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First finding out about the colour blindness of Pingelap


The epicentre of the Lytico-Bodig disease
Oliver Sacks Scientist
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We arrived at a little village called Umatac. Umatac was built at the point where Magellan had reached Guam in, whatever it was, 1534. And Umatac was somewhat remote from the other villages and towns on Guam, but Umatac was also the epicentre of this disease. And this is why John was living there surrounded by patients and their families, and... and just above the village there was the graveyard which he took me to, and there a gravedigger said, 'My sister’s here and there’s a cousin and there’s her cousin’. And... and one saw that the whole family structure, all the families in Guam, had been affected by this disease.

These – I’ve spoken about house calls metaphorically – but I literally went with John on his house calls. In a way it reminded me of how, when I was 12 years old, I used to go with my father on house calls. And though this time I didn’t wait downstairs, I would… I didn’t... I didn’t wait downstairs, I went with John to see the patients. And the… all this was deeply interesting me... all this was deeply interesting to me as a neurologist because, indeed, in terms of symptoms a lot of these people were very much like my own patients, my own post-encephalitic patients. And like my own patients some of them sometimes responded to tiny doses of L-DOPA, which someone with ordinary Parkinson’s would never respond to, and showed very striking changes. But it was also very important at a human level because my patients had been put away for decades, had lived in hospital, whereas people with Lytico-bodig, as this disease was called, were still with their families and with their villages. Part of the family, part of the community and... their personhood was fully recognised and with them to the end. I'm... this made me think how barbaric our own medicine and our own customs were in the civilised world, where we put ill or demented people away and try forget them. And, I think, not the... not the least tragedy of being chronically ill or demented is that one has become an un-person, an object in a nursing home. I will say that this does not happen with the Little Sisters of the Poor, where there is wonderful, human caring and a sort of, community. But it can happen.

Oliver Sacks (1933-2015) was born in England. Having obtained his medical degree at Oxford University, he moved to the USA. There he worked as a consultant neurologist at Beth Abraham Hospital where in 1966, he encountered a group of survivors of the global sleepy sickness of 1916-1927. Sacks treated these patients with the then-experimental drug L-Dopa producing astounding results which he described in his book Awakenings. Further cases of neurological disorders were described by Sacks with exceptional sympathy in another major book entitled The Man Who Mistook His Wife For A Hat which became an instant best seller on its publication in 1985. His other books drew on his rich experiences as a neurologist gleaned over almost five decades of professional practice. Sacks's work was recognized by prestigious institutions which awarded him numerous honours and prizes. These included the Lewis Thomas Prize given by Rockefeller University, which recognizes the scientist as poet. He was an honorary fellow of both the American Academy of Arts and Letters and the American Academy of Arts and Sciences, and held honorary degrees from many universities, including Oxford, the Karolinska Institute, Georgetown, Bard, Gallaudet, Tufts, and the Catholic University of Peru.

Listeners: Kate Edgar

Kate Edgar, previously Managing Editor at the Summit Books division of Simon and Schuster, began working with Oliver Sacks in 1983. She has served as editor and researcher on all of his books, and has been closely involved with various films and adaptations based on his work. As friend, assistant, and collaborator, she has accompanied Dr Sacks on many adventures around the world, clinical and otherwise.

Tags: Lytico-Bodig disease, Umatac, Guam, L-DOPA, Little Sisters of the Poor, John Steele

Duration: 3 minutes, 42 seconds

Date story recorded: September 2011

Date story went live: 02 October 2012