. I think I’m very lucky to have responded so well to treatment – most people taper off in strength much sooner after a treatment, so to last 3 months is great.

So I contacted the Neurologist again and explained that my strength was starting to decline and that I felt that a further dose of IVIG was in order. It had been 3 months since the last treatment. I feel that we were following the guidelines fairly well here, because we were doing the next dose at the point at where my strength was only just starting to taper off. What really surprised me though, is that without consultation with me, the Neurologist booked in the third treatment at a much lower dose – just 66 grams (should be 88gms).

From what I had read, the accepted protocol is to either reduce the frequency, or to reduce the dosage – not both. So the third treatment was a bit of a token gesture. Nevertheless, it seems my body was responding really well, even to the small amount of IVIG and my strength began improving again within days of the third treatment.

Within a couple of weeks I was back up to around 42kg in grip strength – about where I had got to a few weeks previous before the strength started to taper off (it had fallen away, pre-third treatment, to about 35kg).

According to Google a 50 something year old male has a grip strength anywhere between about 40 and 50 kg, so you could probably reasonably argue that I was back to full strength, but the problem is I never knew what my grip strength was prior to getting sick, given that I only started measuring from well into when I was suffering symptoms. I did feel, however, that I still couldn’t lift the same weights that I used to at the gym. So I had a genius idea on how to figure what my grip strength was likely to have been before I got sick.

I used to arm wrestle occasionally with a very good mate of mine, named Glenn. We’d done this for years ever since we were teenagers and the most recent time was around October 2017. (I remember the date as there was a party, and we had photographic evidence – as drunk as we may have been). Over the years, we were always very evenly matched – sometimes Glenn would win, sometimes I would win. On that last occasion, Glenn had won, but only just.

So I rang Glenn and said, “I have a wee test I’d like you to take”. I had Glenn test his strength on my grip strength meter and it came in at 52kg. From that I can fairly reliably say that my baseline strength should be around 52 kg, so I do believe I still have some way to go yet.

So this is where I get all pseudo clinical – Like I said before, I’m no doctor, but I’ve read an awful lot about this condition, and where as the doctors have to concede, that in certain areas they just don’t have the answers, I have the advantage that I can just make stuff up to fill in the blanks. Having said that, here’s my possible explanation for how the recovery is all working.

The immune system has gone off-road and has started to attack the myelin coating of the nerves. This demyelination process causes damage to the underlying nerve and disrupts the signal along the nerve. It seems that after a dose of IVIG, the immune system is overwhelmed by the influx of normal antibodies, and its behaviour starts to be modified something along the lines of ‘normal’. The nerves get some respite from the damage being inflicted on them, and the myelin and the underlying nerve recovers fairly quickly and the nerve starts sending signals again through to the muscles.

Some of the damage though, will have been more severe and certain nerve fibres have died away completely. Now, it seems that peripheral nerves have the ability to regrow, and they do so from the nerve root. This process of re-growing, however, is a lengthy one and I’ve heard it cited that it can take up to a couple of years for a nerve to regrow all the way from the root, right the way out to the extremities.

So my take on all of this is that in the absence of the immune system attacking the myelin on the nerves, the damaged nerves are repairing fairly quickly and are resulting in the majority of my strength coming back, but the dead nerves are going to take a lot longer to regrow. That final 10kg of strength that I’m missing, I believe is the result of the dead nerves. The 39kg I got back, is the damaged nerves starting to send signals again.

My fear is, that if the immune system goes back to attacking the myelin, that the new growth will probably suffer first, and how long before the nerve root gives up on sending out new growth if it constantly gets destroyed in a yoyo effect of attack and then respite, then attack and then respite.

Hence I feel the need to be extremely vigilant with detecting when there is a decline in strength, and getting back in for a further round of IVIG, so as to sit the immune system back down on its butt and to tell it to back off.

Of course, I may have the science behind this entirely wrong, but then the medical fraternity are quite openly admitting they don’t know exactly why IVIG works, but just that it does, in most cases, when administered in certain ways. It may also sound like I’m a little critical of the Neurologist who has treated me, but in all fairness, he recognised the symptoms very early on, and for that I’m extremely grateful. I guess, in his defence, the only thing I can really fault him with is for being extremely defensive of the public purse, and ensuring that not a dollar more is spent on IVIG than absolutely has to be.

So regardless of the science, there seems to be a process by which this can get better. I honestly believe that the success to date of my treatment is largely due to diagnosing the condition early and to acting really quickly to get into treatment.

I’m very aware that there are people who have not been nearly as lucky with their journey, and my heart goes out to you if you find yourself in this position. If you want to talk, you’ll be able to find me through the support group.

I hope this story will be helpful to anyone else who has been diagnosed or anyone searching for answers to the best approach to treatment – or maybe it will be helpful to someone currently struggling to get the best out of their medical practitioner. I really feel it’s important to be very pro-active and make sure you know more about your condition than your Doctor does – it’s a rare disease and I’m afraid not all Doctors or even Neurologists are as clued up as they could be.


Mike Whyte

Auckland, January, 2020.



Bob Stothart

Losing One’s Grip

First Published in the Listener, September 1979, R.A. Stothart of Wellington chronicles an illness that temporarily put him in the land of the disabled.

As a physical educationist by training, a recreationist by occupation and a games player by inclination, I was dismayed to realise that I was gradually losing strength in my arms and legs. At first I thought it must be fatigue – I had been painting my house and shifting of extension ladders and scaffolding was tiring. But a round of appallingly bad golf and the persistent fatigue, convinced me that something was amiss. A visit to my doctor and then to a neurologist confirmed that I had polyneuritis (Guillain Barre syndrome), a strange and perplexing neurological disorder which inhibits the transfer of messages from the brain to the motor neurons which move the arms and legs. The condition is relatively rare although about half a dozen cases are seen each year in Wellington Hospital. Curiously this disorder does not affect the sensory neurons and throughout my stay in the world of the disabled I maintained full sensory perception. There is no pain, just mounting frustration and dismay as physical control, mobility and independence diminish.

Polyneuritis is characterised by gradual loss of strength in arms and legs (in severe cases, the muscles of breathing) until some unpredictable bottom plateau is reached when gradual improvement occurs. The process may take a few weeks, a few months, or in some cases, more than a year. The usual treatment is rest – almost every case recovers with or without medical intervention.

In my case the gradual loss of strength, and hence of movement, was frightening. I was desperately afraid of immobility and I relinquished my independence parsimoniously. I learnt to adapt as strength and control faded.

I continued to drive my car even though the operation of the handbrake was awkward, but when I needed to use pliers for added leverage to turn the ignition key I decided that I should stop.

I had difficulty at first in lifting my arms above shoulder level or having sufficient strength in my fingers and thumbs to pull my socks on. I could not handle zips, turn a door handle, do up buttons, hold a book, turn pages of the newspaper, operate a transistor or help in any way around the house. I fell, or more correctly, collapsed a few times in a heap as the muscles holding my skeleton in place could no longer prop me up against the pull of gravity. I was unable to dress, undress or to feed myself.

Household organisation had to revolve around me and with a working wife and two busy secondary school children I knew that I was demanding much of their time and patience. I listened to them doing the household chores with feelings of annoyance and inadequacy. I watched a year’s chores mount up outside the house and in my impatience to recover I often passed on my frustration and irritation to my family.

I cast aside professional matters except that I always wanted to talk about them with colleagues and friends. But I couldn’t cope with professional reading or decision-making. I deliberately diverted my mind towards optimistic and pleasurable thoughts. I knew I would recover in time and this sustained me and eased the black periods.

But I was bedevilled by thoughts about loss of confidence and diminished physical prowess. Would I lose permanently the ability or the confidence to learn new physical skills? Would I lose enthusiasm, energy, concentration and the ability to communicate? What was happening to my body through 12 months of enforced idleness? Would I be able to play golf again or ski or dance? Would I be seen by others in future as suspect or somehow below standard and hence vulnerable and doubtful? At times I was acutely embarrassed about being seen publicly as a disabled person but embarrassment passed as I realised that the alternative was loneliness and increased depression.

At first I resisted the aids offered by the occupational therapist in my optimistic (but vain) belief that next week I would begin to improve. I had to learn to let people help me: to let people invade my personal space. It was not a question of embarrassment but one of desperately wanting to retain my independence.

One morning after my wife had gone to work and the children to school (and before I realised I was as weak as I was) I had a bath and found I couldn’t get out. In one flash I glimpsed my geriatric future: I saw myself as old and fragile. Eventually I managed to roll out, crawl to the bedroom and force myself up onto a bed to await the return of the family. Child-like and fragile, I contemplated once again an inactive future, I saw myself as a constant burden on other people, demanding considerable time and effort every day.

Grip strength faded so that holding a knife and fork became impossible and I needed to be hand fed. This was the greatest loss of independence; to be hand fed by one’s family requires a change of attitude I was slow to accept.

The bottom of the plateau was reached after five months deterioration that resulted in almost total loss of movement. At this point I spent some weeks in hospital. Through this low period I experienced the quick panic of claustrophobia. I felt trapped in my body, unable to react except inside my head. I felt as if my head was on someone else’s body. I didn’t recognise the body I saw and I certainly didn’t want to claim it.

I was confined to a wheelchair for about three months and I learnt much about the problems of the disabled in relation to transport and access. But I learnt even more about myself. As a physical educator, I had frequently worked closely with disabled people and regarded myself as being able to establish good rapport and to empathise effectively. As I became increasingly disabled I realised that I was in fact, prejudiced. Intellectually, I could cope, but as I was thrust inexorably into the realms of the disabled, I recognised that I didn’t want to be like them.

When I fully accepted that I was disabled, I enjoyed regular sessions of physiotherapy and the constructive help and advice of the occupational therapist. On one occasion, the therapist produced a swinging arm device which enabled me (after some practise) to feed myself again. This was a monumental leap forward in regaining my self-confidence and independence.

The device fitted easily on to my wheelchair but for some unexplained reason the wheelchair was recalled and I had to use any available chair. The feeding arm and tray did not fit these chairs and I had to be hand fed again. A change of wheelchair may seem minor but to me it was the most important thing in my life for three days and I was very depressed until the original chair was returned, thanks to the efforts of physiotherapists and the occupational therapist.

One of the treatments for polyneuritis is a course of steroids. Not all patients respond to this treatment, and some receive an initial boost and then relapse. In my case the effect was rapid and dramatic. From almost total inertia I perceived significant sensations of movement within 12 hours of the first injection. The first week of this treatment was joyous, I could feel sensations which had been absent for months. I could change position and sense recovery.

Recovery has taken a long time me. As I achieved greater control, I progressed from the wheelchair to elbow crutches, to a walking stick. I had to measure each footstep and to be careful about uneven ground. Heaving myself on to a bus was an effort while grip strength was still weak and once I didn’t quite make it: As I tried to step on to the bus I lost grip and leg strength and gently rolled back into the gutter. It was 10.30 a.m. and I am sure that the driver and passengers thought I was an early morning drunk.

Throughout this experience I was greatly sustained by the reassuring advice of the neurologist (and hospital staff and support services) and particularly by colleagues and friends who dispelled my loneliness and occasional depression and introspection.

My family were models of equanimity and reassurance. No doubt they view me now from a different perspective but like me they learnt much of value.

I learnt about myself, but, more particularly I learnt about the disabled. I am convinced that as a principle the disabled should have a much greater say in the management of their own, everyday affairs, and most disabled people wish to be treated ‘normally’, particularly in inter-personal relationships.

Loxley Jensen

A Thorn in the Flesh: A personal encounter with the dreaded Guillain Barré Syndrome and the weary but wonderful climb out of total paralysis to a new dimension of meaningful living.

1985 started off like most other years, pleasant summer, relaxing beach holiday then back to work as an Insurance Rep. However, as the year wore on I felt my body wearing out rapidly. Hold on, I thought , I’m only 55, what’s going on here? Can’t mow the lawns without becoming pooped, unable to hammer in a tack and coming home from work tired—half way through the afternoon? Surely I must be aging prematurely, but at 55? Seems a bit soon! Things were not improving and flu-like symptoms had set in, with severe aches and pains in legs culminating in a week long bout of diarrhoea leaving my body a shadow of it’s former self. This has to be the bottom of the pit, surely things will improve. To encourage this thought pattern, on the 9th July 1985 I urged my weary frame out of bed to sit at table for the evening meal. Well, all this effort to be sociable only to have dished up chicken too tough to cut with a knife! That’s funny, the others are not complaining … Yes it’s only me, barely able to hold the knife let alone cut with it! Feeling decidedly antisocial I was soon back in bed.

Remember those horror dreams where with leaded feet you seem unable to escape the impending doom? In the early hours of the next morning (12.30pm) I awoke thinking I was still in one of those dreams but the dreadful reality was there, I was awake but unable to move. The Doctor was called but until he arrived in the morning, my wife and I pondered this affliction as some temporary thing soon to pass. Our Doctor showed instant concern (he had been treating the diarrhoea to no avail), especially when reflex tests were negative and whilst arranging the ambulance, briefly spoke of the condition being Polyneuritis . “What’s that?” We asked. The reply was to the effect that it was somewhat like Polio, attacking the nervous system and destroying some or all the body’s motor nerves. Two hours later, as my breathing became weaker I was rushed on from our local hospital to the Intensive Care Unit of the base hospital where a lumbar puncture would confirm the diagnosis but to it was attached an unpronounceable French name “Guillain Barré Syndrome.”

(The French struck twice within the same hour that night of 10th July 1985 … I’m not sure which sank first, the Rainbow Warrior or me!!) Needless to say that to this day I have no great affinity for anything French!!

Rather interesting to note that in this day of medical achievement little is known of the source of the disease, diagnosis is totally misread until the damage is done, nothing can be done to arrest it’s attack and it’s ‘wait-n-see’ as to how much body function remains. By the third day the disease had run it’s devastating course, I had gasped my last breath for many months to come for I now had a life support ventilator as my constant companion.

Three days before I had quipped to my wife that I thought the hospital and Doctors’ were over reacting, … not any more! On entering this strange, painful and silent world, I could think little of the future. My dominant concern was to take each day as it came and work through it hour by hour. This principal was to help keep my sanity over the following months. As bodily repair was to be ‘later than sooner’, time proved to me that these words Jesus uttered were indeed true, “… Do not worry about tomorrow, for tomorrow will worry about itself, each day has enough trouble of its own…”

By now tubes and wires were attached all over to keep me alive and I was indeed fortunate to still have my brain and heart (central nervous system) with my eyes the only other moving part. My wife Jocelyn, with my sister Pamela’s help soon worked out that if I shut my eyes they would recite the alphabet with me opening my eyes at the correct letter. Slow and frustrating as this was, especially for those reciting and for when my spelling went astray, but with much laughter from the sideline at times — this was to be our only means of communication for the next 7 months.

For five full weeks the body was in a state of suspended animation with absolute no change or improvement. The medical, in their ‘so-called wisdom’ considered me too far gone to send to Auckland for the plasmapheresis treatment [blood cleansing] so I stayed at the provincial base hospital to be kept alive as long as possible to see per chance I may, even without treatment, recover on my own. Distinct memories of these early weeks were vague as I drifted through the mists of narcotic pain-deadening injections and hallucinating horror dreams with life generally bordering on the point of no return. With Jocelyn’s encouragement on the sideline I had to do my bit and hang in there. During the third week my air intake pipe fell off (as it would do on future occasions) and for a time the noisy alarm was not heard even though an intern was inserting an arterial line into my foot (he was unaware of the significance of the ‘noise’). I had drifted off into unconsciousness, feeling …. how blissful, no more pain … then bliss was over … back into reality, surrounded by the trusty cardiac team bent on my survival! Not fearful to die for I was ready to meet my Heavenly Father, but more concerned that my family could lose me as a result of machine failure or human error … Extremely vulnerable but trusting that somehow we would win through.

A very lonely world that only I could tread. No one could explain what to expect, what, if anything would repair, or how soon? To keep my brain active I would count the tiny squares in the ceiling panels (my main view) then try calculating the number of tiny squares in the ICU ward!! Later I was told how difficult it was for most people to relax and live on a ventilator for any period of time! Here are some of the things that have to be worked through when in this situation: – A feeling of isolation, even from loved ones – total physical dependence – constant physio with lung suctioning every two hours – 2 hourly turns day and night – unable to swallow – unable to open mouth, speak, hear well or taste food – manual bowel function and catheter drainage – constant ‘eye’ contact with the attending nurse! However, this grim tide was now to slowly turn as the climb out of the pit commenced …. “Look.” Said Jocelyn to the nurse, “Loxley’s nostrils are moving!” Life was making a comeback into my wasted, skeletal-like body. From this small beginning was to come some restoration that basically ceased after approximately two years.

As my body slowly and indiscriminately repaired it became less tolerant of ‘attachments’; first the bladder function returned, then full hearing, and painfully my swallow and throat functions restored. It was three months before my first breath but it would be a further 4 months before I was finally quit of the ventilator … then that’s another story, with all it’s psychological hang-ups. Seven months on and now breathing on my own the full 24 hours my scene changed from one-to-one nursing of ICU to the ‘do-it-your-self’ care of the open ward; another battle ground where victory was essential. We very nearly lost the war at this stage with a nasty set back but a providential shift to another ward via the Coronary Unit turned things around and with specialist care, saved the day. Ten months on and it was off to the Otara Spinal Unit for some much needed rehabilitation. Amongst other good things my wife and I learnt the use of a slide-board for transferring and the most wonderful of all, my own head probe. A whole new world began opening up before me, as with this probe I was able to type, paint and turn pages for reading. At last I could express myself, just being able to do something … A giant mental and emotional step forward to recovery.

Regular physiotherapy encouraged along reactivated but badly atrophied muscles and common with this disease, the nerve regrowth is haphazard and uncertain. Whilst Jocelyn was busy at home organising the shower alterations I was hard at work learning to feed myself with an attached hand splint and managed to do so prior to my hospital discharge in December 1986, 18 months on from the onset.

Home at last, what excitement……. but … something is strangely different… I seem so remote from all my familiar things and was unprepared for this situation …. just to look and not able to touch … and I was our ‘Mr. Fixit’ round the home.

Frustrations began to melt as I came to accept the fact that these activities were beyond me and that Jocelyn was ably taking on the Mrs. Fixit role, along with all the other roles we had shared. From the hospital there had come with me various aides such as elbow supported walking frame and leg splints but soon these were redundant as I graduated to a hand-held walker for short walks. Then the commode for ablutions was replaced with a shower chair and so on. Soon other aides began dropping off, I now held my eating utensil in my fingers, the head probe went as I was soon able to type with two fingers and turn pages with my hand. Natural curiosity has helped me achieve such tasks as to operate the stereo/tape deck, play the mouth-organ, clean my teeth, shave and the other ablutions as well as numerous small tasks which Jocelyn previously did for me.

Even though most of the day was taken up with ablutions, physio, eating and resting, there was still an hour or two that I thought could be used more constructively . It was whilst in this frame of mind that a field rep from a Disabled Persons Welfare Society turned up, suggesting that I may be a suitable candidate to be a recipient of a computer (from a trust) to assist rehabilitation. “Computers!” I said. “I hardly know my way round a pocket calculator let alone something as awesome as a computer!” … Well, if the Society was offering, it was up to me to give it my best shot. So began a new and wonderful activity which presented a challenge and a means of keeping the brain sharp and at least two fingers working! I now serve a reasonable use in the community with computer desktop publishing of newsletters, brochures etc for various organisations and businesses.

12 years on and several computers later, life goes on. Most of the time I am wheelchair bound but use the walking frame frequently through the day despite the fact I have no physical strength or movement in feet or lower limbs. My hands do not function well, with none of the finer finger movements possible. We still have our on-going problems. Jocelyn has become an insulin dependent diabetic in recent years and finally I made the decision to enter a rest home as Jocelyn’s health was deteriorating and we were not getting younger!

Now 21 years on, aged 76 and residing in the hospital section of the Rest Home I am starting to feel my age and have slowed down a lot. However I still enjoy reduced hours on my computer, precious time with my loving wife and family and of course the more time I have to enjoy the companionship and comforting counsel of my Heavenly Father.


In ICU With Guillain-Barré Syndrome 1985 style

In 1985 there was no real high tech. ICU as we have today, it was 6 beds in the end of a surgical ward partitioned off and decidedly scruffy.

I entered this situation with the idea I’d be out of here before I had a chance to get used to it! However, this was not to be as by the third day I was being ventilated and these machines could only be monitored and attended to in the ICU section.

The regular ICU nurses were in general a caring bunch and usually it was easy to put your trust in them. The part timers and meal hour relievers were a different story. These I dreaded as they knew nothing of ventilators, suctioning etc. and gave little confidence as they hovered round looking nervous. One regular part timer treated me like a machine. Because I was unable to talk she refused to take the time to allow me to spell out (by opening and closing my eyes) how certain jobs were to be done … Why ask me? I’m only the patient! She would leave the ventilator connection off my trachea whilst she turned her back and proceeded to flush and clean the suction tube oblivious of the fact that I was unable to take even one breath on my own … she assumed I could breath enough without going to the fag of putting the connection back quickly each time… She never thought to ask the situation. On several occasions I nearly went into cardiac arrest through this procedure. These relievers were obviously NOT trained in ICU care and practice, I hope it is different these days!

Some house surgeons were just as incompetent as the relieving nurses as this illustration will show.

A particular house surgeon was busy fitting an IV line to my foot when the ventilator connection popped off, which in turn set off the alarm bell. The only ICU nurse in the ward at the time was busy at the other end of the area and looked up to see what was happening. On seeing the young intern bending over me thought everything was under control and carried on. I gazed at the young chap and wondered why the lack of attention … then I passed out into oblivion! I came round with the cardiac team working on me looking very concerned over my welfare. The intern was nowhere in sight … apparently he did not know what the alarm was for, not having heard it before!! So you see how the patient can become very apprehensive over certain people coming near the bed or too near that life saving machine the ventilator!

Don’t get me wrong, the regular ICU staff were most dedicated and despite the precarious situation I was in, there were times when we had great hilarity, especially between my wife, our daughter and son in law and the nurses. The nurses called my wife “mother” as she was allowed to be beside my bed most of each day. I was allowed to have a large poster of the “Remarkables” stuck to the ceiling above my head which I greatly enjoyed looking at along with a few others but then came an officious new charge nurse who tried to clean up the joint and make it more clinical so all my posters had to go …. after much complaining from the other nurses and my family she reluctantly allowed me to keep the “Remarkables” … but I had to take it with me when I left the ward. That poster helped my sanity for the 7 months I lay in that one spot.

The great loss of all those things we take for granted was so hard to bear and those who understood were eagerly looked for I tell you. The lass who would manually pick the marbles out of my bowel, changed my urine soaked bed, suck the junk out of my mouth, stop in passing and give me a wee kiss on the cheek and a cheery grin, shave me with gentle hands, rub cream on the parts they knew were sore. Those who understood how much I had lost showed it in their approach to my care. As the patient I could easily discern the genuine nurse.

I was reduced from a normal active Mr. Fixit to a do nothing-say nothing person. How I longed for my continually parched throat to have cool water down it. I watched as nurses brought bottles of cool clear distilled water into the ICU (for what I never did find out). Nothing was to pass down my throat for months. Sustegen and various other fluids were my food and all that stuffed down the nasal gastric tube straight into the stomach … would I ever enjoy the taste of real food again? The pain in my body especially hips and buttocks, would this go on forever? Turning every 2 hours didn’t ever seem frequent enough. Those who could see the discomfiture would frequently break the rules and give a wee shuffle of the body to ease the pain. Hearing was difficult as the ear mechanism seemed to have frozen in a shut position at the onset of paralysis and this did not help the communication. Visitors and consulting Drs. and Physicians would stand at the end of the bed and I was unable to hear what they were saying so I didn’t get to spell out (with my eye alphabet language) how I felt about things I was only told what they (medical) planned to do which in general was to keep me alive long enough to see if I recovered.

I guess nurses and doctors don’t have the time but that is what is needed when nursing GBS people. The condition is devastating to the human system relying on a machine for ones very life …. scary to say the least and most of us would have no idea what to expect so would feel absolutely totally insecure and isolated, locked in this inert body but mentally completely active. We are not thinking about who’s caring for our home, who’s feeding the animals, what will I do next year? No, it’s can I get through the next hour without too much pain, will the ventilator tube fall off and no nurse be handy, will the nurse remember my insulin shot, will the physio be my regular and tilt the bed enough to get the needed result and so on, hour by hour through the day.


Neil Hickland

Guillian-Barré – my experience

I took early retirement at age 50 from post office.My wife Aurea and I have 4 surviving children (our oldest,a son) passed away at age 25 from Fredricks Ataxia and a heart defect.

We purchased a 50 acre block at Gladstone ,Wairarapa.We sold this after 8 years and bought a 33 acre block at Carterton Wairarapa, farming sheep and cattle,mostly trading,and breeding eye (heading) dogs for our own use,and selling surplus pups.This resulted in both of us giving up golf after many years!! Not because of work,but loss of interest in playing reguralily. I was employed for 3 years and 6 weeks shepherding on an hourly,and as required , arrangement until I was dealt this difficult hand to play!!! It all began -with diarrhoea on 19 07 00. On 25 07 lifted sheep,thought wool had fallen out (as happens with sheep stressed).Looked at hands,no wool,just “a funny feel in fingers”.finished worked afternoon,had dinner,awoke 5am “skitters’ gut pain,felt weak,difficult to get into truck,had neighbour(who is also good friend) come to work to assist with lambing beat.Couldn’t get on 4 wheeler,so rang boss, friend lifted me into truck,he drove me home . 26 07 Aurea took me to the Dr. By then couldn’t lift arms above shoulders.

His 1st questions were had I been drenching stock etc.? No. Take your jersey off. I B well cant. Hop on bed. Cant. Sit then,will do reflex tests,blood pressure ,check heart etc ,for stroke!! No reflex,not stroke.

Believe you have a rare disease,but nearly all recover almost fully,it`s called Guillain Barr`e.I will give you steroids to take for a week.You will have to be reviewed . When will I see you,next week? I think it may be sooner than that,I`ll give you a letter to the hospital,if you deteriorate go straight there. How will I know when that is?. You will know,you will have trouble with balance etc.

27 07 00 Thursday – slept well ,went to toilet,couldn’t lift off it!!! What the!! Aurea lifted me off,dressed,tried to prepare breakfast but couldn`t open kitchen cupboard!! felt weak. Aurea went to farm 2k away.When she got back after 1 hour, I had rung son-inlaw to take me to hospital,as couldn’t get off lounge settee. Arrived A&E.11am, Dr checked all over again,told me get off bed. I Said ‘cant’. Ok I`ll not let you fall. CLUNK,straight on floor and 98kg too heavy for him and Aurea to lift.He admitted me to medical ward .

Friday done lumber puncture,successful only after Registrar took over when 2 (nurses?) failed. Result was blood tainted,but Wellington prescribed Haemoglobin (I tkink) ,started 8pm,completed 2am Saturday!!!

Saturday,ambulance to Wellington,arrived 1pm,seen by neurolgist,done tests,most of which were -1 to -5, -5 being no reaction!! He told me near full recovery,would be weeks and months rather than days or weeks. On haemoglobin for mandatory 5 days, massive back aches,virtually paralysed from neck down,and constipated !!!!

On following Tuesday,had the electric shock test, Yeeeow!!!

Neuro believed had been afflicted longer than symptoms appeared !!

Wednesday returned to Masterton hospital by ambulance .Still constipated,in isolation ,as is everyone returning from Wellington hospital due to the ***** (resistant bug).Thursday,after 12 days of constipation,finally “Bingo”.Then began the introduction of physio.

The swimming pool was the best relief of paralysis,as I could walk alone holding the side rail!! They wheeled me to pool,put me on sliding hoist,lowered into pool,then return after excersing.As an aside we have since had a new hospital built,but horrors,no pool!!!Aurea used to come each day and would dry and dress me,return me to ward. She also went to physio daily,I think to encourage physio in saying “just 1 or 5 or 10 more.(I sometimes used to “refuse”I know they didn’t really understand how fatigued I got.(Heard that before eh ?) Early on ,after about 1 month,I could lift my glasses, tried to lift half kilo on pulley, but hands slipped off handle.We decided to tie them on,so bandaged them on!! At that time couldn’t raise arms to shoulders. Physio progressed till I could “shuffle” about 10 metres unaided if no obstruction on floor such as a mat or electrical cord ,because I couldn’t lift my feet off the ground.

On Friday 02 09,while being supported between paralel bars,I dropped and hit my head on floor,dazed and no feeling for about 2 minutes!! Doctor checked me out,said could go home for (2nd) weekend leave.

Woke 6am,turned my head sideways and white lights flashed through my eyes!!! Tried again,same.Called hospital,got ambulance,Dr said balance affected by “little ball-like things being dislodged from small hairs inside he ear canals.Said they would likely re-settle,no damage done. 15 09 head scan in Wellington (hospital but covering) and all ok.Occasionally get small flashes if I turn head suddenly,but not a problem.

Released from hospital 19 09, travelled weekdays to hospital for physio and shower. Able to walk up steps out of pool 29 11 and shuffle to shower.Marvellous!!!Pool therapy ceased 08 01 01.Occupation therapy had steps (75 mm high ) built for entry into house with hand rail. I could only use them by going sideways one foot at a time (lost sweat at that!!)Also installed wet floor shower large enough to take wheelchair and another person .(I was using wheelchair when released,then onto “walker”.I couldn’t get off a chair,so Aurea (or whoever) would lift me (Cuddly too)!! O.T. also provided raised toilet seat, shower stool,sock assist,and hand held “lifter” to pick up things on floor etc.

About 5 months to touch my thumb to my small finger,about same time to lift heel off bed. Drove truck at farm 26 Dec ,(reaction clutch too slow, brake to accelerator same.Car at farm 02 Jan 01,but not confident to go into town until about end January.It took about 6 months before I would drive any distance alone because of fatigue ,scared would drop off to sleep (which I did a couple of times,but Aurea was keeping me under close watch (And still does) I still have difficulty climbing over fences,stock yards etc, getting up off the ground, cant hold a golf club with enough grip to hit a ball any distance.Can’t do vacuuming,ironing,washing, (& never have ha ha) but can use a chainsaw,hammer shovel etc.Must be the thicker handle allows better grip.

My hands and feet seem to be my lasting outcome of this affliction. Aurea and I have made ourselves available as visitors to newly diagnosed patients in hospital (or anywhere else) and have had good press through the Wairarapa Times-Age.When first in Wellington Hosp,neuro surgeon informed us of GBS,we contacted Jenny,who got Peter Scott to contact us.He arranged to come over from Palmy.What an experience that was to us to see the outcome of a sufferer,as at that time I was home,but hardly able to walk.To Peter,thanks and will have contacted you before this appears (if it does) The Wairarapa has had earlier this year 3 confirmed and 1 suspected new cases.We are renowned over years for high incidence of GBS.Since the publicity recently,Wellington Regional Public Health,Lower Hutt,are researching the cause.Many believe the flu injection is responsible.Of the 6 people I have spoken with here,I am the only one who had the injection!!(one week prior) Aurea and have been having them for about 25 years.

Last year I had the injection Monday,was in hospital with abscessed pancreas Tuesday!!! The injection could not react that fast (confirmed by specialists!!)

Good luck, enjoy what you have while you can.


Chris Gambell

Chris Gambell tells us of his encounter and his treatment at Wellington Hospital…

I contacted Guillain–Barré syndrome in August 2006. This syndrome was something I had never heard of before. It started about 2 weeks after a bout of flu, which left me with a high pitched cough. I woke up feeling tired with pins and needles in my legs that continued all day. The following day my legs were the same and my hands had also developed pins and needles. I had difficulty holding things. My days work plans changed as I would have been driving out of town. I wisely decided to go to the doctor instead.

The result of this visit was that I had a normal temperature and pulse, but no body reflexes.

Damian Johnson was not my usual GP but was working in the practise for a year. He had a few suspicions of what could have been wrong. He phoned home later saying he had been reading about a possible illness, Guillain–Barré syndrome and if I felt any worse to ring the emergency doctor. Saturday came and I could barely walk or get dressed. I was feeling helpless and worried. My daughter Rochelle and wife Leanne wasted no time in getting me to Nelson Hospital.

My doctor in A & E ran tests including five unsuccessful spinal taps but concluded that I had GBS. I wasn’t going home today! My deterioration continued to be rapid and on Sunday I could not feed myself or walk, and my oxygen intake was diminishing. Dr Fry stared me on Immunoglobulin intravenously. He decided that it would be a good idea for me to be moved into ICU. As it turned out it was necessary and I was put on a ventilator that night. My memory after this is very sketchy as I was kept under sedation for the next seven days. In this time I developed pneumonia and my right lung collapsed. My course of IVIG was stopped on Wednesday. With no improvement it was decided to take us across to Wellington Intensive Care on Thursday, where a more equipped unit could take over. Staff told Leanne to expect a long stay in Wellington, anything up to six weeks in ICU for Chris. Apparently the transfer by the Life Flight plane went very smoothly, with me being hooked up to all the “bells and whistles” attached.

Treatments were discussed in Wellington and because of my inability to move physiotherapy had been started from the very first days in Nelson and was to be continued daily. Also plasma exchange was the other treatment that was started on Saturday. It seemed that my body movements started to improve after the first treatment. The following day a tracheotomy tube was fitted. Apparently my movements were returning. My feet and hands were moving and I was trying to communicate using hand and mouth movements. Leanne helped with hand and foot massage for many hours. This was all very positive and my six weeks in ICU turned out to be seven days in Wgtn ICU and a total of four treatments of plasma exchange.

I wasn’t very happy about having the last plasma exchange as it made me feel very hot and nauseous. But I agreed after the doctor’s recommendation. I spent only four more days in Wellington in the neurological ward. In this time I learnt how to stand and walk with the hoist and walking aids, brush my teeth again, and once the tracheotomy was removed, to talk and eat proper food again.

From what I can remember over my sedated stage, the nursing staff were tremendous. They were constantly positive, reassuring, and funny when humour was needed. One thing I will admit is that pain did not feature in a big way. I was always asked if I was in pain because a lot of GBS people suffer this.

I had a very positive partner through my illness. I also feel I owe a lot of gratitude to Damian Johnson’s early detection. This probably had a lot to do with my quick recovery. Also I tried to keep a positive attitude as I wanted nothing more than to get back on my feet! I set myself small goals and was able to return to full time work in new weeks.


Brian Bennett

Brian Bennett is a GBS sufferer, and has some advice on foot problems:

The old foot problem. As you know its now 12 yrs since I had GB and I still have feet problems but by putting your feet in cold and then hot water several times it shocks them and helps reduce the heavy foot problem for a time.

SKINS, not sure if you have heard of these, but they are a tight fitting special garment that can be worn as a knee high (which I have) that help blood circulation and muscle development .and also help keep your legs warm. My legs are like ice so its been a help.

All sports people us them (rugby players in particular) and there is a web site: that will tell you all about them.

They are expensive, my ones cost $74 from Rebel Sport but worth it. Wished I had used these much earlier as it would have been a great help and stopped a bit of the pain…


Peter Scott

Encounter with GBS

Written during his recovery:

During the week of the 17th May 1996 I had a bout of what turned out to be campylobactor pylori (food poisoning). By Monday 20th I had recovered and was feeling great. That night my GP rang to confirm what I had and to tell me to call and get another prescription as what I had been taking would not cure me.

When I woke on Tuesday I had pins and needles in my left arm which I put down to sleeping on it. Later in the morning I bent over to pick a book up off the floor and landed on my face – I didn’t think too much about this, putting it down to being off-balance. For some reason I decided to go and get the prescription instead of waiting till lunchtime. As it wasn’t far I walked, and I remember asking the nurse to get the doctor to ring me as I wasn’t happy about the way my legs were working. She said I had better come back when the doctor was free. On getting back to the office I promptly fell up the door steps. A couple of hours later I saw the doctor who sent me home with instructions to ring him if I got worse or had trouble breathing. By this stage I couldn’t lift the garage door up. On getting my wife to help me up to go to bed, my legs gave way and we both fell to the floor. I managed with the help of a neighbour to get into bed.

On waking the next morning I was paralysed from the waist down and had limited movement in my arms. I was admitted to hospital where the initial diagnosis was GBS. I later found that my GP had contacted A&E to tell them to expect me overnight with what he suspected was GBS. From A&E I was sent to ICU by which time I was completely
paralysed from the neck down. I remained in ICU for 19 days where I had the usual tests, i.e. lumbar puncture, electric currents, to check for the amount of nerve damage etc. I also had 11 plasmapheresis treatments and when my face started to get paralysed I had gamma globulin treatment. Luckily, my face came right in about 4 days. Although my breathing became very laboured I didn’t need to be ventilated but I was very close.

I spent 19 days in ICU fully conscious, 3 days in HDU and 10 days in a general ward before ending up in the rehabilitation unit where I stayed for a little over 4 months. When I first arrived in rehab I was still paralysed from the neck down. Gradually movement started to come back to my trunk, then my shoulders, arms and to the odd finger. By October I could take a few steps in the swimming pool but couldn’t stand on dry land.

Mid November I was discharged and went home to live. This was quite a challenge as I still had very little movement in the majority of my body. I needed a hospital bed, air mattress (where the air is circulated to stop you getting pressure points), an “A” framed hoist (to be lifted in/out of the wheelchair, a battery driven wheelchair, a manual wheelchair, and various other bits and pieces. We had to knock out a wall of the house to create a wet area shower/toilet and also had to build a ramp for access.

The end of January marked a milestone in that I took my first step on dry land, supported by 4 physios and a ‘gutter’ walking frame. Now I can walk 250 meters with no assistance other than a low walking frame. It isn’t quick and I have to watch out for uneven ground and wind, but it is progress. My hands are still a problem. The tip of my right thumb will touch the tip of the index finger with the other fingers on both hands bending about 90 degrees at the first joint, but very little movement at the tip or knuckle. This restricts what I can do, and is very frustrating.

I come in to the rehab unit five days a week and spend 3 hours building up my muscle strength doing such things as using the computer, making items out of wood and physical exercise. Learning to stand/walk again after having done these functions for nearly 60 years has been frustrating and very exhausting. Because I was inactive for so long the amount of muscle wastage has been great and this is taking a long time to rebuild, hence the slow recovery progress.

Because of the severity of my affliction I have been told that it could be 3–5 years before I know what permanent damage has been done. So, it is on with the daily routine of exercise in the hope that I can speed up my recovery


In March 2005 Peter wrote a follow-up to his GBS encounter for us:

The aftermath of Guillain Barré syndrome. 9 years down the track. It is coming up 9 years (in May) since I got ‘struck down’ by what to me, my family and friends was then an unheard of condition called Guillain Barré syndrome. 5 years ago Jenny published my story in the newsletter at which time I was managing to walk slowly with the aid of a walking frame.

So what has happened over the last 4 years? Well, I progressed from the walking frame to a walking stick and then to ‘going solo’ without any support. On a good day and without strong winds and rough ground I can walk for about 2 hours but definitely not as quick as I did before GBS. I have to watch the ground in front of me so walk ‘head down’ most of the time but still fall over from time to time, which shakes me up for a while (forgetting about the grazes and bruises to my knees). However it is far better than being stuck in a wheelchair.

My hands have not made noticeable progress over the last 4 years. Movement is very restricted and there are many things that are outside my scope. Things like using a hammer, or carving meat etc. However teeth do come in handy to assist in some things (doing up my watch strap for example). I can drive (even managed to cope with the Italians, French and the left hand drive car in Europe in 2003) which gives me freedom to go about my work and everyday life without restrictions.

It was surprising at the groups first annual conference (2003) to meet so many who had had GBS, and to find everyone’s story about their experiences leading up to and with GBS were never the same. Some had pain – others didn’t, some took a long time to be diagnosed while others like me had it spotted very quickly. The same with the final outcome, some made a complete recovery whilst others were left with some residual weakness. Probably the only consensus was that fatigue seems to be an on-going symptom. It may not be a factor all the time but it definitely hits you from time to time. It is something you have to learn to live with and know how to manage wit when it strikes.

So after 9 years life continues and I just have to adapt to work around the residual damage that GBS has done to my body. The main thing (no matter how hard) is to stay positive and that there is always someone worse off than you are.