My first of Sacks's books, which kept my going through his entire oeuvre. ( )

an unimaginable experience, like being in a time machine for the patients involved and bot touching and heart-rending ( )

Finishing this I find myself returning to what I wrote on here 3 years ago (woof) about The Man Who Mistook His Wife for A Hat - Sacks has this humanistic, personable mode that's really great, and this dry, academic/polymath mode that can be really hard to follow. I enjoyed this quite a bit, but unlike Man Who... I feel like it was mostly despite that other part of Sacks. I look forward to reading more from him, but I think I'm going to pursue his memoirs rather than his more medical writings. ( )

The most devastating book ever. ( )

What I got out of this book is that illness is a coping mechanism. L-DOPA removed one illness response to life. That illness then gets replace with another coping mechanism, which we call a side effect. The greatest value from this book comes from the reminder that we are whole beings with experiences and unmet needs that cannot be met with the addition of a drug or drugs.

Here are some notes that I jotted down while reading.

One third of the way through the book, in every case so far Oliver Sacks increased the does to 3 grams/day and saw bizarre symptoms (problems were sometimes there before the dose increase). It made me wonder if a smaller dose might have been more effective. But no, getting the dosage right was a balancing act that tended to get more difficult after the patient had been on L-DOPA for a while.

Lucy K was lucid for one day. Even increasing the dose to 5 grams/day did not bring her back. She died 2 years later. Several patients had a similar response: They tried the medicine that brought back some normalcy, found life still unacceptable, got discouraged and wasted away

“We rationalize, we dissimilate, we pretend: we pretend that modern medicine is a rational science, all facts, no nonsense, and just what it seems. But we have only to tap it’s glossy veneer for it to split wide open, and revealed to us it’s roots and foundations, it’s old dark heart of metaphysics, mysticism, magic, and myth.” (Page 28-29 of 408)

Miriam H at almost halfway through the book told the Dr. to resume L-DOPA and she wouldn’t have complications. He did and she continued to function well on it. Some other patients also correctly told how their future health would go.

“She goes mad in your madhouse because she is shut off from life.” (Page 160)

Some of his patients develop Parkinson’s symptoms early in life, others in their 40’s or 50’s.

Footnote 88: “Life changes, powerful emotions, cannot only exacerbate, but can precipitate parkinsonism. … it has been shown that dopamine levels may be reduced in the brain by 30-50% without producing any clinical symptoms; but that if it is reduced still further, to less than 20% of normal, parkinsonian symptoms promptly appear. (Pages 191-193, yes, an extended footnote)

“In the sixteenth month on L-DOPA ... (Mr. E’s return) to Mount Carmel Hospital ... caused a wave of apprehension among the seventy other Parkinsonian patients receiving L-DOPA. They had seen Mr. E. leave in triumph, and now they saw his tragic return.” (Page 196)

A number of patients, including Mr. E. Managed to achieve some level of a normal life with or without L-Dopa.

Being trapped in the Parkinsonian state was described as: ‘a mixture of nagging and pushing and pressure, with being held back and constrained and stopped. ... The absence is a terrible isolation and coldness and shrinking - more than you can imagine, Dr. Sacks ... a bottomless darkness and unreality. ... a sort of total calmness a nothingness, which is by no means unpleasant. It’s a letup from the torture. ... it’s something like death.’ (Page 205)

L-DOPA crosses the protective blood–brain barrier, whereas dopamine itself cannot.[4]Thus, l-DOPA is used to increase dopamine concentrations in the treatment of Parkinson's disease and dopamine-responsive dystonia. (Wikipedia)

The chapter “Tribulation” is summed up in this statement: “The perverse need for illness — both in patients themselves, and sometimes in those who are close to them — must be a major determinant in casing relapses, the most insidious enemy of the will-to-get-better:” (Page 263) ... “we must ... deal with the person and his being-in-the-world.” (Page 265)

“The need for rest becomes especially important, whether in the form of night-sleep, ‘naps,’ ‘taking it easy,’ or ‘relaxation.’ ... One observes this even in out-patients with Parkinson’s disease, ... and may be considerably in excess of ‘normal’ needs;” (Page 268-269)

The L-DOPA experiment wasn’t as dire as I understood it to be before I read the book. “We still have more than fifty survivors at Mount Carmel, most of whom require, and are maintained on, L-DOPA.” (Page 278)

Contact with other humans is crucial. “Many a Parkinsonian cannot walk by himself ... yet he may walk perfectly if there is someone with him.” (Page 281) ( )