Medical discussions are not my forte. When I hear people talking about their ailments I tend to tune out. Drama-infused television shows based on hospital emergencies leave me cold. I’m a wimp. The internal apparatus of the human body is best left unseen. As long as everything functions, it is also best ignored.
At 73 – going on 74 – years of age, these attitudes of aversion and denial seemed to have served me well. Ostensibly, I was fit and healthy. A non-smoker, eating mostly organic food, enjoying the occasional glass of wine, a regular walker and swimmer – in short, coasting along in the complacency of rude health. Regular visits to my GP usually resulted in him giving me a quick once-over and indicating I should come back only if I got properly crook.
Change, as they say, happens.
Early September 2019. Spring-time in Australia. We intend to make the most of it, packing the car with picnic gear and heading up into the Perth Hills for a bushwalk with our friends.
I had woken with a sharp pain in my left shoulder. No big deal – the shoulder troubled me periodically but the pain usually left after a few days, especially if I behaved myself and kept away from the computer. But, as we followed the trail around Serpentine Falls, the pain grew worse. My backpack didn’t help and I later discarded it before we changed location and walked the circuit near Kalamunda.
My wife drove us home. The previous day I’d been up the ladder and felt a slight tweak while taking down chairs and boxes of books from our garage loft in preparation for the launch of my memoir.
The following morning I rang my GP’s practice but he was unavailable for a week. Nearby, in South Fremantle, I was able to make an appointment with another GP. She noted I had ‘severe left sub-scapular pain’ with occasional pins and needles in the fingers. Lifting my arm above my head afforded some relief. I was sent for an MRI and prescribed painkillers and anti-inflammatories.
Two days later I had an MRI of my cervical spine and brachial plexus. Basically, most aspects of the spinal cord and joints appeared normal. In a few of the vertebrae, disc degeneration was present, and with C6/7 there was some mild bulging and spurring impinging on the C7 nerve. This was presumed to cause the shoulder pain.
On 13 September I saw Dr C, my GP in East Fremantle, and again two weeks later to get another painkiller prescription.
Pain was manageable during the day but intense at night. A hot water bottle and my wife’s massages afforded some relief and I began a regime of Fenac (anti-inflammatory) and Endone (oxycodone hydrochloride – a morphine-like narcotic). Supporting my arm in a borrowed sling helped to some degree.
Over the next week I had two sessions with our osteopath and an acupuncture session.
On 1 October, we left for Brunswick Heads in New South Wales for a visit with my sons and their families. In the two weeks we were there, activities with the grandchildren were restricted. The shoulder wouldn’t allow free movement and for the most part I took an Endone and a Fenac tablet twice a day. Conscious of the strong painkillers , I tried reduced the intake to half a tablet twice a day.
By 10 October, I ‘d stopped the Endone. Pain was less but still an issue. Three days later I caught a head cold which persisted for a few days. Daniele also had the cold but was less affected.
Back in Perth I had another acupuncture session as well as manipulation with the osteopath. Shoulder pain eased and I stopped taking anti-inflammatories.
On Sunday, 3 November both my wife and I woke with stomach aches. We wondered about the small left-over pies from the book launch we had frozen and then defrosted. Her symptoms eased during the day but mine intensified. However, food poisoning seemed unlikely as neither of us had diarrhoea or nausea.
My limbs had been aching for a couple of days and Daniele speculated about a virus. I had poor appetite, skipping my usual coffee at breakfast but made up for it at morning tea (along with a piece of apple pie). That eased the incipient headache but I stuck with miso soup for lunch. By mid-afternoon my head was pretty good, my legs didn’t hurt much, and the stomach was a lot better. The same applied to the shoulder although there were still slight pains in my arms and pins and needles. I also noticed that when I put my hands under cold water, it felt as if I was dipping them into an ice bucket.
The sense of relief was short lived. That night I was in considerable pain – located in the upper right abdomen. Two Panadol and two Codapane (paracetamol and codeine phosphate) afforded slight relief, as did a hot water bottle but I found myself waking up in pain at regular intervals.
Tuesday morning, I checked in with Dr G, a GP in South Fremantle. Blood tests were carried out at her practice. We decided to put an ultrasound and anti-acid tablets on hold.
I began a diet of broth, miso, muesli, and ginger and peppermint tea and had little appetite.
Three days later I saw Dr G again. The blood tests were in. Apart from slightly elevated lipase, nothing unusual and no trace of helicobacter pylori – the bacterial infection that lives in the digestive tract. (The lipase protein level was not considered significant or an indicator of the stomach pain.) We elected to get the ultrasound which took place that day. Meanwhile, I began taking Somac (Pantoprazole - antacid tablets).
By Sunday, 10 November, there was a pattern of largely pain-free days and intensely painful nights. By then I was taking one Somac and one Codapane tablet each day. However, my left arm felt weak, there was tingling in the hands and tap water felt cold. Also, my legs had become wobbly and weak and there was tingling in the tips of my toes.
On Monday, 11 November I saw Dr G. The ultrasound had been clear. There was no obvious problem with any of the organs. She thought the symptoms were stomach-related. An ECG at her practice showed a slightly irregular heart-rate. Dr G wrote a referral to Access Cardiology for an electrocardiogram. A B12/folate test was scheduled. She also referred me for a CT scan of the abdomen and chest. Afterwards, I decided to defer the CT scan and the electrocardiogram, and see what eventuated. I appreciated the GP’s caution but I – perhaps foolishly - remained optimistic whatever was affecting me would pass.
At that stage, the focus was on the abdomen and not much attention given to the wobbly legs and tingling in the extremities of the limbs. On 12 November, I noted it was painful in my thighs when I squatted and in both calves while walking. I had become unsteady on my feet but was able to ride my bicycle as long as I had support when I mounted and dismounted. I continued to go for morning swims but had little energy. The GP had wondered whether my B12 level was low because of the thinning of the stomach lining due to whatever I had caught. Perhaps, we mused, my changed diet might’ve exacerbated that deficiency.
During the night I found I could reduce the pain if I ate a small amount of food. So each time I woke up I took a few mouthfuls of muesli and sipped herbal tea. That, and the hot water bottle, reduced my reliance on painkillers. I continued to take Somac.
Early on Friday, 15 November I saw Dr G. She wrote a referral to a specialist gastroenterologist. The blood tests had revealed no issue with my vitamin B12 and folate levels.
Later that morning I visited my own GP and managed to get a CT scan of the abdomen the same day. He rang me in the evening to say the scan did not show anything serious. There were traces of diverticulosis and a slightly enlarged prostate but nothing out of the ordinary. He advised that if the pain and my symptoms got worse over the weekend I should go to ED. He speculated it could be something ‘weird and wonderful’ - like Guillain-Barre Syndrome (GBS).
By that stage I knew what he was talking about as I had already done some research and GBS seemed a distinct possibility.
On the night of Saturday, 16 November, the stomach pain was intense and I’d become very worried about my numb and wobbly limbs. Early that morning I had a talk with Daniele and at 7.00am she drove me to the Emergency Department of Fiona Stanley Hospital (FSH), twenty minutes from where we live.
Emergency Department – Fiona Stanley Hospital
Other than visit my aunt in nearby St John of God’s Hospital and to attend an ear specialist appointment, I was unacquainted with the vast medical complex that has arisen in recent years between the Kwinana Freeway and Murdoch University. As far as admission went, I could recall a visit to Fremantle Hospital in 1988 to surgically remove an ingrown hair at the base of my spine, and an appendix operation two years before that. Otherwise, I was a hospital neophyte.
After missing a turn, we found our way to the Emergency car park. A short walk took us into the waiting area where about two dozen people were already seated. We took a ticket designed for newcomers and after a short wait were interviewed at the desk. The triage nurse handed us another ticket and we join the group awaiting attention. About twenty minutes later we were ushered through to a way-station, adjacent to the bank of cubicles lined with blue hospital curtains.
Soon I was lying on a bed in one of those cubicles. Daniele sat alongside. Around us, the smells, sights and sounds of ‘ED-in-Action’. An eye-opening world into which most newly-admitted inhabitants are reluctant participants.
Ten hours later I was admitted to a room in Ward 6 – the neurology ward. In the meantime I’d been attended intermittently by nurses and hospital registrars, culminating in an examination by the duty neurologist. He put me through a vigorous program of exercise, flexing my legs and arms and urging me to push as hard as I could against him. Augmenting this physical examination, he tested for reflexes with his rubber hammer, in similar fashion to one of the hospital registrars earlier in the day.
At the conclusion of his examination, Dr H informed me he was going to do a lumbar puncture or spinal tap. I scrawled my signature on a consent form after he outlined the risks. I was given a local anaesthetic at the base of my spine and a long needle was inserted to draw out a sample of spinal fluid. This would be tested to see whether there was an elevated level of protein, an indicator of GBS.
Lying on my side, I experienced very little discomfort and the procedure was short and swift. I asked Dr H to give me a preliminary idea of what might be amiss. He indicated in the order of five possible issues, of which Guillain-Barre Syndrome was the least serious. In the course of the brief conversation, I asked him how long he’d been on duty. ‘26 hours’, he replied. Despite his absolute focus and clear competency, I was glad I did not know that prior to the physical examination and subsequent lumbar procedure.
At that point – around three in the afternoon – Daniele returned home. I remained in ED for a further two hours until a bed became available in the ward. During that time I was able to get out of bed unaided, and to walk the short distance to the toilet. Luckily, we’d packed provisions before leaving home, including a thermos of tea, some slices of home-made bread, and a piece of apple pie. In any case, I was not particularly hungry.
Room 637 Ward 6
When the hospital porter wheeled the gurney into Room 637, I felt blessed. The room was spacious, with a large window looking out to the south. Below, I could see patches of garden dispersed between various buildings. To the left, if I twisted my neck, I could catch a glimpse of the Perth Hills. A side door led to the bathroom. And to my unmitigated surprise, it was a single room. Later, one of the nurses told me 80% of the rooms at Fiona Stanley are for one occupant. After my long day in ED, it felt like a homecoming in a high-class hotel.
Perhaps I should mention private health cover. At reception, I’d been asked whether I wanted to be admitted as a public or private patient. At that time of the morning and in my relatively confused state, any implications did not really sink in. I said ‘private’, as we had private health cover – albeit on one of the lower levels. As it turns out, this made no difference to the room I was allocated or the costs of all services. Everything was free. However, the private health insurance entitled us to a daily $10 voucher to be used at one of the ground floor restaurants, plus a free parking coupon, and – of dubious worth – a free copy of the West Australian each day.
I was not thinking of these privileges as I lay back in my bed on that first evening. Dog-tired after a poor night’s sleep and my time in ED, I was ready to crash. But that was not an option. Treatment was about to begin. It had been explained to me I would receive daily infusions of the blood product, immunoglobulin (IVIG). Hooked up via a cannula inserted in my arm, I would be injected with this extraordinarily expensive fluid for about three hours on each of the following five evenings.
A nurse wheeled in a portable stand containing plastic bags of the precious immunoglobulin. On the opposite side of my bed another stand was positioned, supporting a machine for recording observations or ‘obs’, as the nurses call them. Blood pressure, temperature and heart rate needed to be regularly monitored during the infusions.
By now it was early evening. Daniele had returned, with broth and other goodies. I remained cautious about food but realised I hadn’t had any stomach pain during the day. In fact, the stomach pain disappeared and hasn’t been an issue since.
Hours went by. The infusion procedure was delayed. I was told a consent form had not been co-signed by a doctor. The upshot was that by the time I began my three-hour procedure it was around 12.30am. This in itself was unusual. These infusions preferably take place in the daytime when more nursing staff are available. Every half an hour, after a beeper sounded, two nurses – one of them a senior – arrived to connect a new bag of the immunoglobulin. One of them also conducted a round of observations but I noted they were both standing together to check that I received the right amount of the blood product. My consent form stated there were small risks of side effects including allergic reactions. I was also cautioned the cannula inserted into my vein could cause an infection. Happily, nothing adverse occurred during the five days of infusions.
On that first night I was absolutely exhausted, finally drifting off to sleep at around four in the morning and waking at six. But there was plenty to cheer about. My night nurse – an African-Australian – entertained me with a tale of her journey as a 12-year old from Uganda to Kenya where she became a refugee, before Australia accepted her three years later. How my circumstances paled before her hardships! And I had already begun to note the efficient teamwork on the ward, where busy nurses exuded efficiency while simultaneously appearing relaxed and at times light-hearted. A good workplace, I surmised.
By the time my breakfast arrived, I’d successfully negotiated a shower (sitting on a plastic chair), employed my stuttering fingers to operate both my razor and toothbrush, and dressed myself. Daniele brought in bread and muesli, and I suddenly found myself with appetite. Hospital baked beans with tomato sauce are far from our usual fare but went down a treat.
Unlike many GBS sufferers, I was never unable to walk. That first morning, when the physio visited and put me through my paces, he assessed I was fit enough to proceed solo on twenty-metre strolls in the immediate corridor but barred me from meandering further without assistance.
Diagnosis of my condition remained uncertain. When Dr J visited on her morning round, she put me through the physical tests I had endured in ED (albeit with not the same degree of force). She surmised I might have a milder version of GBS called Miller–Fisher. As soon as it could be arranged, I would have an MRI as the spinal tap had not shown elevated protein levels. Later in the week, they might also carry out a nerve conduction study.
Daniele came and stayed four hours. I was impressed when she secured a wheelchair and took me downstairs where we explored the hospital grounds and rested at the Jamaica Blue Café. Enviously, I watched and inhaled while others consume aromatic lattes. But, showing unexpected good sense, I decided not to rock the boat. Stomach pain was too fresh in my memory.
By the time the second evening rolled around, I was feeling something of a veteran. I also observed I was perhaps the fittest on the ward. Most occupants seemed to be stroke victims and more or less immobilised. At least I could periodically wander the corridor and joust with the nurses. And I had managed to operate the multifaceted screen suspended by a retractable metallic arm. Both TV and radio were available, as was the daily menu. As long as I ordered in time, I could choose from a wide range of food and beverages. A far cry from the old days of hospital mush. My evening meal – fish with herbs and garlic accompanied by steam rice, beans and broccoli – proved to be an inspired choice, as did the feta and spinach omelette for breakfast the next morning.
Again, due to the lateness of the infusion, the night passed with a modicum of sleep. When the tubes were removed around 1.30am, I was still bright eyed and bushy-tailed. From the books by my bed I picked up Elliot Perlman’s recent release, Maybe The Horse Will Talk. Nearly two hours later I’d read half the novel, imbibing the story by one of our favourite writers. Things were looking up. I’d been told that on each succeeding evening the infusion would begin two hours earlier – a 22-hour interval being deemed adequate. This meant (potentially) two hours more sleep, and by the time I completed my final infusion on the Thursday evening, it was only around 7.00pm.
Meanwhile, I received emails and phone calls from friends, keen to hear about how I was travelling. And Daniele continued the supply of miso broth, kimchi (for probiotic value), and vegetable juice. Each day, she escorted me along the corridors, where I generally kept one hand on the railing, and then I would board the wheelchair and she would take me in the lift downstairs and into the grounds. I did not mind the air-conditioning and Fiona Stanley smelt less like a typical hospital than I imagined but I was always happy for the fresh air.
Tuesday passed. The MRI was delayed until the following morning. When the results came through before lunch, our anxieties eased. The roving neurologist said the spinal cord appeared normal but there was some inflammation of the nerves in the lower back – the lumbosacral plexus, to be technical. We gathered that was where the peripheral nerve system exited from the central nervous system. This was good news in that it seemed to rule out more serious conditions and more or less confirmed the GBS diagnosis.
It was probably good news for the hospital. One of the nurses had told us of the congestion downstairs in the ED and of the ambulances having to ramp. Beds were at a premium. And yet the nursing staff continued to work with calm and focus, as did the other medical representatives. Over the week I was seen by three different female neurologists, all of whom were attentive to my questions and anticipated what I might need to know.
There was little interaction with other patients. Most were inert in their beds. Visitors came and went, often unsmiling and clearly worried. My next-door neighbour was sufficiently mobile to wander about. ‘Hello, I’m Bruce,’ I introduced myself as he stood my doorway. ‘What’s your name?’ He looked puzzled, mumbled something and shuffled away. Not for the first time I considered myself fortunate.
I could write a book about the nurses. In my short stay, I counted at least a dozen possible countries of origin. Most looked to be in their twenties or thirties. Others were older, including a couple of Aussies who had been in the system for some time. One had a rough exterior but a golden heart. She urged me to question the doctors and make sure I got the answers I needed. In truth, I didn’t need much encouragement. I’m not noted for being shy in coming forward – but in any case the doctors who did the rounds, as I’ve mentioned, were ever helpful and did not maintain any need to appear as knowledgeable ‘experts’.
By Thursday morning – my fifth day – I had worked through the menu, relishing asparagus soup and lentil pie, lemon chicken (twice), together with repeats of the feta and spinach omelette and the fish, herb and garlic, not to mention an array of deserts including pannacotta, lemon cheesecake, and apple crumble. Feeling more confident in the belly, I tried the ice cream but it paled beside the other sweets. Usually I stuck to white or herbal tea, especially after I tested the coffee and found it undrinkable.
My reintroduction to the joys of caffeine came that final morning when my four regular walking mates visited. One wheeled me downstairs to Jamaica Blue where I embraced my first Long Mac in what seemed an eternity.
A telephone call interrupted us. The physio was waiting. I was whisked upstairs to be re-examined. ‘We need to test you on the stairs,’ said S, well aware our townhouse had two stories and it was not an option for me to reside at the bottom. In the stairwell, he hovered behind me as I held the rail with one hand and a crutch in the other. Following his instructions, we went up and down a couple of times.
I must’ve received a tick of approval. Later in the day, a senior nurse approached me somewhat bashfully. ‘We would like to make room for a stroke victim,’ she said. ‘You have your final infusion this afternoon. Would you be okay with going to a shared room for that to happen – and later you can be checked out.’
No argument from me, as I had anticipated a few more days and was pleased at the prospect of an early discharge.
The twin room was a far cry from my palace. A curtain separated me from another patient. But by 8.30 that evening the infusion was over, I’d received my discharge papers, and was taken in the wheelchair to the waiting area outside the main entrance. Daniele collected her car from the car park and then collected me. We were homeward bound, both awash with relief.
Recuperation – the first two months.
With my hospital crutch in one hand and the other gripped to the railings, I eased my way up the stairs. Daniele hovered behind me, lest I stumble. Hospital had been fine – an altogether better experience than people often paint – but I was glad to be home. As a so-called ‘retired’ person, there were no work obligations. Our bedroom, offices, and bathroom were on the upper floor. I could limit my use of the stairs, coming down for meals and exercise.
My discharge papers confirmed I would attend the hospital as an outpatient for a nerve conduction study. This would be followed by an appointment with the neurologist within six to eight weeks. Adding a personal touch, I was wished the best of luck with my recovery and urged to return to ED if my symptoms became worse.
Exercise began with short, ten-minute walks. After two days I felt confident enough, using the crutch, to negotiate the sand and to swim at South Beach, our regular habitat for eight months of the year. Supported in the water, the body felt at home. Saltwater therapy had helped with the shoulder and I felt sure it would assist muscular recovery following GBS. After consulting with a physiotherapist friend, I began to practice specific arm and leg exercises in the water – a version of hydrotherapy.
Within a week of leaving hospital I was walking for twenty minutes at a time. Although I was quite numb in the feet when I woke up each morning, my legs felt stronger – but unequally so. The right leg lacked power and my left arm was considerably weaker than my right. Being predominantly left-handed, I found tasks like using a screwdriver, cutting bread, and trying to write legibly presented considerable difficulty.
Regarding the rest of the body, I still noticed some slight residual stomach pain and a sense there was a belt or band around my upper abdomen. But overall I felt a huge improvement.
On 28 November I went to see a naturopath, some five years after a previous visit. His tests relating to the health of organs and the presence of viruses showed a reduced number of adverse readings. But he noted the presence of Ross River virus which had not showed up during the previous test. I came away with assorted homeopathic pills and liquids aimed at eliminating toxins. (Homeopathy has been part of my life since I lived in the countryside from 1990 to 2005. Hay fever in spring and early summer greatly affected me. A local homeopath carried out tests and prescribed a range of pills. After two years, my symptoms had all but vanished and have never returned. When I encounter critics of homeopathic medicine, I raise this experience as there was nothing else obvious that might have been responsible for this relief from hay fever.)
On 3 December I attended Fiona Stanley for the nerve conduction study (NCS), carried out by Dr K, assisted by Dr H. From what I’d read and been told, this test involved the electrical activation of nerves by pressing a metallic pulse against various points on the skin, and measuring the responses obtained. The readings would indicate how well the nerve was functioning. For the patient, there would be some discomfort but no after-effects.
Some discomfort? I found this to be a grand understatement. Each time the device pressed against my skin, I felt a shock akin to touching an electric fence. To be clear, it was painful – not just ‘uncomfortable’, a euphemism designed to reassure those who undergo the test but, in my experience, not at all accurate.
For about twenty minutes, Dr K took readings from my feet, legs and arms, while he and Dr H watched them graphed upon a screen. He then inserted needles to obtain a reading of the electrical activity within the muscles – a procedure known as electromyography or EMG.
I was unable to get much information about what the tests revealed, other than they provided a baseline against which future recovery (or deterioration) could be measured. When I asked Dr K whether he thought I had the Miller–Fisher version of GBS he was strongly of the view this was not the case. Asked to rate the severity of my condition, he described it as ‘mild’.
One week later I attended Fremantle Hospital as an outpatient for a physiotherapy session. D, the young physiotherapist, worked with neurological patients and had an outline of my situation, including the findings of the physiotherapist who had examined me twice in Fiona Stanley. She put me through a range of exercises involving physical and balance tests. These showed an improvement on those carried out in the hospital a fortnight beforehand. I was given a rubber strap and a series of exercises to strengthen legs and hips.
A day after seeing the physio, I had a setback. The author of my own misfortune, I was on my regular Thursday ramble with my mates and attempted to walk down a sand embankment to the beach. My walking stick gave way and I rolled on my ankle. From the resounding ‘crack’, we were sure I’d done some serious damage. I walked gingerly into the water and soon after made my way back to the change room, before being driven to our regular café. Later, I began a regime of rest, ice and elevation, and made an appointment to see Dr G the following morning. After examining me, she concluded it was a soft tissue injury, not a break.
Dr G also drew my attention to the earlier CT scan. She did not think the diverticulosis was responsible for my stomach pain as the pain was on my right side and diverticulosis usually occurs on the left. She thought it was worthwhile to get a specialist opinion, and also have my GP monitor the enlarged prostate as PSA tests are not always conclusive.
Upon my return to the physio, I confessed I’d done my ankle and not been capable of the leg exercises. She suggested I concentrate on the arms until the ankle recovered.
By late December, swelling in the ankle had subsided slightly but was still tender. I also experienced significant tingling in the feet, arms and hands. My legs remained wobbly and I couldn’t detect there any recent improvement.
As at 4 January 2020, two months had elapsed since my initial symptoms. I was undertaking short walks, restorative yoga at home, and sporadic exercises for my arms. The ankle was slightly swollen but much improved, while the GBS symptoms remained unchanged. I grew easily fatigued – and was unimpressed when pain returned to my left shoulder.
On 7 January, I had a massage with a Chinese medicine and acupuncture practitioner. She speculated my blood might need boosting, and more red meat and red vegetables, as well as Floradix could be given a try. (Floradix is a natural liquid iron supplement that reputedly allows for high absorption of iron.) I’ve since followed that suggestion, taking two teaspoons of Floradix morning and evening before my meal.
Guillain-Barre Syndrome – My Research
As you do, I initially scoured the Web. From Harvard Health Publishing (Harvard Medical School) I found the basic information:
‘Guillain-Barre Syndrome is an uncommon disorder that causes damage to the peripheral nerves. These nerves send messages from the brain to the muscles, instructing the muscles to move. They also carry sensations such as pain from the body to the brain. The nerve damage often causes muscle weakness, often to the point of paralysis, and can cause problems with sensation, including pain, tingling, crawling skin or a certain amount of numbness.’
The article goes on to state GBS ‘is an autoimmune disorder in which the body’s immune system attacks and destroys the myelin sheath, which wraps around long nerve cell bodies much like insulation around a water pipe. Myelin protects the nerve and helps to speed the transmission of electrical impulses down the nerve. If myelin is destroyed, nerve impulses travel very slowly and can become disrupted. If muscles don’t get proper stimulation through the nerves, they will not function properly.’
Why does it happen? Causes of the syndrome remain unknown but ‘many experts think the immune system is trying to fight an infectious organism (bacteria or virus) and accidentally injures nerve tissue in the process.’
I learnt from that initial article that, in more than two thirds of patients, GBS occurs one to two weeks after a viral disease, including the common cold, flu, or infection. Occasionally, it followed immunisation, surgery or bone marrow transplants.
The incidence and severity of GBS varies widely. I have read estimates it affects between one and four persons per 100,000 of population per year. In Fiona Stanley, Dr K told me there were around 90 cases annually in Western Australia and Fiona Stanley Hospital dealt with about one third of them.
I was lucky. Symptoms were confined to my legs and arms. They did not occur in the upper body or affect the respiratory system. According to the US National Institute of Neurological Disorders and Stroke, GBS ‘can be a devastating disorder because of its sudden and rapid, unexpected onset of weakness – and usually actual paralysis. Fortunately, 70% of people with GBS eventually experience full recovery.’
According to the Harvard article, death occurs in 3-5% of cases – usually those with severe respiratory issues, where patients ‘develop paralysis of the chest muscles before they have reached the hospital’.
Yes, I seem to have been lucky but at the time of writing – two months after leaving hospital – the recovery process has plateaued out. There is a question mark about how long it will take and whether I will be left with any residual symptoms.
Early on, someone mentioned that the musician, Lucky Oceans, who is well-known in Fremantle, had contracted GBS in 2008 while visiting his mother in Philadelphia. Oceans, the host of an ABC music program, The Planet, posted his story on the ABC website. Subsequently, he was interviewed by Dr Norman Swan for the ABC Health Report. Links are given below.
I found both the personal story and the interview extremely interesting and helpful. It’s one thing to be given information from medical sources; it’s another to hear about a condition from a fellow-sufferer. Initially, Oceans’ main concern was that his livelihood was at stake. He could not play his guitar. But as far as I can tell he has made a complete recovery (although the time-frame is unclear).
Likewise, there are a range of personal accounts given on the New South Wales website mentioned below. These stories give something of the spectrum of experience for those who have contracted the condition. Sometimes there might be similarities; on other occasions the experiences differ in content and severity.
I also came across the GBS Foundation of Australia whose mission is to ‘advance health by supporting and improving the quality of life of patients and families, and to be recognised as the Australian resource for GBS and related illnesses of the peripheral nerves. Increase public awareness by educating both the professional and lay communities and raise funds for the research & treatment of Guillain-Barre Syndrome until a cure is found’.
The Foundation has produced a range of information booklets that provide practical advice in easily accessible language.
I also unearthed a very informative book published in 2007 by the American Academy of Neurology. Authored by Gareth Parry and Joel Steinberg – both neurologists – this excellent work not only goes into great detail about GBS or acute inflammatory demyelinating polyneuropathy (AIDP) as well as chronic inflammatory demyelinating polyneuropathy (CIDP) but it contains helpful diagrams and reference material. Furthermore, one of the authors had contracted GBS and was able to bring his personal experience into the equation. I will draw material from the book under the heading below ‘Questions Remaining’.
Thankfully, modern medicine has begun to embrace the reality that physical improvement can be helped or impeded by the attitudes of patients and their ability to deal with the mental and emotional stress of whatever condition affects them. Holistic practitioners within and outside the mainstream have recognised this for a very long time. For them, it’s a no-brainer. All components of body – mind – spirit need to be embraced if recovery is to be accelerated.
Broadly, this was my intellectual understanding well before I contracted GBS. But I had never had to deal with the reality of something life-threatening and potentially permanently debilitating. In the days and weeks after the onset of symptoms, my intellectual appreciation was put to the test. Could I deal with the actual experience with acceptance and equanimity? Would I deny or dismiss any fear that arose? Would I fall back on my prior aversion to medical detail and avoid trying to understand, let alone come to terms with, what was happening to my body?
On some level, I knew this was where the rubber hits the road.
One of the initial tests – a challenge that preceded the GBS – came with the pain associated with my shoulder and my stomach. It was new to me, constant pain. Very soon, I gained some appreciation of what those who suffer from a chronically painful condition must experience. The pain absorbs you; it detracts from your ability to think straight or to settle into any activity. You want to curl up and hide or you become abrasive and lash out in frustration. As I dealt with these issues, I wondered whether I could live with chronic pain for an extended period. I doubted I could do so gracefully and gratefully. Any spiritual concepts around ‘acceptance’ looked pretty hollow. I could see myself failing badly and wallowing in self-pity.
Thankfully, these painful conditions abated. But then I was left with symptoms that at first were unexplained. Neither the numbness nor tingling nor the loss of mobility was particularly painful. But while they were unexplained, anxiety hovered. Somehow there was a sense of ‘this may be serious’ but some kind of hope hung about that the symptoms would abate by themselves. When this did not occur and various tests were inconclusive, uncertainty reigned. This was the most difficult period. Just prior to my hospitalisation, I awoke one night and had what my wife described as ‘a panic attack’. This was completely out of character but I was a gibbering mess and felt completely lost and helpless. Having her support helped immeasurably. In fact, I could talk at length about her role as a carer but may come back to that a little later.
Ironically, once we had made the joint decision to check into hospital and place ourselves within the medical system, much of my anxiety drained away. Not so for Daniele. Until the actual diagnosis was made, she remained in an underlying state of worry but concealed it effectively from me. Meanwhile, I was too busy immersed in moment-to-moment life as a patient, increasingly appreciative of the level of care and the degree of expertise to which I had surrendered.
Since leaving Fiona Stanley I’ve had my mood swings. For the most part I’ve been okay with progress – and even okay with no observable or felt progress. But frustration can arise, along with a tendency to get ahead of myself, ruminating whether I will get to be ‘normal’ again. I catch myself doing this and usually manage to smile. The mantra, ‘Be Here Now’, never appears more relevant.
Most stories I have read involved much more serious cases of GBS. This puts my situation in perspective and increases my sense of gratitude that, while I have been dealt some potentially serious cards, others have copped far worse deals. On the other hand, it’s difficult to get a handle upon week-to-week recovery – whether, upon leaving hospital, you progress, remain static, or regress. Most stories don’t go into fine detail about the stage-by-stage evolution, or attempt to qualify and quantify any changes. And ‘mild cases’ are rarely reported in detail.
A couple of items in Lucky Oceans’ narrative caught my attention. Firstly, he described being left-handed and how that side was affected more than the other. He was told this is often the case with GBS. With me, it’s six of one and half a dozen of another. I’m predominantly left-sided (I kick with my left foot, played tennis with my left hand, write left-handed and hold tools in the left-hand – but I throw right-handed). From the time in September when my shoulder issue arose, I felt some weakness in the left arm which was exacerbated when the more definitive GBS symptoms arose. The arm has remained much weaker than the right. But it is opposite with my legs – the right is considerably weaker and lacks ‘oomph’.
Lucky Oceans was also asked about the cost of treatment. ‘$240,000,’ he answered, ‘and of that amount $160,000 was for the immunoglobulin!’ Bear in mind we are talking about US dollars. Lucky was lucky, at least in the monetary sense. His American Express card contained insurance that covered the whole of this expenditure. And his experience also highlights how comparatively lucky we are in Australia with our public health system. Notwithstanding Obamacare, illness in the United States can be financially disastrous.
- Causation: How did I win the lottery and contract GBS? It remains a mystery. The heavy cold in mid-October may have contributed. Perhaps there was an undetected virus in the stomach (bearing in mind it’s still unclear what precipitated the pain in my upper right abdomen). Did the shoulder issue have anything to do with it? It’s hard to join the dots.
- Symptoms: My initial symptoms – numbness in the feet and pins and needles in arms, legs and hands, together with unsteadiness when walking – are consistent with rapid onset GBS. I did not experience pain from muscle cramping between the shoulder blades or in the lower back or thighs that Parry and Steinberg say is present in 30% of GBS patients. Yet I did have an antecedent issue with my left shoulder and I did experience pain in my calves when walking. I still wonder whether there is any connection between the shoulder complaint - which we have assumed from the MRI to be a nerve issue stemming from the C6/7 bulging in the neck.
- Diagnosis: Is it 100% clear I have GBS and, if so, is there a specific form? Again, clinical findings and the range of tests seem to leave room to move. On my discharge summary the ‘principal diagnosis’ is given as acute inflammatory demyelinating polyneuropathy – and under ‘comments’ it states: ‘? Early Miller Fisher variant of GBS’. Further in the report it states the MRI of my spine is consistent with AIDP. Yet, when I had the nerve conduction study, the attending neurologist dismissed the idea of Miller Fisher. And my reading suggests the condition known as chronic inflammatory demyelinating polyneuropathy (CIDP) could constitute a revised diagnosis if a relapse occurs over time. I raised this on 16 January when I returned to Fiona Stanley as an outpatient. Dr Y, the neurologist, examined me and later went from the room to consult with Dr J. Her view, as related to me by Dr Y, was that I did not have the Miller Fisher variant and neither was it likely my condition would be chronic. Usually, a relapse within the first four weeks after initial treatment would be an indicator of CIDP and in my case that had not occurred.
- Recovery: What factors are important? Parry and Steinberg say ‘recovery of strength typically begins 2 to 4 weeks after maximum weakness is reached. It may begin without an obvious plateau of weakness in mild cases. The patient may remain quite weak for several months in severe cases. Severity of weakness and the rate and degree of recovery vary enormously…… In mild cases, complete recovery may occur over a few weeks, while in other cases it can take years.’ When I read that, I queried Dr K’s classification of my condition as ‘mild’. I am unsure where my recovery is at. Though I have noted a ‘huge improvement’ in the fortnight following my exit from hospital, the symptoms I currently experience are numerous:
- Lack of mobility – a big issue for one who loves to walk. I still use a stick on longer walks, mainly for a sense of security. But my legs – the right one in particular – are weak and wobbly;
- Lack of energy – not much change in fatigue levels over the past couple of months;
- Lack of balance – not a big issue but I need to be careful walking down the stairs or on uneven ground. And to put on a pair of pants I need to sit down – I can’t balance sufficiently on one leg.
- Numbness prevalent in feet and toes – the left foot more than the right. When I wake up this feeling is much more obvious – something of a ‘clubfoot’ which seems to abate to some extent when I start moving about. As things stand, I am not up to driving a car;
- Tingling in the legs, arms and fingers – moving my arms into certain positions exacerbates this – and brushing fingers or toes against something feels as if I have sand paper on my skin surface;
- Weakness and soreness in the left arm, particularly the muscles in the upper arm;
- Pain in the thighs and hamstrings when I attempt to squat or bend down low.
None of these factors prevent me from leading a reasonably normal life but I remain constantly aware of the physical sensations and the reality of being restricted in what I can do.
At my outpatient visit, I asked Dr Y about whether ‘mild’ was a correct description. She indicated it was accurate because my symptoms were much less serious compared with those on the opposite end of the spectrum. By implication, it did not mean I would normally have recovered my strength within the first few weeks.
- Nerve function: How does repair occur? There seem to be two aspects – the myelin sheath and the axon. The latter is an electrical cable or nerve fibre that transmits messages from the brain to the muscles in the form of electrical impulses. The cable is protected by the myelin sheath, which is not continuous but consist of multiple segments of myelin, each separated by a tiny gap. A ‘short-circuit’ occurs when the myelin sheath is stripped away from the underlying axon. The message fails to reach the muscle, causing weakness. In recovery, the myelin regenerates – at first thinly and then becoming thicker over time and more effective as an insulator. If damage has occurred to the axons, repair can take much longer. How much longer is a question mark?
I posed this distinction to Dr Y. She said the nerve conduction study was designed to address the issue. But she did not distinguish between repairs to the myelin sheath and the axons. Neither had she seen the nerve conduction study which she told me remained unavailable and might not be ready for a couple of weeks. I needed to enquire from the outpatients’ reception to obtain a copy. At that point I asked her if I would have another nerve conduction study at a later date because Dr K had indicated the first one was simply a baseline and progress (or otherwise) could only be measured by a subsequent study. Dr Y took this up with Dr J and reported that it was not felt necessary for me to return to the hospital unless deterioration occurred.
- Rehabilitation: When to push and not to push? The consensus seems to be that while it is important to rebuild and retrain muscles, GBS patients typically fatigue easily and it’s counter-productive to exercise once fatigue sets in. Certainly, this has been the advice of my physiotherapist and reinforced by the neurologists. But it’s a delicate dance. Perhaps I have erred on the side of caution and yet at the same time, I managed to wreck my ankle when I became inattentive and overconfident. I suspect each person will find an exercise regime that fits their particular situation. My daily routine, apart from the early morning swim, is somewhat erratic but in the first two months after release from hospital, I have built up my walking from ten minutes to half an hour while maintaining short sessions of undemanding yoga.
- Other issues – the heart: I had an ECG both with Dr G and again in Fiona Stanley. On both occasions there was slight irregularity. Parry and Steinberg mention that with ‘patients with GBS, the heart may beat too slowly, too rapidly, or it may beat irregularly.…… This is not, in itself, dangerous, but it is an indication of autonomic nerve involvement that may precede a more dangerous abnormality of cardiac rate or rhythm.’…… And further on: ‘rates that remain consistently above 130/140 beats/minute can be dangerous.’ I note no mention of my heart appears in my discharge records. At the outpatient appointment on 16 January, Dr Y indicated it was not unusual to have irregularity in the course of treatment and there was nothing I need to be concerned about.
- Diet: Are there foods or beverages to be avoided? This was not covered in my time in hospital and neither have I found mention in the literature. I have read or heard that people with a good immune system can actually be candidates for conditions like GPS. It seems counterintuitive but can be explained along the lines of the efficient immune system trying to correct something swiftly – and then taking a wrong turn. A less efficient system may not react so promptly or in that same manner. Away from hospital I have had all manner of advice on diet. One friend, whose husband was belatedly diagnosed with lupus, has found the Wahls Protocol to be of immense benefit. This comprises a large intake of vegetable and fruit juices, as well as good meat products. It eschews grains and dairy, much like the popular Paleo diet. I have not gone down that route and while I am open to taking products like Floradix to help with iron levels in the blood, and magnesium tablets to correct an imbalance found by the naturopath, I have not been convinced to move away from a regular, healthy food intake.
- Other modalities: What might speed recovery? A friend who teaches Qi Gong swears by this practice which, apart from the physical movements, also involves using the mind to send positive signals to affected areas of the body. It’s not my thing but it could work for others. My wife’s yoga teacher reckons his practice can assist in ‘firing up the nerves’. It sounds like a good idea, if only I knew what it meant. The same applies to Pilates. Prior to my shoulder issue, we went to Reformer Pilates once a week and I found it both enjoyable and beneficial. I’m contemplating a return, perhaps with a modified regime. Certainly, my physiotherapist is in favour. But the ankle has held me back for the moment.
- GBS research: How can I be of use, if at all? This long account of my experience to date could form the basis of a case study. I’ve not come across any GBS support groups in Western Australia and neither am I aware of any current research project. This is an area I would like to explore. When I raised this with Dr Y, and she consulted with Dr J, I was told that GBS was adequately researched and my proposed case study was not required. I must say this surprised me, and I intend to look into it further. If there have been around 90 cases of GBS in Western Australia every year, then that amounts to 1800 over the past two decades alone. One would think that represents a significant enough figure to warrant interest from the medical schools of our universities, not to mention our hospitals.
The Carer’s Role
Along with my aversion to medical matters, I’ve always imagined I would be a bloody awful carer. Daniele and I are used to living independent lives but also doing many things together. With the onset of GBS, I became extremely dependent upon her. I couldn’t – and still can’t – drive our manual car with any confidence. She has done all the ferrying to and from medical appointments, hospital and social outings. We have avoided going out of town and evening outings. In the immediate aftermath of hospital, she was at my side as I mounted and dismounted the stairs, walked in the neighbourhood, and wobbled over the soft sand to the beach. Thankfully I can now manage these meanders without assistance, save for my Dad’s walking stick which I use for longer strolls.
My wife has also had to assume most of the household tasks, particularly those that involve much bending down. She has experienced her own challenges – Ross River virus being one – but manages much better than one dare to hope. Nonetheless, I have had to urge her to take care of herself. Neither of us is always on the money when it comes to self-care, despite our affirmation of the need.
Having a partner in these circumstances makes an immense difference. Apart from practical matters, we can talk and share concerns and ideas. I don’t know how I would have managed by myself. People do – single people. Hopefully they have friends and relatives to call upon but this is not always the case. I can now see that support around severe medical circumstances is never guaranteed, and I’m doubly appreciative for the way in which Daniele has embraced this role.
It’s been helpful, too, to have input from family and friends. Strangely enough, everyone I know seems to know somebody or have heard of somebody with an auto-immune issue. I get the feeling it is one of the big medical sleepers, public awareness buried beneath the publicity for cancer and heart disease. However, it is unsurprising our immune systems are under constant threat. Modern industrial life – with pollution, processed food, plastic-infested water, and the ubiquitous ‘stress’ - presumably play some part, along with genetic predisposition in certain cases. At least, from what I’ve seen of the medical profession, they are largely upfront about how much remains unknown.
When anyone is stricken with illness, there are both personal and public implications. In something of a forensic manner, I have tried to outline the events and opinions as they have unfolded, and at the same time express how it has affected me. But my eye has also been on the bigger picture. Hospital systems worldwide are under extreme pressure, as are the governments that fund them. To my untrained eye, bearing in mind I spent a mere five days in Fiona Stanley Hospital, I thought those at the coalface who form part of the system are performing exceptionally well. However, I appreciate there are inevitably background pressures that would not be always obvious to a patient.
Returning as an outpatient, my experience was somewhat different. It appeared I was regarded more as a former patient, to whom a fixed amount of time could be allotted, than a person in the process of rehabilitation, and with questions relevant to that aspect of the journey. As I mentioned, it surprised me the hospital would not want to monitor progress of a GBS person–in–recovery but perhaps that simply reflects their sheer caseload and inability to bite off more than they can chew.
If I reflect on what might have done differently, the most obvious aspect relates to the initial symptoms of numbness and tingling. Distracted by the stomach pain, neither I, nor the two general practitioners who examined me, was able to pick up on the potential seriousness. Otherwise, I might have got to hospital a little earlier. Whether that would have made a great difference is a moot point.
In toppling from my complacent pedestal, I’ve had the opportunity to contemplate what it is like to live with diagnostic uncertainty. In seeing my body plummet from outrageously good health to something far more precarious has been a major wake-up call. I hope I can respond wisely, no matter what unfolds in the future.