Sunday, December 31, 2023

Reading Those Classics #24

Classic Science Writing. This 1973 book has vivid description of symptoms to assist the lay reader. To see how sick these patients were, check out a 1974 Yorkshire TV documentary by Duncan Dallas. It's grim, but also gives a sense that Sacks was what my mother would have called “a real character.”

Awakenings – Oliver Sacks

In the late Sixties Beth Abraham Hospital in the Bronx had about 80 frozen patients. They had been sitting or lying for decades and needed assistance to do all the activities of daily life.

These afflicted people were the survivors of the pandemic of sleeping sickness (encephalitis lethargica, no tsetse flies involved) that lasted from the end of WWI to about 1928. Typically patients would fall into a coma-like lethargy, lose the ability to swallow, become emaciated and soon die of starvation. Survivors suffered post-encephalitic parkinsonian syndrome, which has neurological symptoms such as a transfixed face, sleepiness, catatonia, problems with posture, tremors and immobility.

Consigned to hospitals and asylums, these disabled and debilitated people lost contact with their families. All aspects of their behavior and emotion were affected; their personalities changed from shyness to wisecracking to violence and lewdness. Their psychology, thus:

Some of these patients had achieved a state of icy hopelessness akin to serenity: a realistic hopelessness, in those pre-DOPA days: they knew they were doomed, and they accepted this with all the courage and equanimity they could muster. Other patients (and perhaps, to some extent, all of these patients, whatever their surface serenity) had a fierce and impotent sense of outrage: they had been swindled out of the best years of life; they were consumed by the sense of time lost, time wasted; and they yearned incessantly for a twofold miracle – not only a cure for their sickness, but an indemnification for the loss of their lives. They wanted to be given back the time they had lost, to be magically replaced in their youth and their prime.

In 1966 English neurologist Dr. Sacks started to doctor in Beth Abraham. Soon after this, the medication levodopa (hereafter, L-DOPA) began to be promoted as the miracle drug for parkinsonism. Sacks received approval from the FDA to test the drug on patients with encephalitis lethargica.

As to the rights of subjects in research, Dr. Sacks started this project before the Tuskegee scandal in 1972 and the 1976 Belmont Report, which asserts informed consent as a basic ethical requirement in the conduct of research with human subjects. So for Dr. Sacks and other biomedical researchers of the time “informed consent” wasn’t a thing. In one case after the patient refused treatment with the medication, Dr. Sacks admits that he administered L-DOPA “by stealth” in her food.

Granted, Dr. Sacks hesitated a long time before he provided L-DOPA to his patients. He was concerned that the patients could be “sleeping volcanoes” that may erupt if they were released from their prison of immobility. Plus, what would it be like for them to suddenly find themselves in 1969 after not being a part of daily life in the world for decades?

Because patients were deteriorating and dying, he began administering L-DOPA in the early summer of 1969. It had different effects among patients and within the same patient. Lola got a dose in May 1969 and was transformed in only few seconds. She flew out of her chair and strolled down the hall for the first time in years. By autumn, however, her states became more and more extreme between frozen and wired.

The most dramatic case was Sylvia, who had suffered 35 years of frozenness. Sylvia had never moved on from the Roaring Twenties. Everything she said and did referred to 1926 and before. Her mannerisms and slang were those of a flapper. Sylvia talked about Gershwin as if he were still working. She later said she knew that it was 1969, but she felt it was 1926, that she was still young, that things of 1969 registered but they were not real to her, that she had not lived her life. She didn’t feel a sense of belonging to the time in which she found herself and the world had changed in ways that she did not like (e.g. the tripe of late Sixties American TV). After 10 days she returned to a trance-like state and never came out of it despite repeated doses of L-DOPA.

During the summer months many patients became more animated and their lively activity made the hospital less institutional. Then things started to go very wrong in the fall of 1969. Physical symptoms and psychological signs like nightmares came back and the ward heard again sounds of screaming, crying, yelling, moaning. For a few of the patients, their regression seemed about as bad as it could be. But most of patients negotiated through this bad period and accommodated with their diseases in physiological, psychological and social terms.

Sacks learned that to make people whole, to help them make a new life, it is not enough to awaken them with a novel medication. They had damaged nervous systems and old symptoms came back. In a tribute to human adaptability, a way to reach accommodation with the failed drug trial was through work, such as cobbling shoes for Miron V. Music was very important to some patients, especially dancing and singing. Patients needed to look for personal relations that would help.

This is an amazing work. It is no surprise it has inspired a play, a documentary, a movie with Robin Williams, a ballet and an opera.

Click on the title to go to the review.

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