an autodidact meets a dilettante…

‘Rise above yourself and grasp the world’ Archimedes – attribution

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reading matters 11 – encephalitis lethargica. Will it return?

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Asleep, by Molly C Crosby, 2010

Canto: This was one of the saddest books I’ve read in a long time. It’s about a disease that arose, and was recognised, at around the time of the ‘Spanish flu’ of 1918, though it was more sporadic and long-lasting, and rather more mysterious. It’s also a kind of cautionary tale for those among us who downplay the impact of diseases and their effects, which are so often long-term and horrifically devastating. It’s humbling to realise that we just don’t know all the answers to the pathogens that strike us down. 

Jacinta: And could revisit us, in mutated and perhaps even more deadly form, some time in the future. This book is about encephalitis lethargica, a disease that was personal to the author, as it infected her grandmother, whose entire life, though she lived to a goodly age, was clearly stunted by it. She was struck down at the age of 16, and slept for 180 days, and though she lived almost 70 years afterwards, she was robbed by this brain-blasting illness of the life of the mind, the rising above ourselves and grasping of the world that we’re attempting in this blog. Through sheer bad luck. 

Canto: And as Crosby points out, her grandmother was far from being the worst-affected victim of this disease. People died of course, but others were disastrously transformed.

 Jacinta: So let’s go to a modern website, a department of the USA’s NIH, the National Institute of Neurological Disorders and Stroke, for a definition:

Encephalitis lethargica is a disease characterized by high fever, headache, double vision, delayed physical and mental response, and lethargy. In acute cases, patients may enter coma. Patients may also experience abnormal eye movements, upper body weakness, muscular pains, tremors, neck rigidity, and behavioral changes including psychosis. The cause of encephalitis lethargica is unknown. Between 1917 to 1928, an epidemic of encephalitis lethargica spread throughout the world, but no recurrence of the epidemic has since been reported. Postencephalitic Parkinson’s disease may develop after a bout of encephalitis-sometimes as long as a year after the illness.

Canto: Yes, and having read Crosby’s book and knowing about the worst symptoms and a few heart-rending cases, the sentence that most strikes me here is, ‘The cause.. is unknown’. Apparently Oliver Sacks’ book Awakenings, which we haven’t read, is all about patients who have ‘awakened’, permanently damaged, from this bizarre disease, and that’s a book we now must read, though of course it will provide us with no solutions.   

Jacinta: And no arms against its future devastation, should it return – and why wouldn’t it? Crosby and others have suggested that ‘fairy stories’ like Sleeping Beauty and Rip van Winkle may have been inspired by outbreaks of the disease. Of course this is conjecture, and only if the disease returns will we be able to attack it with the technology we’ve developed in the intervening century. As the neurologist Robert Sapolsky points out in his mammoth book Behave, (so mammoth that I can’t find the quote), the number of papers published on the brain, its activity and functions, in the 21st century, has grown exponentially. We might just be ready to counteract the long term horrors of encephalitis lethargica next time round, if it comes around. 

Canto: Crosby’s book is organised into case histories, featuring people who fell into this bizarre torpid state for long periods, and when aroused, often behaved in anti-social and self-destructive ways that in no way resembled depression, between bouts of a ‘normality’ that was never quite normal. And one of the saddest features of these case histories, richly described in the notes of famous figures in early neuropsychology, such as Constantin von Economo, Smith Ely Jellife and Frederick Tilney, is that the victims disappeared into the void  once it became clear that no known treatment could save them.

Jacinta: Yes, some may have died soon afterward, others may have lived on in a limbo, locked-in state for decades. In fact the symptoms of this disease were bewilderingly varied -various tics, hiccupping, catatonia, salivation, schizoid episodes… Encephalitis literally means swelling of the brain, and it doesn’t take a medical degree to realise this could cause a variety of effects depending on which area of the most complex organism known to humanity is most affected. 

Canto: Encephalitis is usually caused by viruses, and of course viruses hadn’t been fully conceptualised when von Economo wrote his 1917 paper on what was to become known as encephalitis lethargica, as the role of DNA and RNA was unknown. However, von Economo was the first to recognise the vital role of a tiny, almond-shaped section near the base of the brain, the hypothalamus, in the distorted sleep patterns of these patients. He also wondered if there was a connection between the so-called Spanish flu and this sleeping sickness.

Jacinta: Yes, and this brings to mind the current nightmare pandemic. People, including of course epidemiologists, are wondering about the long-term effects of this virus, especially in those who seem to have recovered from a serious infection. Crosby writes of the situation a hundred years ago:

The war had provided the first opportunity encephalitis lethargica had to crawl across the world with little notice from the medical community. And by 1918, the pandemic flu had given it the second opportunity, stealing worldwide attention, infecting and killing millions. Epidemic encephalitis moved with the flu, almost like a parasite to a host, often attacking many of the same victims, receiving very little notice at all. 

Of course there has been no sign of a return of encephalitis lethargica – as yet – from a medical community that is somewhat forewarned, but it’s clear that inflammation can have very diverse effects, especially when it involves the brain. 

Canto:  But it’s like an undefeated enemy that has gone into hiding. We’ve defeated smallpox; tuberculosis and polio are in heavy retreat; leprosy seems as remote to us as the Bible, but this sleeping sickness, some of the victims of which have died within our lifetimes, has tantalised us with its bizarre and devastating effects, but has never really given us a chance to fight it.

Jacinta: Yes fighting is what it’s all about. The anti-vaxxers and the natural health crowd seem to want to leave everything to our immune system, to let diseases take their course, killing and maiming a substantial percentage of the herd to let the remainder grow stronger. If they were to read some of these case studies, to witness the lives of young Rosie, Adam and Ruth, they would surely think differently, if they had a modicum of humanity. 

Written by stewart henderson

September 18, 2020 at 11:01 pm

My current health condition 1: it’s bizarre

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I can bear any pain as long as it has meaning

Haruki Murakami

stuff to learn about

I haven’t written for a while because I have a new health problem which flared up last Saturday, February 29, 2020. I had been feeling mild pain in my shoulder and I was lying on my bed reading when I tried to get up. Shooting pain from my shoulder down my left arm was so excruciating that I fell back on the bed and and lay down for a while before trying to get up again. Again I couldn’t get up because of the pain. I called for help but even with two of us it was difficult. I may have had a panic attack and exaggerated the pain of rising – I was gasping a lot. To cut a long story short Sarah called an ambulance (and the paramedic got me into a sitting position easily enough). I spent the next few hours in emergency at the Royal Adelaide Hospital.

Due to being given Panadol in the ambulance, and a long wait in reception while the painkiller took effect, by the time the friendly, efficient and strikingly beautiful (oh dear) young intern saw me, the pain, my only symptom, had much reduced. She found that, yes, I could move my arm above my shoulder, flex my elbow and my wrist, and no, I couldn’t precisely describe the nature or location of the pain. She checked my arm for swelling or redness (none), and asked about any recent history of injury to the region (none). I was beginning to feel like a fraud, a malingerer, a milquetoast.

So after some more prodding and questioning and advice from higher authorities, I was released with a report for my local doctor.

I’m very left-handed, so this left arm pain is quite a problem for me. I was due to work on the Monday and I needed some pain relief. It would have to be over the counter at first. The report’s only solid conclusion was ‘skeletal-muscular pain’. Since I needed to work on Monday and Tuesday I could only get to the GP on Wednesday. So on Sunday I started doing what research I could. I’ve never taken regular medication for anything, and I’ve never experienced regular pain like this. The only over-the-counter treatments for pain are ibuprofen and paracetamol as far as I know. Only ibuprofens is an anti-inflammatory. Paracetamol works on pain centres in the brain. Which one would work best? Was it all in my mind? But don’t we always feel pain via the brain? Isn’t that how the nervous system works?

I obtained both medicines. Over the next day or so I experimented with both, singly and in combination, and I got through Monday and Tuesday’s work. The pain never went completely away, though the teaching days, when I had to concentrate on and interact with my students and other teachers, helped to distract me from it, which gave me that guilty ‘it’s all in the mind’ feeling.

Even so, on Wednesday (March 4), the pain came roaring back. My subjective sense told me that the paracetamol was much more effective than the ibuprofen, another surprise. I visited my GP, who smiled at the hospital report, saying, ‘yes, they wanted you out of there as soon as possible – they’re there for acute, intensive care stuff, it’s understandable – a GP can refer you to a specialist, and we can go from there’. So he filled out a referral form for St Andrews Hospital, for an x-ray and an ultrascan. I rang them and organised an appointment, for Friday, March 6 at 11am.

I was still in pain, though. The OTC medication had reduced the pain to more bearable levels, but I still hadn’t worked out which worked best. Unlike me, Sarah was on many medications, for pain and other problems, including Prodeine (paracetamol plus codeine) and a set of tablets which combined paracetamol and caffeine. I was taking the tabs at the upper level of what was recommended, and beyond. I was trying to monitor the pain, what it felt like. It was always a low-level throbbing, which increased and became a shooting pain if I used the arm too much. It was a strange delayed pain – I would engage in a flurry of physical activity, such as preparing a quick meal, and then lie down, knowing that the pain would rise up as a result of the activity, then slowly subside. I had difficulty sleeping, and I dreaded dressing myself in the morning. Typing this is giving me an ache, and I’m experimenting with dictation – I find the Apple dictation system a pain (mentally speaking). I have to learn more about how to use it effectively.

Stupidly, I hadn’t asked my GP about stronger prescription medication. The day after the consult (Thursday, March 5) I had Sarah ring the surgery – I was experiencing bouts of serious pain, and was finding it hard to track what medication was working, or not. The doctor wrote a prescription, which Sarah collected and had made out at the pharmacy around the corner. It was for ibuprofen (200mg) and codeine phosphate hemihydrate (12.8mg). I was skeptical about the efficacy of ibuprofen, and I had been researching anti-inflammatories, and inflammation generally.

What, exactly, is inflammation? There are, supposedly, five signs of it, remembered under the acronym PRISH – pain, redness, immobility, swelling and heat. My only symptom was pain. There was certainly no redness or swelling. Immobility wasn’t a real problem either. I could move my arm above the shoulder, I could flex my elbow, etc, but some pain would come afterwards. Heat wasn’t something I could measure, but it didn’t seem an issue. Only pain. And I hadn’t pinpointed any cause of all this. I remembered what I’d said, quite often (or at least I thought I did – maybe I was mostly saying it to myself) to the intern at emergency: ‘It’s bizarre!’

Anyway, I’ll wind up this piece, and start on a new one, dealing with my time at St Andrews Hospital, the x-ray and the ultrasound.

Written by stewart henderson

March 8, 2020 at 12:43 pm