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In 1918 there was a massive outbreak of encephalitus lethargica, a virus that is also known as sleeping sickness. Millions became very sick and a great many died, but for the survivors there was a bigger challenge waiting for them. Over the following years (between one and forty years later) they started to manifest distressing mental and physical symptoms; facial and bodily tics, uncontrollable movements and speech, frozen limbs and frozen actions, all similar to Parkinsons disease. Many of these patients ended up in asylums as their families became unable to care for them and slipped out of sight and out of mind. In 1969 a young doctor entered Mount Carmel asylum to examine the two hundred or so sufferers who had in many cases been there for decades. He tried a new drug on these patients, L-Dopa, and the results shook the medical profession as the patients awoke from their Parkinsonian state.
Awakenings was written by Oliver Sacks (the young doctor in question), several years later using his notes that he took at the time of the drug trials. Now a highly respected professor of clinical neurology he has also shown a great talent for writing and this book is a fascinating read. The core of the book is the case studies, twenty individual assessments on the patients who received the miracle drug and their individual battles and reactions to L-Dopa. Doctor Sacks has included a great deal of information about their lives before they contracted the virus and has endeavoured to show the individual reactions to the disease as well as the effect it had on their families.
Some of these stories are immensely sad; lives cut short in their prime or before they had even begun and they provide an intensely human background to the clinical and medical description of their symptoms. Their lives in the asylum are zoomed over quickly, reflecting the slow moving atmosphere of life in a terminal hospital at this time. A brief over-view of the development and manifestation of their symptoms shows the startlingly different ways in which the disease progressed in each individual and often the amount of control that they had, or didnt have over their bodies and minds. This range of symptoms varying in intensity and method are reflected also in their reactions to L-Dopa when it was administered, no single patient acted in the same way as any other even though on the whole the effects were astounding! I found this the saddest part of the book, after so many years of frozen life these patients were given a whole new awakening which in many cases turned out to be a bitter gift. There is a great deal of fascinating material on their reactions to being awoken and their interpretations of their illness; Sacks has tried wherever possible to follow up on the patients to at least 1972.
There is a great deal of medical terminology, but there is a glossary at the back to deal with some of the more perplexing words (kyphrotic anyone?). Sacks has written this as a medical story or examination rather than a clinical report which makes it much more accessible to those of us who never got further than a GCSE in science. Footnotes can dominate the page but these add huge amounts of information and scope to the basic study, including Sacks own experiences with other Parkinsonian patients, excerpts from other studies and patient notes, philosophical questions about the nature of these experiences and plenty of other medical information. Although I found some of this hard to get my head around, it is easy to skip or skim certain portions without losing the impact and theme of this book.
In addition to the case studies Sacks also includes a preface detailing how he came to write the book and his interests in Parkinsonian patients, the reactions to his initial reports on the drug trials and his experiences of antagonistic and disbelieving colleagues. I enjoyed reading this section as it provides some interesting background to the trials themselves. There are also sections on Parkinsons disease and Parkinsonism which include a look at the way in which the disease can manifest itself and insights from patients with Parkinsons on how they perceive and experience the disease.
A series of short chapters introduce encephalitis lethargica, life at Mount Carmel and finally how L-dopa was developed and trialled on Parkinsonian patients in other institutions and clinics before Sacks used it on his patients. This provides us with a great deal of additional information on the situation and environment of the patients and the way in which the environment can impact on the progression and symptoms of a disease. These patients were all part of a community, their progress was affected by those undergoing similar experiences around them.
The final section follows the case studies and is a series of more philosophical and literary essays dealing with, as Sacks says the far reaching implications which rise from the subject. These essays are heavy on literary allusions and philosophical/psychological terminology and I found them somewhat heavy going, skipping and skimming certain portions. The Appendices however are a delight, examining the history of Sleeping Sickness, the nature of Parkinsonian Space and Time and the current situation regarding L-Dopa.
Photos are included in the book of several patients, both in a section in the centre of the book and scattered occasionally amongst the pages. These really bring to life the situation of the patients as we see them motionless and twisted in wheelchairs, lining the corridors of the institution they were confined in; or frozen in a Parkinsonian moment waiting to be released. I returned to them regularly as it reinforced the fact that throughout all the medical jargon and terminology these were real people and we were watching and reading about their tragedies slowly unfolding.
This book is both easy and difficult to read; it is possible to skim read it and pick up the inherent gist and theme of Sacks narrative or to delve deep into the L-Dopa drug trials, their physical, psychological, philosophical, mental and global effects. Its subject material is compelling enough to pull you through the mires of medical terminology and Sacks has expanded mightily on his main subject to hold interest. It is more accessible than most medical writing and intensely human as Sacks has moved away from simply clinical descriptions and results. I found it difficult to put the book down, especially when I reached the case studies, they combine the clinical symptoms with the essential human tragedy that they mask.
I put the book down with an increased insight into the world of the 1920s and 1960s, the motivations of doctors and their methods, the individual and fascinating workings of the human brain and a greater understanding about the hidden life of a patient living in an asylum. This last item was the most important to me as the treatment of mental illness is a particular interest of mine. I would thoroughly recommend this book as I was enthralled for days by it; the case studies alone are just compelling.
I believe a film was made from this book starring Robin Williams and also called Awakenings, but as I havent seen it I cant comment on its accuracy or entertainment value. My copy (an older version) does include an examination of the film and its message as well.
Sacks has written several of these readable medical books including:
The Man Who Mistook His Wife For A Hat
An Anthropologist on Mars
A Leg to Stand on.
RRP on the most recent edition is £8.99 but Amazon have it for £6.74 or from 77p on Marketplace. Older editions are available as well.
The sleeping-sickness epidemic of 1918 caused hundreds of survivors to slip into a bizarre rigid paralysis with similarities to advanced Parkinson's disease. These patients, only occasionally able to communicate or move, were nearly all institutionalised for life, their ranks increasing every now and then with similarly afflicted men and women. Sacks came to work at a long-term care facility shortly before the first exciting results with L-DOPA and Parkinson's in the late 1960s and his patients soon embarked on dramatic, difficult recoveries from up to 50 years of torpor. He documents their spiritual and medical obstacles with great care to portray their individual personalities, long suppressed but finally released. Though many great doctors are also great writers, few can compare with Oliver Sacks for expressing the relation of medicine to the human spirit.