Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


“Awakenings”, by Oliver Sacks

Awakenings is an extraordinary and remarkable book, but it is not an easy read – not least because of the depth of medical detail included (although this is alleviated by Sacks’ skillful writing). It is also emotionally challenging – particularly when you, or someone close to you, has Parkinson’s.

Of course, most of the people described in this book do not have Parkinson’s. They have Parkinsonism, which is a term used to denote “symptoms similar to those described by Parkinson”, and their symptoms are frequently much more extreme than those experienced by people with “ordinary” Parkinson’s Disease. These people are the survivors of a mysterious “sleepy sickness”, encephalitis lethargica, that struck in 1916-17 and ceased – suddenly and mysteriously – in 1927. Some had apparently recovered completely, only to relapse in later life into a form of torpor that necessitated hospice care. By the 1960s, there were several groups of these patients in a number of institutions around the world. Oliver Sacks, a neurologist, worked with one of the largest of these groups in a hospital in the United States; in 1969 he was instrumental in prescribing what was then a new drug, L-DOPA (levadopa), to these patients, and witnessed their extraordinary “awakenings” from their illness – and their subsequent “tribulations”, caused by the drug.

The book’s core – and its most readily digestible part – is the series of case studies that make up the majority of its pages. These tales were controversial in academic medical circles at the time of publishing (they were seen as being overly anecdotal, too subjective), but they account for the book’s popularity and longevity – and, of course, for the many adaptations that have been made of it, from documentary to stage play (Harold Pinter’s A Kind of Alaska) through to the well-known film starring Robert De Niro and Robin Williams.

Sacks, who worked with these patients for many years, tells the tales succinctly but with great empathy and sensitivity. He also presents the medical background and, from the 1990 edition on, discusses the history of the book and its legacy. He talks about “Parkinsonian Time and Space” – which seems to be highly mutable and to have only a passing resemblance to “normal” reality (it sounds very redolent of a science fiction novel, but the subject is just to big to treat in parentheses) – and suggests that chaos theory may be a useful tool in investigating the condition. All of this is genuinely fascinating, but does require the reader to paying proper attention.

There are a few case histories of people with Parkinson’s included in the book. Sacks refers to them as having “normal” Parkinson’s, and is careful to note the differences between the “enkies” (the jocular term used in the book to describe sufferers of post-encephalitis lethargica) and the “parkies” (an equally jocular term, but not one used in the book). The enkies tend to have very extreme symptoms, from which their awakenings are very dramatic. They also tended to crash into the tribulation phase very quickly, but, should they manage to reach an “accommodation” with the drug, the non-progressive nature of their condition meant that the accommodation, or compromise between their illness and the drug-induced tribulations, could be maintained almost indefinitely.

In the third part of the book, “Perspectives” (after the case histories), Sacks says, by way of reassurance, that:

the patients considered in this book do not constitute […] a ‘fair sample’ of the Parkinsonian population at large; the fact that many of our patients have run into exceedingly severe, complex and intractable problems is an index of their situation, which is far worse, in almost every way, than the situation of their more fortunate Parkinsonian brethren outside institutions. Their reactions to L-DOPA, in almost every way, are hyperbolic and extreme […] [Q]uantitatively, their reactions far outstrip in magnitude those likely to e seen in the vast majority of Parkinsonian patients, but the quality of their reactions is the same, and casts light on the reactivity and nature of all Parkinsonian patients, and of all human beings.

I do kind of wish that I had read that sooner (although something of the kind had been intimated earlier).

Awakenings is a highly complex book, and I am aware that I have scarcely expressed an opinion beyond the opening paragraph’s “extraordinary and remarkable”. It is extraordinary; it is remarkable; and I would wholeheartedly recommend it to all inquiring minds – with the caveat that some of the real life stories related within are potentially upsetting, especially if you are affected by Parkinson’s. I was frequently moved to tears, but as I progressed through the book, those tears were less in fear for my own future – remember, I have not taken L-DOPA at the present time, although I am fully aware that it is almost inevitable that I will, one day, need to take it – and more in sympathy with the people whose lives are described.

Awakenings is well worth the effort required to read it. It is not a dense, heavy-going medical text; Sacks is an excellent writer whose humanity and compassion shines through. His text is a paragon of science writing; it is literate, well formed, and is pitched just right – it neither patronizes the reader nor does it leave key concepts unexplained (there is a glossary included at the back of the book, but most of the terms were explained in context and I did not, personally, feel the need for it). L-DOPA is not the miracle drug that it was once believed to be; Sacks does not propose any alternative, but he does intimate that the experiences of his patients may prove helpful in future research on Parkinsonism. From a wider perspective, Awakenings helps the reader achieve a small insight into clinical neurology, and a much larger one into human nature – as all the best literature ought to do.

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