Awakenings

Bought in early November, a book which has been remarkably productive in terms of further reading, mostly in the form of former library books from the US, mostly in the pending tray. One cluster about biological time, the various ways in which it can be disrupted and the topology involved, with one Arthur T. Winfree at the centre of the cluster, and helped along by reference 9, turned up at around the same time for some quite different reason. Another, smaller cluster about Parkinson’s disease and its treatment more generally. Also of posts, with three and a half so far – the half being the twaddle of reference 4, at a further remove. Second cousin rather than first cousin, as it were.

To quote from reference 1: ‘… A book about [the late Oliver] Sacks’ use of a drug called L-dopa in the late 1960’s on a group of patients in a long-stay institution, mostly suffering from the long term [Parkinsonian] effects of a bout of a now obscure disease called encephalitis lethargica…’. Patients sometimes affectionately known as enkies. Parkinson’s disease was known to be mixed up with problems with the dopamine cycle and its precursor L-dopa (aka levadopa and not to be confused with its enantiomer, D-dopa), was introduced in the 1960’s with some success. Sacks thought he would try it on his group of enkies: not a shot in the dark, as it had been a success with regular Parkinson’s patients, but certainly something by way of an experiment. Could he help these abandoned people?

With Sacks being a writer with whom I get on, with my last read being the autobiographical ‘Uncle Tungsten’, which I found fascinating, sparking a ramble through the periodic table, culminating with my being presented with the jigsaw noticed at reference 6. Slightly shocked on checking, to find that I read about Tungsten six years ago and noticed at reference 5 – when I would have guessed one or two. Clearly something wrong with my internal clocks, to which I shall return in a moment.

The present book now finished and we have also done the film of the book (reference 7).

One of Sacks’ first books, clearly a great success at the time, and which I found a fascinating read - but marred to my mind by excessive use of medical terminology which this lay reader found tiresome. I was forever reaching over for my telephone to ask Cortana or skipping over and hoping it did not matter – not realising until it was a bit late that there was a glossary at the end – not that it would have made that much difference if I had.

The guts of the book is a series of vignettes about twenty of Sacks’ patients at Mount Carmel Hospital in what had been a leafy suburb of New York, mostly born in the first decade of the last century, whom Sacks came across in the mid to late 1960’s. A hospital with a made up name in a made up place, apparently based on his work in a charity hospital in the Bronx (which I don’t know but don’t think of as very leafy), whose anonymity I have been unable to penetrate. Quite possibly one of the many long stay mental institutions closed in the US, just as here in the UK (not least our own Epsom and Exe Vale clusters), in the closing decades of the twentieth century, with plenty of closures generally recorded at reference 8. I dare say if one lived in the Bronx one would know.

These vignettes occupy about half of the 400 pages and are bracketed by introductory material, introductory chapters, closing chapters, appendices, glossary, bibliography and index.

The central drama is two fold. First you have a group of patients, more or less moribund and largely inaccessible for years, miraculously woken up by this wonder drug called L-dopa. But after a while it all goes terribly wrong, with most of the patients suffering from frequent and unpredictable swings between a bad place and a good place, a strange variation on the presently fashionable bipolar disorder. Some of them settled down; some in a fairly good place, some in a more or less non-existent place. And some just died.

One of the vignettes concerns a patient known to us as Leonard L, admitted to hospital from post-graduate studies at Harvard when he was around 30. A severely challenged patient who could, nevertheless communicate with a letter board and along the way produced a 50,000 word autobiography – which does not appear to have reached the public domain. Initially spectacular results with L-dopa, then all kinds of problems. He gradually deteriorated, eventually gave up and died when he was around 60 in the late 1970’s. He was the patient portrayed by Robert de Niro in the film.

One of the interests for me in this book was the hope of finding out about the subjective experience of people who are locked-in in this kind of way. One is awake, one can hear what is going on, one can see – but one is more or less immobilised and more or less unable to communicate with others. One suggestion was that there was just a sort of, a sense of emptiness. A world in which nothing much seemed to be happening. There might have been more from the autobiography just mentioned, but this has resisted online attack and I dare say it is lodged in some university library, away from the prying eyes of the public at large.

The film makes something of the poem called ‘The Panther’, quoted by Leonard L and written by Rilke in 1902, in response to seeing a panther pacing a cage in a zoo in a park in Paris, nothing to do with personal experience of incarceration in an institution. But an evocative piece nonetheless. It also seems that Rilke, at one time, knew a chap called Ernst Toller, unlikely to be any relative of mine.

One of Sacks’ suggestions was that a lot of the Parkinson’s symptoms that these patients had were to do with time. That there was something wrong with one or more of the many internal clocks needed to keep us ticking over properly. Perhaps when the enkies froze, they were not actually frozen, they were just moving very slowly. Or perhaps the clock which went with sensory signals coming in from the feet had got out of time with the clock which went with the generation of motor commands to the feet – which could, for example, create the sensation of going uncomfortably downhill when actually going along a very flat corridor. Something wrong which could sometimes be put right, at least on a temporary basis, by a suitable rhythm being provided from the outside, perhaps the regular tiling of the floor, perhaps the right sort of music, perhaps the touch of someone at your elbow moving along with you. At other times, patients would respond to a physical imperative, like a ball coming at them, which, to everyone’s surprise, they would catch and return in an impressively normal way.

The film does a good, sugar coated job, concentrating mostly on the first half of the central drama. It does well at conveying the atmosphere of a long stay mental institution of that time. It highlights three important issues. First, being sure that it is right to meddle in this way. If I was going to do such a thing, I would want to know that I had the support of colleagues and relatives, if not the informed consent of the patient. I would not want to have to go it alone. Second, the expense. I don’t know whether this particular drug was expensive – as the film suggests – but a lot of modern drugs are, and the cost of drugs is a real issue in long term care decisions, whatever the Sun, the Daily Mail or Mr Corbyn might say on a bad day. Third, the relationship of carers with their chronically ill carees, a relationship which can be troubled and difficult, particularly with carers who are also relatives and who also really care.

PS: I ought to add that as of near twenty years ago, L-dopa remained central to the treatment of people with Parkinson’s disease, despite its various problems, that is to say unpleasant side effects. Some of the problems arise from the vagaries of its absorption by the small intestine and its short half life once in the body; keeping the stuff at the right level in the blood is difficult. Coincidentally, the broad beans of which I have made such a performance in past, are one of the better natural sources of the stuff. See references 11 and 12 – while I associate to the vagaries of warfarin, with which I am better acquainted.

References

Reference 1: https://psmv4.blogspot.com/2018/12/a-parable.html.

Reference 2: https://psmv4.blogspot.com/2018/12/heritage-science.html. 

Reference 3: http://psmv4.blogspot.com/2018/12/awakenings-on-stage-and-screen.html.

Reference 4: https://psmv4.blogspot.com/2018/12/whats-in-name.html.

Reference 5: https://psmv2.blogspot.com/2012/11/science.html.

Reference 6: https://psmv2.blogspot.com/2014/11/jigsaw-9-series-3.html.

Reference 7: Awakenings – Robert de Niro, Robin Williams – 1991.

Reference 8: https://en.wikipedia.org/wiki/List_of_hospitals_in_the_Bronx.

Reference 9: The layout of iso-orientation domains in area 18 of cat visual cortex: optical imaging reveals a pinwheel-like organization - Bonhoeffer T, Grinvald A – 1993.

Reference 10: Awakenings – Oliver Sacks – 1973. Picador edition of 2012.

Reference 11: https://en.wikipedia.org/wiki/L-DOPA.

Reference 12: Levadopa: 30 years of progress - Tanya Simuni and Howard Hurtig – 2002. Chapter 32 in an early edition of a fat book for doctors edited by Factor and Weiner.

Reference 13: https://en.wikipedia.org/wiki/The_Panther_%28poem%29. The source of the translations of ‘The Panther’.