January 2024

Entry 13 in the Essays Project with CT; this is the seventh book we’ve read by Oliver Sacks. This is the book that, with the help of a documentary and then movie, transformed him into something of a celebrity. It is an account of the experience of ‘awakening’ patients with Parkinson’s induced by Encephalitis Lethargia by administering L-Dopa, their experiences of returning to a sort of normal life, and then their declines due to the follow-on negative effects of L-Dopa.

This is the 1990 edition of the book — the most recent of the approximately 6 versions the book has gone through, according to the front matter. In accordance with what we’ve seen in Sacks’ autobiography, On the Move, he finds it difficult to stop work on a piece of writing; it sounds as though each edition of the book has changes, sometimes in great quantity.

Later. It is difficult to understand the impact of this book. It is not at all accessibly written (perhaps the first edition differed in that); the first 200+ pages are case studies written in clinical language, and moreover the cases are almost all dire and depressing. It is difficult to imagine most people reading this book.

Contents

Front Matter

The front matter includes acknowledgements, three prefaces to earlier editions, and a prologue. Following those, it has short chapters on Parkinson’s, the Encephalitis Lethargia epidemic, the aftermath of the epidemic, life at the hospital where the events of the book take place, and the L-dopa. I will call out a few points of interest.

Sacks makes it clear that he is taking a more qualitative biographical approach, and argues for its importance.
He notes that the events of Awakenings were not simply 80 individual cases, but rather that the hospital, particular they encephalitis ward, had become something of a community, and the patients formed bonds as they awakened together, became fully functional, and then experienced the increasingly pernicious follow on effects of L-Dopa
The Parkinson’s induced by Encephalitis Lethargia is notable for its diversity of symptoms and the widely varying ways it manifests itself across patients. As such, studying the deficits and excesses it produces, holds out the promise of a new understanding of the organization of neural behavior. In addition, the the fact Encephalitis Lethargia largely leaves higher mental functions intact, means that those who experience it can report on it.
Sacks notes that initially his letters to the Lancet, and subsequently his book, was ignored or attacked by the medical establishment. He was shocked by this, and displays what feels like a bit of pay-back in his various forwards.
He comments on the way the hospital where these events take place had changed in the mid-60’s, with the advent of a new administration that put efficiency before patients.
The most interesting point is his speculation that some of the behavioral routines seen in Parkinsons, and I think especially in the follow-on to L-Dopa administration, are essentially behavioral ‘fossils’ from early human or even pre-human evolutionary stages.

Case Studies

The first nine of the case studies were part of the documentation Sacks submitted to his funding agency to convince them to allow him to give L-Dopa to all, rather than continue the double-blind approach with L-Dopa and a placebo. Sacks noted that he saw pronounced effects in precisely 50% of the patients in the study, and no effects in the other 50% of the study.

At this point, having read around a dozen case studies, I am struck at how mixed the results are: the cumulative after-effects of L-Dopa seem awfully malign, and I wonder a bit about the ethics. Is being conscious and suffering better than being in a life-long coma? Sometimes the answer is yes, but other times it seems like a pretty questionable proposition.

~+ Francis D (…secretary… helped a little…)

EL: She had EL at 15, which lasted about 6 months.
Just after EL: She lived an uninstitutionalized life for 30+ years, with only oculogyric crises. Things became worse in the next two decades until she was admitted to Mt Carmel in 1969.
Admission: 1969
Pre L-Dopa: She had a variety of Parkinsonian symptoms including akinesia and hyperkinesis and various tics and tremors.
Onset of L-Dopa: Sense of well-being, increased energy, lessened kinesthetic difficulties; but more tics, difficulties with breathing. Despite difficulties insisted on continuing L-Dopa.
Post L-Dopa: Her difficulties continued, and to them were added OCD-like compulsions for hand washing, and chewing. Yet she was able to enjoy occasional day outings with family where she was mostly free of symptoms. In the summer of 1969 she had a series of crises that lasted months, and she was taken off L-Dop. By 1972 she was living a muted sort of life, and requested that L-Dopa be restarted. She now is able to carry out activities of daily living 9 months a year, and deals with the negative effects of her regime the rest of the time.
Other things that helped: —
Summary: EL at 15, normal life for 3 decades, institutionalized in 60’s with increasing Parkinsonian symptoms. L-Dopa caused short term improvement, but then the aftereffects proved severe, and they eventually settled on an alternating regime of medications which allows her to get along, though her life is still constrained. Not one of the big success stories of L-Dopa.

…reading break…

+++ Magda B (…perfect L-Dopa story…)

EL: EL in 1918-19 for two months.
Just after EL: Recovered but after 4 years started showing symptoms of Parkinsons. Recovered, but after 4 years started showing symptoms of Parkinsons
Admission: Not clear… possibly in the 1920’s.
Pre L-Dopa: She had been institutionalized for decades, and was profoundly incapacitated: mostly passive, mute and motionless. Later she said she felt ‘nothing’ during her decades of immobility.
Onset of L-Dopa: After a week began talking, and progressed to writing and moving and showed recovery of emotional life.
Post L-Dopa: She had the best and smoothest response to L-Dopa Sacks has seen, and had few side effects. In 1971 she had a premonition of death, said goodbye to everyone, and died in her sleep.
Other things that helped: —
Summary: The best case for L-Dopa: She awakened from profound disability and was able to live in a rich and meaningful fashion for the (short) remainder of her life.

_+_ Rose R (…Flapper who awoke for a few days…)

EL: Had EL in 1926, the last year before it vanished. Had nightmares of immobilization, and then work up that way.
Just after EL: Immobile and preoccupied, but showed affection to family and uttered short phrases. They cared for her at home for 3 or 4 years, but after that developed more severe Parkinsonian symptoms and was institutionalized.
Admission: 1935, after more severe symptoms and her parents becoming to old to care for her.
Pre L-Dopa: Akinesithia, oculogryic crises, and could speak only in a whisper; very inward.
Onset of L-Dopa: After a week symptoms abate, and she is engaged with the world
Post L-Dopa: After a few weeks various kinetic and oculobyric issues emerge. She has disorders of thinking, some of them disturbing, some salacious, some positive. She develops severe motor tics, and other repetitive behaviors. She also becomes blocked, and there are long periods where there is “nothing, absolutely nothing” in her head.
Other things that helped: —
Summary: Only a temporary success. It worked for a while, but it seems as though in the end she is back where she was before L-Dopa.

– Robert O (…was glad he lived, in spite of EL…)

EL: Developed EL at 17, which lasted for 6 months.
Just after EL: For 8 years experienced reversal of sleep rhythm (nocturnal insomnia; sleepy during day); also reported disruption of thoughts: inability to stay on a thought, and intrusion of new thoughts. Began to develop twitches and other tics, but was able to continue working for a couple years; spent 2 decades at home on disability during which he became obsessive, reclusive and eccentric.
Admission: 1956, admitted with tremors and delusional thoughts.
Pre L-Dopa: Described as odd, charming, with unusual and sometimes shocking beliefs. Narcissistic, not very concerned with the rest of the world. Never angry or upset, but not apathetic either. He had various tics, tremors, odd speech, unblinking staring, but was one of the most active and independent patients.
Onset of L-Dopa: He was started on L-Dopa, but seemed to experience no positive effects: his tics became more severe, and his speech became too speeded up.
Post L-Dopa: In view of these effects, L-Dopa was discontinued and he returned to his pre-L-Dopa state. But this discontinuation seemed to affect his mood, and he became less pleasant and stopped many of his activities. After a while he began physically deteriorating, and L-Dopa was re-started. This time it appeared to affect his thinking, speeding up and fragmenting his thoughts. L-Dopa was discontinued, but his thinking did not return to normal, and his physical deterioration continued. A week before he died, he became lucid, and appeared to know he was dying. He said that he had thought about killing himself in 1922, and is glad he didn’t, even with the encephalitis.
Other things that helped: —
Summary: Not a success case for L-Dopa – possibly a case where L-Dopa made things worse.

++ Hester Y (…manages her severe symptoms…_

EL: No sign of EL.
Just after EL: No sign of EL, but in her 30th year she would freeze, for seconds, minutes or hours; a touch would suffice to unfreeze her. After 2 years other signs of Parkinson’s appeared, and she became strange and remote — at 35 she herself decided it would be better for everyone if she should be hospitalized.
Admission: Admitted at 36.
Pre L-Dopa: She was mostly motionless and speechless for decades, though was well liked because occasionally her humor and character showed through. She later said that during this period she felt nothing. She was remote but seemed to intensely concentrate; only swimming would bring her out of it a little. She eventually lost the ability to chew and was put on a liquid diet.
Onset of L-Dopa: After 10 days of administration she suddenly exploded: got out of her chair and started walking and talking and eating and writing. After a couple of days, she ‘speeded up’ and seemed to become manic, and then delusional. She was given thorazine, which interrupted this, and then connected to a lowering of L-Dopa dose; a few days later she requested that it be stopped, and returned to her pre-L-Dopa state. The entire ‘awakening’ — from explosion to the request to terminate L-Dopa – occurred in a single week.
Post L-Dopa: L-Dopa has been continued, except for occasional withdrawals. The patient has 100’s of different kinds of tics, but seems able to ignore them. She will also freeze, and during this period her thoughts and senses seem flat, and her vision may flicker like a projector going to slowly, and sometimes images of an action sequence will occur out of order. (Sack’s imagines a serial mixup, but it seems equally possible to me that images are being processed in parallel, and the processing is speeded up or slowed down for certain images which are thus ‘released’ out of sequence.) In spite of all this, Hester Y appears to be able to manage her reactions, just letting the ticks happen, and developing ways of managing the side effects; all of this is also enhanced by the fact that she has managed to re-establish relationships with her children.
Other things that helped: Swimming. Relationships with children/
Summary: This is, in effect, a success case, but — according to Sacks – it may be more due to the patient’s character and energy.

~- Rolando P(…institutions for life; learned to read…)

EL: A precocious child who had EL at 30 months.
Just after EL: He was immobile or hyperkinetic; he was sent to schools for the mentally defective, although many observers thought he was very bright underneath his immobility.
Admission: Admitted when he turned 18.
Pre L-Dopa: He spent 5 decades immobile and mostly speechless, although he would emerge a little bit from his state between 7 – 9 every evening; at such times he would often inveigh against what had happened to him and wish he were dead.
Onset of L-Dopa: After 3 to 4 weeks he began to move and talk, as well as to act in a libidinous manner. He became a bit manic and insomniac, after which his dosage was reduced. Various other symptoms occurred — tics, involuntary chewing, and development of bellicose and truculent attitudes. After this he reported that his eyes would be ‘caught’ by moving objects, and his grasp would perseverate.
Post L-Dopa: The patient’s L-Dopa dose was reduced, but his behavior still oscillated between extremes. While he did teach himself to read a bit during this period, most of his arousal seems unpleasant and frustrating; it is not clear to me if he was better off than before, or not. Whereas Sacks often mentions giving patients a choice about whether to continue L-Dopa or adjust the dose, he does not mention offering this patient that choice.
Other things that helped: —
Summary: Seems like the L-Dopa shifted the patient into a more aware / more aroused mode of life, but very little of it seemed pleasant to me.

…reading break…

++ Mirian H (…life in orphanage & hospital…)

EL: Orphaned from an early age, raised in an orphanage where she suffered abuse, until she contracted EL at 11. It lasted 6 months.
Just after EL: After EL, she had narcolepsy and sleekness for a couple of years, and then begin to develop other symptoms of Parkinsons; but she was exceptionally intelligent and managed to finish high school.
Admission: Admitted to hospital at 18 — never had a normal life outside.
Pre L-Dopa: Had increasing motor problems, but was able to walk. Various hypothalamic problems left her hirsute, obese, and hump-backed. She reported generalized pain, and depression and self-loathing, which for a while culminated in screaming fits. She also had oculogyric crises every Wednesday, though she appeared to be able to postpone them. She also had OCD and counted things or counted to particular targets, and when she reached her target her crisis would cease. Despite all this she was an omnivorous reader, and active in her ward and synagogue, until, in 1967, her anti-Parkinson’s medication was stopped, and she regressed into catatonia.
Onset of L-Dopa: After a couple of weeks she has become alert and cheerful and is taking an interest in her appearance, and is reading. She can talk and calculate with extreme rapidity. She has a tic, but is able to do most motor activities, including walking. She speaks with great fluency and wit.
Post L-Dopa: After four months more severe symptoms manifest themselves, including respiratory problems, oculogryia and delusions. Her L-Dopa was stopped at her request, and then re-started after she said she could manage her symptoms. She had several months of doing very well, but then new symptoms (tic;ing) emerged, and she requested another stop. And then she requested a resumption of the L-Dopa, and she was doing very well up through the completion of the book in 1972 (a couple of years).
Other things that helped: OCD-ish counting; seemed to have some control over symptoms
Summary: A success case for L-Dopa, although it was stopped and restarted each time; it appears that with considerable effort and intelligence she was able to eventually manage her symptoms.

~ ~ Lucy K (…toxic mother; awake for a few days…)

EL: No EL identified, although at 2 she had some sort of suspicious eye problem.
Just after EL: After about 4 years she appeared to develop behavioral problems (around 6), and then after her father died at 11 she began showing symptoms of Parkinsons including immobility, withdrawal. It sounds as if she had a very toxic relationship with her mother who neverthess continued to care for her.
Admission: She was admitted to Mt Carmel at 40 when she became wheelchair bound.
Pre L-Dopa: She was immobile and unresponsive except for brief violent periods of release when she verbally attacked those around her. Her mother continued to visit her every day and take the lead in her care.
Onset of L-Dopa: She awoke and seemed intoxicated for a few days; she was, however, clearly delusional. Sack’s had asked her to give him her hand — meaning it literally — and she interpreted it as a request to marry, and was infuriated when he explained that he had not meant that, and went back into her withdrawn state.
Post L-Dopa: After a week she was back in her immobile and speechless state — Sacks reports that her feelings seemed less violent… Two years later she died suddenly.
Other things that helped: —
Summary: It seems likely she had undiagnosed EL at 2, and developed Parkinson’s symptoms a few years later, which were accompanied by dysfunctional emotions and delusional reasoning, aided and abetted by her mother. L-Dopa woke her up for a day or so, but seems to have not really made a difference beyond that. I’d call this a failure, although it did not leave her appreciably worse off.

– – Margaret A (…disintegrated into sub-selves…)

EL: Developed EL at 15 which lasted for about a year.
Just after EL: Recovered completely but after about 3 years started showing complex Parkinsons’ symptoms such as tremors, impaired gait and balance, and weekly (Wednesday) oculogyric crises. Was able to work about 10 years, and was cared for at home by her mother for another couple of years.
Admission: Admitted to Mt Carmel in 1958 at the age of 50.
Pre L-Dopa: She was able to perform most activities of daily living, but had pretty severe mobility and emotional issues. She fell asleep every day between 5:00 and 6:30 pm. She could be activate by physical therapy (or sneezing), and could then move fairly fluidly for a while.
Onset of L-Dopa: After about 3 weeks she showed improvement, although she seemed a bit manic and was prone to overactivity and voracious drinking.
Post L-Dopa: The dose was reduced as the more negative effects became manifest, but if it was too much she subsided into a coma. The result, over the next three years, is that she is ‘awake’, but possessed by a host of crude, degenerate sub-selves. The only things that seemed to help were music and going out with her sister, who visited regularly, and during those visits she seemed quite normal.
Other things that helped: Music; when she went out with her sister she was almost normal
Summary: This is a case where the patient was made worse by L-Dopa — she “lost all possibility of a middle state.”

++ Miron V (…the happy cobbler…)

EL: No EL, but did have the flu in 1918 at the age of 10.
Just after EL: Was fine — worked as a Cobbler — for a couple of decades until, at 30, he showed the first symptoms of Parkinsons.
Admission: Admitted in 1955 at 47, and immediately experienced ‘admissions psychosis’ which manifested itself as bouts of rage and paranoia.
Pre L-Dopa: By 10 days after admission he had passed into a state of immobility and speechlessness, where he remained for a decade.
Onset of L-Dopa: He initially showed a remarkably positive response to L-Dopa, moving and speaking, and moments of joy punctuated his habitual suspicion and bitterness.
Post L-Dopa: After about two weeks he developed follow on symptoms of hyperactivity, punctuated with immobility, and began falling a lot. He also showed a decrease in his suspicion and increased interest in those around him. After a couple of years a therapist brought him materials and tools to do cobbling, and this had a huge impact on his condition and mood. After this, he was able to live a somewhat normal life within the constraints of the hospital.
Other things that helped: Being able to do his work as a Cobbler transformed his life
Summary: L-Dopa woke him up, but catapulted him into a new set of problems. However, providing him with the opportunity to return to cobbling was transformative. Sacks says he is one of the most positive examples of the success of L-Dopa…

++ Gertie C (…rapt mysticism; hallucinatory visitor…)

EL: No sign of EL.
Just after EL: Live a normal life until 38, after which she developed symptoms of Parkinsons. By 44 she was totally immobile and speechless, though her family cared for her at home for another 10 years.
Admission: She was admitted to El Carmel at 54
Pre L-Dopa: She was immobile and only able to speak a few years, but rather than being withdrawn appear to be rapt. She later reported what seems to me like a mystical contemplative state that was quite pleasant.
Onset of L-Dopa: She awoke and for a few weeks was almost normal and quite happy.
Post L-Dopa: After about a month she developed unfavorable side effects, including hallucinations. Reductions of L-Dopa returned her to her immobile state. After various adjustments she has achieved a state where she can be awake, albeit one in which she still has hallucinations which she has incorporated into her life.
Other things that helped: incorporated her hallucinations into her daily life
Summary: A success story, if a bit of a bizarre one, for L-Dopa.

~~ Martha N (…Easter psychosis…)

EL: No EL, but almost died from flu at 10 in 1918.
Just after EL: Normal until 21. She then developed severe tremors, and also sleep talking and walking. Unable to work but lived at home for 20 years and was able to golf and go to the store and do other daily activities.
Admission: Admitted in 1954, at 46, due to worsening of her symptoms after parents’ deaths in 1951.
Pre L-Dopa: Except for tremors and some rigidity she was able to function normally, including socializing with others, for 51 weeks of the year. The week of Easter she would go into a coma on good Friday, and awake on Easter day.
Onset of L-Dopa: Giving her L-Dopa initially decreased her tremors and eased her speech, but then after effects set on.
Post L-Dopa: She was put on and taken off L-Dopa five times, each time manifesting radically different effects. Eventually she was taken off it and reverted to more or less her original state.
Other things that helped: —
Summary: She seemed pretty functional in the hospital, and I wonder about the decision to introduce L-Dopa. It helped briefly, but gave her a lot of trouble in the longer run. I think she was fortunate to be able to discontinue it without ending up worse off.

++ Ida T (…Seal woman, ‘dead’ for 45 years…)

EL: No indication of EL, but when she was 18 — in 1921 — her husband died and she manifested very negative emotional and behavioral changes. Shortly thereafter she began to manifest symptoms of rigidity and immobility. All this happened quite rapidly.
Just after EL: —
Admission: At 21 she was somehow sent from Poland to America to get treatment. She became completely immobile during the journey, and was hospitalized in NY and was essentially immobile for 45 years.
Pre L-Dopa: She was immobile, spoke little, except occassionally given to outbursts. But nurses were devoted to her. It is interesting to note that she refused L-Dopa, but Sacks ended up giving it to her surreptitiously at the repeated urging of her nurses.
Onset of L-Dopa: It had a very rapid impact, waking her up and releasing a bit of pleasant affect, although by Sacks’ account she was totally self-centered and unaware of other people.
Post L-Dopa: Sacks alludes to a few complications from the use of L-Dopa, but overall it seems to have had very few and mild side effects.
Other things that helped: A plant given to her by Sacks; a kind physiotherapist; a relationship with her daughter.
Summary: Seems like kind of an awful life, but clearly L-Dopa lead to an improvement over “being dead for forty-five years.”

~ – ~ Frank G (…the robot…)

EL: Contracted EL at 13 and spent 9 months in a stupor,
Just after EL: Afterwards he had some ocular problems and was said to be ‘sort of strange.’ He was unable to continue school, treated as mentally defective, but was able to work in a factory for 20 years. He is described as being sort of ‘robot-like’). AT 35 he began to develop movement difficulties, and at 37 was discharged from his job, after which his life feel apart.
Admission: He was admitted to a mental hospital and transferred to Mt Carmel at 50.
Pre L-Dopa: He was physically able to look after himself, but had a sort of robot-like existence, and over the years his activities narrowed and he became withdrawn. He developed tics, some additional motor difficulties, and hallucinated, with occasional panic attacks.
Onset of L-Dopa: L-Dopa had no apparent effect for 3 months, but then he started developing tics. When Sacks proposed stopping L-Dopa he refused, and said the tics would stop, which they did in an hour.
Post L-Dopa: He was then in his reaction less state for six months, and then started being more active and libidinous, exposing himself to other patients, and assaulting them. When he was threatened with transfer to another institution, he erupted in rage, but then most of these behaviors disappeared, and he reverted to his robot-like state and died a year or so later.
Other things that helped: —
Summary: He didn’t have much of a life. L-Dopa woke him up a bit, but went on to produced negative side effects, and so it was discontinued and he reverted more or less to his prior state.

…reading break…

– – Maria G. (…Sicilian girl… had a terrible life)

EL: Not clear if she had EL but she had some dramatic sickness involving delirium and hyperactivity when she was 8. This was in `1927, which is a bit for EL, but she was on a small farm in Scily so perhaps the pandemic had not fully subsided there.
Post EL /1st Symptoms: After her illness she was restless and violent and troublesome. In her 12the year she stared to show symptoms of Parkinsonian immobility; she was kept in a back room and treated horribly for the next 15 years.
Admission: She was admitted to Mt Carmel in 1967 as her parents became to old to ‘care’ for her.
Pre L-Dopa State: She was profoundlyParkinsonian and catatonic, but was aware of those around her and would sometimes fly into rages
L-Dopa Awakening: She was stared on L-Dopa in 1969, and very quickly made a remarkable recovery.
Post L-Dopa Follow-on Effects: After about 3 weeks she began experience side effects of delusion and rage. Adjustments in her L-Dopa either had little effect or left her deeply catatonic. She deteriorated over the next couple of months and ended up far worse off than she had been before L-Dopa. Sacks describes her a disintegrating into a innumerable regressive sub-selves.
Other things that helped: There were times in the evening during which she was calmer, and she would work on basket weaving.
Summary: Profoundly messed up from 8 on with terrible parents; then was institutionalized. L-Dopa helped her for a short time, but left her far worse off than before.

– – Rachel I. (…Imediately fell apart on L-Dopa…)

EL: Had EL but it doesn’t say when, or what effects were
Post EL /1st Symptoms: <no information>
Admission: Not stated
Pre L-Dopa State: By 1964 she was completely immobilized, but was able to talk and showed intelligence and humor. Had attacks of pain/screaming, generally every other Sunday. Started showing deterioration of cognition in 1967, and decided to try L-Dopa which she had previously resisted.
L-Dopa Awakening: She went immediately into a horrible state of manic delusions and hallucinations. The L-Dopa was discontinued, but her state did not stop. After four weeks she fell into a coma, and when awake showed no intellectual functions. She died not long after.
Post L-Dopa Follow-on Effects: N/A
Other things that helped: —
Summary: She was possibly declining anyway, but the administration of L-Dopa proved immediately catastrophic.

~ + Aaron E. (…discharged but returned & fell apart…)

EL: No sign of EL — had ordinary Parkinsons.
Post EL /1st Symptoms: NS
Admission: Developed Parkinsons in 1962 at 56 and in 5 years had become a complete invalid.
Pre L-Dopa State: Spoke little; could not walk on his own; looked and felt like an invalid.
L-Dopa Awakening: L-Dopa had a positive effect but he hid it because he didn’t want to be sent home from the hospital. But the positive effects continued, and after a few months he went home and was well for about 3 months.
Post L-Dopa Follow-on Effects: But eventually follow-on effects occurred, involving chorea, alterations of mood, freezing, etc., and returned to Mt Carmel. Now he was hypersensitive to L-Dopa and even tiny amounts triggered various bad effects. He went on and off several times, but the last time he went on he had reasonably good effects, and has been able to get better than his pre L-Dopa state through the end of the book.
Other things that helped: —
Summary: L-Dopa helped him, then gave him multiple lines of terrible effects, but finally left him in a better state than before.

~ + George W. (…Laundry biz–perfect but on knife’s edge…)

EL: N/A
Post EL /1st Symptoms: N/A
Admission: N/A
Pre L-Dopa State: Stiffness on right side of body, overactivity on left. Could still do a full days work but things getting more difficult.
L-Dopa Awakening: Developed Parkinsons on his left side for a while, but that stopped and his right side problems went away. He was good for a while, and the developed hyperactivity, but that went away.
Post L-Dopa Follow-on Effects: When things are going smoothly he’s perfect; but if he is upset, or stressed, or someone mentions side effects, or he even thinks about side effects, his side effects turn on.
Other things that helped: —
Summary: L-Dopa helped him, but left him on a knife’s edge, and he finds the lack of predictability a big problem.

~ – ~ Cecil M. (…Functional Parkinsons… rejected tightrope…)

EL: Had EL at 15
Post EL /1st Symptoms: Completely recovered.
Admission: NA
Pre L-Dopa State: Parkinsonian imbalance, freezing, festination, tremor
L-Dopa Awakening: Felt great for a week or so
Post L-Dopa Follow-on Effects: Then developed lock-jaw and a return to and exacerbation of his normal Parkinson’s symptoms. He requested that L-Dopa be stopped, and returned to his previous state. He is able to deal with his symptoms and prefers their constancy to the knife’s edge of L-Dopa.
Other things that helped: Swimming
Summary: Prefers constancy of his Parkinson’s symptoms which he can manage, to variability produced by L-Dopa.

~ + ~ Leonard L. (…Erudite but catonic…)

EL: ?? Born in 1920.
Post EL /1st Symptoms: Withdrawn from a very early age; at 15 some motor effects to right hand. Precocious and entered Harvard… did well, but his symptoms increased and by 27 he was unable to continue studies on his PhD.
Admission: 1930
Pre L-Dopa State: He was completely speechless and motionless, except for movement in right hand that allowed him to use letter board. But he read constantly, acted as the hospital librarian, and was exceptionally thoughtful and articulate regardless of his disability. HIs mother was devoted and attended him every day.
L-Dopa Awakening: He had a very positive awakening on L-Dopa — he seemed restored to normality and was full of joy.
Post L-Dopa Follow-on Effects: After about 6 weeks he begin to show concerning effects: initial extravagance ballooned into delusions of grandeur and he became violent and full of lust, and developed tics and other acerbated movement problems. He decided to write an autobiography, and while writing — which he did for 12-15 hours a day — he was free of his symptoms. He also hallucinated, and though he was originally able to control them by projecting them on certain surfaces, he lost control over time. Finally, he ended up oscillating between arousal and depressed functionality. L-Dopa was stopped, and he reverted to his original state, and finds the preferable to the oscillations.
Other things that helped: writing
Summary: L-Dopa worked well for a few months, freeing him from complete catatonia, but then follow-on effects became increasingly dire and he went into rapid oscillations and decided to stop taking the drugs.

Perspectives

Sacks argues that the terrors of suffering, sickness and death; the sense of awakening, recovery and rebirth; and the experience of health and well-being are the most elemental experiences humans know.
He also suggests that we have a degree of control: that we can allow and even collude with our own diseases. And that we resist diseases with resources that are inborn or acquired.
Sacks seems to be in search of a vocabulary to discuss these maladies in a way that is more holistic than the narrow, symptom-forward language of modern neurology. But his poetic and inconsistent language leave me in doubt that he will succeed.

Such difficulties in communication, clearly, can arise from the very strangeness, the extraordinary quality, of patients’ problems, their experience; but an equal, if not greater, difficulty may be created by physicians themselves who, in effect, decline to listen to their patients, to treat them as equals, and who are prone to adopt – from force of habit, or from a less excusable sense of professional apartness and superiority – an approach and language which effectively prevent any real communication between themselves and their patients.
Oliver Sacks, Awakenings, p. 225 (footnote 104)

Sacks is not dismissing the mechanical/technological/neutral language around medicine, but rather arguing that it needs to complemented with a more humanistic, all-embracing language that is anchored in everyday lived-life.
Sacks, it appears, wishes to use Wittgenstein’s distinction between “pointing language” and “evocative language in Philosophical Investigations.
Sacks refers to Freud’s case histories, and Luria’s books The Mind of a Mnemonist and The Man with a Shattered World.
Reference to Faraday’s History of a Candle.

This sense of worlds upon worlds, of a landscape continually extending, reaching beyond my sight or imagination, is one which has always been with me, since I first encountered my post-encephalitic patients in 1966, and first gave them L-DOPA in 1969. It is a very mixed landscape, partly familiar, partly uncanny, with sunlit uplands, bottomless chasms, volcanoes, geysers, meadows, marshes; something like Yellowstone – archaic, prehuman, almost prehistoric, with a sense of vast forces simmering all round one. Freud once spoke of neurosis as akin to a prehistoric, Jurassic landscape, and this image is still truer of post-encephalitic disease, which seems to conduct one to the dark heart of being.
– Oliver Sacks, Awakenings, p. 231

I think Sacks’ language begins with “Awakening,” “Tribulation,” and “Accommodation.” …I’m skeptical that this is enough, but we’ll see what he does with it. xxx

…reading break

Awakening

~90% of true Parkinson patients show some sort of awakening with L-Dopa. It may last no more than a few days, but often persists for a couple of weeks. Awakening seems prompter and more intense in post-Encephalitic patients. “All manner of disorders, which are not usually taken to have a dopamine-substrate or to be amenable to L-Dopa, may vanish as the Parkinsonism vanishes.“
Awakening is usually experienced as a relief from internal pressure, or a release or detumescence.
Sacks makes comments that do not seem to follow, to the extent that the sudden release from all symptoms shows that the disease “is not a thing-in-itself, but parasitic on health and life and reality.” ???
Sacks remarks on how amazing it is that a person can return to seemingly full health after decades of Parkinsonian catonia and withdrawal.

Tribulation

While almost every patient returns to health, in one way or another almost every patient is plunged into problems and troubles. Sacks remarks that while it is difficult to generalize, patients who were in the greatest trouble originally tend to get into the greatest trouble on L-Dopa.
Sacks is against the term side effects. But while I have no objection to jettisoning it, he doesn’t offer an alternative, and makes what I see as some pretty spurious objections (e.g., the the use of the term “prevents any study of this.”
Sacks argues that medicine needs an anatomy of wretchedness, and epistemology of disease. I’m not against this, but it is not clear to me how it would help; nor does Sack seem to offer anything, in spite of extensive experience with L-Dopa’s tribulations.
It is interesting, as Sacks says, that often the first symptom of the beginning of tribulations is the sense that something is going wrong.
The tribulations often involve haste, exaggeration, avidity, and excesses, of movement or of temperament. Sacks talks of this as a sort of gap between supply and demand, which the patient continually attempts to fill. I’m not sure about this, and not sure about the value offered.
For every patient maintained on L-Dopa, his tolerance becomes less and less, but his need for it becomes more and more. Not sure about what is meant by the increasing “need for it,” in the presence of the ‘tribulations’ it produces.
Sacks talks about neuronal groups becoming more and more sensitized, with more and more recruited, and the new behaviors become fixed as part of a new behavioral regime. While I think that talk of neuronal group stimulation and recruitment is an engaging analogy, I don’t think it is more than that.
At some point, the escalation of excess peaks, and the patient crashes, often very suddenly and dramatically. But this is not just exhaustion, but a transition into new states.
Sacks comments that the patients’ reactions are imbued with a personal quality; he seems to think this is remarkable, but to me it seems just what one would expect: that mental or cognitive states and transitions reflect the mind that is undergoing them.

Accomodation

Sacks speaks of “deep strengths and reserves” and “common sense,” and “care” and “vigilance” as ways of accommodating to the tribulations. This does not really strike me as very useful.
Sacks notes that patient’s tribulations are extremely sensitive to stress and illness; he comments that he has a number of patients who are fine if they sleep 12 hours a day, but do badly if they get any less sleep.
Other things that help patients accommodate:
meaningful tasks (the cobbler)
loving relationships
music
techniques like “auto command,” “pacing,” and “external command”
Sacks also notes that the design of the environment — curves rather than corners, for example, can keep patients from getting ‘hung up’ in corridors.

…reading break

Back Matter

Epilogue

xxx