Movement and Sleep in Parkinsonians The idea that our bodies and minds are totally separate in their functioning and existence is a rather simplistic and erroneous view. The two are connected in several uncanny ways and influence the functioning of each other very profoundly. The object of this paper’s study is the book Awakenings by Oliver Sacks. We will concern ourselves with the way the biological and psychological processes of movement which correlate with Parkinson’s general symptoms. Our particular focus will be on the issues pertaining to Encephalitis Lethargica (sleep pattern disturbances) and the Parkinsonian (motion and rigidity) connection as it relates directly to the work of Sack’s book on Parkinsonian symptomatology in connection with Encephalitis Lethargica patients. When Encephalitis Lethargica first made its appearance in 1916-1917 it was not recognized as such because the symptoms were so very different in type and degree that it was not possible to generalize them as belonging to one condition; in fact, it seemed like several new diseases had come about at one time (Sacks, p. 12, 1991). Although there were smaller sporadic bursts of this sickness prior to 1916, there was never so much wide spread incidence and deaths of one third of patients suffering from sleeping sickness related complications (Sacks, 1991). The patients typically suffered by way of becoming fixed in a listless awareness, though they were conscious they could not act based on this consciousness, and were made statuesque (Sacks, p. 14, 1991). This immobility was caused by a negative influence which created an absolute resistance to the will of the patient, it was found that in phases Encephalitic patients could speak in a circular and restricted way; alongside this phase, involuntary movements of a variety of kinds were also observed (Sacks, p. 16, 1991). That the condition of Post-Encephalitic patients was not entirely physiological was established by the invariance of symptoms across cases with and without lesions on certain areas of the brain, and it was understood that there were other reasons which played part too (Sacks, 1991). Sacks also focuses on the environment of the hospital (Mount Carmel’s) as being of importance in the way it enhances or deteriorates the patient’s reactions to treatment procedures; often “…giving them a sense of being people, and not condemned prisoners in a vast institution…” could play a part in improving the patient’s overall health (Sacks, p. 26, 1991). Mazurkiewicz’s theory of psychophysiology holds that feelings are independent of thought processes and that they help interpret the way in which a person responds to objective impressions created by his interaction with stimulus (Kokoszka, 2007). In Kokoszka’s account of Mazurkiewicz’s “scale of dissolution” the symptomatology associated with illness in general marks a patient’s regressive and inadvertent behavior as ‘a shallow neurotic dissolution which does not disturb deeper levels of personality…” but this does erode the loss of control on actions such that excessive excitement cannot be suppressed and actions are made inconsistent (Kokoszka, p. 17, 2007). This is peculiarly interesting because patients of Post Encephalitic Parkinson in Sack’s book represent a wide spectrum of inadvertent and uncontrolled action, with a low ability of control while maintaining whole personalities. Our first case for analysis, related to movement, is that of Leonard L[1]., in Awakenings, who had lost all mobility due to his Parkinson’s condition, and could make very limited movement with one hand making him dependent on his mother for all basic things (Sacks, p. 203, 1991). He had the facility to spell out small messages using which he could communicate with others, but for his handicap he was profoundly intelligent and quick witted (Sacks, 1991). Sack’s understanding of the nature of restriction of movement that comes from Parkinson’s comes from Leonard’s ability at describing these in forceful and vivid metaphors; at one time he said it was like “the goad and the halter” which impelled him to action and then stopped him back (Sacks, p. 204, 1991). The main merit of the theory of psychophysiology as developed by Mazurkiewicz is that it can account for the overall sphere of human activity to be contained within the neurological and psychical thus allowing psychiatric practitioners to take active part in the rehabilitation of physiologically challenged patients (Kokoszka, 2007). Sack’s would agree that that humane treatment encompasses the catering to natural instincts of patients as human beings, and that within the organization of hospitals this should be a point of orientation while determining policies[2]. The distinction between ballistic and corrected feedback of movements by muscles is a vital capability which allows convenient motions through acts which require more or less accuracy and skill according to feed back from the senses (Kalat, p. 231, 2009). The motor programs which facilitate fixed movements and actions such that they can be done without thought (Kalat, 2009), but for a patient with Parkinson’s like Leonard L. this is not the case and being 30 years of age he was still infantilized and depended on his mother to change or bathe him (Sacks, 1991). But after his initial awakening on L-Dopa when he was able to move freely and express his inner life, he suddenly relapsed into over activity in the sense of losing control over corrected feedback movements (Sacks, 1991). This was also the time when his feelings of relief and happiness had reached a pathological pitch; he was grandiose and over-excitable without control and curb on his feelings (Sacks, p. 210, 1991). Thus, the connection between mind states and motor activity seem to be interacting at the sites in the brain where ballistic and corrected movements are coordinated with sensory stimulus. Parkinson’s disease is a disease of the basal ganglia, more specifically the region called corpus “…striatum” which “receives excitatory input from several areas of the cerebral cortex as well as inhibitory and excitatory input from the dopaminergic cells of the substantia nigra pars compacta (SNc)” (Hauser, 2011). The deficiency of dopamine is one of the reasons of this disease (Hauser, 2011), however it cannot account for all the symptoms created in terms of cognitive functioning by the Parkinson disease (Forgacs & Bodis-Wollner, 2004). Troster et al were able to establish that depression induced impairment of the brain organs connected with conceptualization and visuo-constructive tasks, thus showing the depression increased cognitive damage in Parkinson patients (Troster et al, 1995). Leonard’s condition too distorted his sense of space and location, perhaps because of the depressive/ repressive atmosphere of the hospital which could not accommodate his sexual frustrations, and he took on tics, palilalia and other involuntary motions with a sexual nature (Sacks, 1991). Sack’s recounts how his indiscriminating, indeed helpless sexual behavior caused him to be put into a punishment cell and deprived of company (Sacks, p. 216, 1991); thus given the situations which are to be maintained in the organization of a hospital make it difficult if not impossible to accommodate the human element of the patients. Lundkvist, Kristensson and Bentivoglio ( 2004) suggest that sleeping sickness is caused by a causative agent, a parasite called Trypanosoma brucei which affect the circumventrical brain organs leading to inflammation of hypothalamic structures, these areas of the brain affect the circadian rhythms which regulate sleep patterns in human beings (Lundkvist et al., 2004). Thus we see that a physiological agent introduces lesions in the brain which goes on to constitute the physical symptomatology of Encephalitic patients. The interaction between circadian rhythms and homeostatic processes which regulate sleep patters broadly may be affected by more than mere lesions in the brain as has been seen in research with mice and monkeys who showed that total sleep was unchanged in amount (Lundkvist et al., 2004). A disturbance in sleep and wakefulness patter may be brought about by the action of parasites which weaken the “flip-flop” function of the mutually inhibiting switch between brain mechanisms (Lundkvist et al, 2004). The switch between the homeostatic processes and circadian rhythms is dependent on the secretion of dopamine which mediates between the two interfaces and thus control sleep-patterns (Manglapus et al, 1999; Pozdeyev et al 2008). Thus in animals (quails and mice) it has been established that dopamine based interactions between circadian rhythms can change the sleeping pattern[3], perhaps such treatment for Parkinsonian patients too result in change of patterns of sleep. In any case Post Encephalitic patients in Awakenings have had a history of pathological sleep conditions (Sacks, p. 39, 1991). We will now consider the case of Frances D. because it is associated with our analysis of movement in Parkinson patients in Awakenings[4]. Beginning with insomnia and respiratory crises which were infrequent Frances started experiencing staring attacks and rigidity, or frozenness like she was entranced (Sacks, 1991). Post treatment with L-Dopa Frances experienced along with the stabilization of her motor rigidity some exacerbation of hypersensitivity, insomnia during attacks and an odd combination of opposing desires (sacks, 1991). Insomnia among Parkinson patients may be due to motor disability, depression or pain, additionally levodopa treatment may induce hallucinations (Hauser, 2004). The incidence of hallucinations in Parkinsonian patients generally causes more daytime sleepiness, as the incidence of REM sleep is reported, and hallucinators also reported daytime hallucinations (Arnulf et al, 1999). Frances too suffered from attacks which kept her awake, the intensity of the discomfort in breathing-breath holding which resulted sometimes in the increase of blood pressure to as high as 170/ 100, during treatment by L-dopa (Sacks, p. 47, 1991). Her symptoms however showed great intensification around specific dynamics other than psycho-physiological states, moods and circumstances: this was later confirmed as Dr. Sack’s presence on the scene which aggravated or brought on the symptoms (Sacks, p. 49, 1991). She also had monstrous dreams, or hallucinations which disturbed her mental state and caused her to sleep less soundly; in due course her occasional rigidity could be managed by the use of music which helped her break free from the trance (sacks, 1991). She kept a diary which was filled with the predicament of being a prisoner in a total institution which felt like being reduced to a child, but on the whole she is fit for a good part of the year and her attacks are less frequent and can be managed (Sacks, p. 64, 1991). Only during attacks her sleep was her sleep disturbed significantly enough for her to be awake at night, and groggy in the day (Sacks, 1991). Her almost normal situation depended on her mental adaptation to the situations he was put into once she was put up into the institution for good. But this adjustment is a matter of temperament, which is not the same with everyone, and because the effects of L-dopa on her were not totally unmanageable within the organizational means of the hospital (Sacks, 1991). Dreams with significant stimulating content and REM states are typical of Parkinson’s patients, though less frequently found in younger people, and it results in tiredness which needs to be treated (Lee Chiong ed., p. 163). For Frances this treatment worked out fine under the aegis of Dr. Sacks but it could not be the case for all patients in a terminal institution. This may be because of a variety of reasons like the etiology of the particular patient, the response to medication and also to a large extent the environment of such an institution. While it is understandable that Mount Carmel Hospital New York could not accommodate the sexual needs of Leonard L., but the general civility and cordiality accorded to all humans is the prerogative of all patients. Faced with their sickness and slim chances of complete recovery it becomes the foremost ethical concern to remove the unnecessary troubles from their life. Dr. Sacks often speaks in the book about how a little more social experience, excursions into the city for movies and other such experiences helped these patients immensely (1991). I agree that this is a necessary step, as also is the need of complete support from the patient’s family, without pathological attention between members like in the case of Leonard’s mother who encouraged his sexual suggestions underhand.
The crux of the book is the work Sacks began in the mid-1960s with dozens of post-encephalitic patients at Bronx's Beth Abraham hospital, then called the Bronx Home for Incurables and disguised here as Mount Carmel. These patients were infected in 1918 by the encephalitis lethargica virus, or sleepy sickness. (Not to be confused with the worldwide influenza pandemic of that same year.) Those who survived were able afterwards to lead normal lives for years and sometimes decades until they were stricken with Parkinson's disease-like symptoms: locked and rigid postures that turned them into living statuary (akinesia), hurrying gait (festination), frozen skewed gaze (oculogyyric crises), and so on. These patients did not have Parkinson's disease proper, but because the encephalitis reduced the neurotransmitter dopamine in the part of their brain known as the substantia nigra they experienced identical, if somewhat more severe symptoms than actual Parkinson's patients. They were to become know as post-encephalitics.In 1969 L-DOPA's cost came down sufficiently that Dr. Sacks began to prescribe it for his post-encephalitic patients. The results were at once miraculous and disastrous. In a matter of weeks, sometimes overnight, Sacks's patients were "awakened" from what for many had been decades of immobility, incommunicability, and dependence on high levels of nursing care. Suddenly these frozen figures were walking and talking, their personalities, in hiatus for so long, perfectly preserved. Dr. Sacks reviews the cases here of 20 such patients, from their often sudden awakening to the onset and growing severity of side effects. Awakenings is in the final analysis a tragedy. Few of Sacks patients could tolerate the long term effects of L-DOPA. Not a few regretted ever being treated with it. For a handful it provided a vastly improved quality of life. They became social again, needed far less nursing care, but the effects of the drug were highly unstable. In an appendix added to the 1990 edition, Sacks and a colleague analyze patient responses to L-DOPA using the then emerging discipline of chaos theory. This appears only in the 1990 edition since the discipline did not exist when Sacks and his patients began their trials of the levodopa in '69. Dr. Sacks never met a footnote he didn't love. The book is chockful of them. Those too long to fit alongside the text are included as appendices. Ninety-five percent of them seem to me indispensable. Sacks is a great thinker of immense erudition who possesses a highly readable prose style. The primary text provides straightforward exposition, but when read in conjunction with the footnotes--where much of the real meat of the book resides--it can at times take on an almost fiction-like discursiveness.Of Sacks's dozen or so books, I've read all but three. Awakenings is his magnum opus, his manifesto and policy declaration. In it he lays out his positions on the then current neurology of the day (Awakenings was first published in 1973) which he lambastes as coldly empirical and lacking a complementary metaphysical component. In America, and no doubt much of the West, these were the last years of the Physician as God. There was little public knowledge of medicine then, unlike today, and the doctor's role in a crisis was usually unquestioned. Today second opinions are sought with regularity, "integrative" approaches to healing more readily embraced, and there is a vast industry based on purveying medical knowledge to the general public. You can see this great change perhaps best in the way pharmaceutical companies now advertise directly to the public in a way they never did during the Awakenings period. Sacks is here an articulate proponent for a more human, less coldly analytical medicine, and his endorsement for such an approach, which includes close interpersonal relationships with patients, is a clarion call. Fascinating, meticulous, and highly recommended.One appendix is devoted to the many dramatizations of Awakenings on stage and screen. There's Harold Pinter's one-act play "A Kind of Alaska," an original documentary film, and the feature film, which retained Sacks as a consultant. I found his descriptions here of DeNiro preparing for his role as Leonard L. fascinating.
What do You think about Awakenings (1999)?
(This analysis also appears on my blog, Profound Reading.)What most struck me about reading Awakenings was how little I knew about Parkinsonism. I thought it was just a shaking disease, a “fact” I “learned” from the two most famous people with Parkinson’s, Muhammad Ali and Michael J. Fox.In truth Parkinson’s is so much more; it’s probably among the most variable, elusive disorders known to man. Common symptoms include rigidity, catatonia, masking (expressionless face, voice, or posture), blocking, sleep disorders, and much more. Clinically called akinesia, but more expressively described by Sacks:There are many different forms of akinesia, but the form which is exactly antithetical to hurry or pulsion is one of active retardation or resistance which impedes movement, speech, and even thought, and may arrest it completely. Patients so affected find that as soon as they ‘will’ or intend or attempt a movement, a ‘counter-will’ or ‘resistance’ rises up to meet them. They find themselves embattled, and even immobilized, in a form of psychological conflict — force against counter-force, will against counter-will, command against countermand.However, this is only one side of Parkinsonism, as the quote above hints at. The “hurry or pulsion” (clinically akathisia) is actually the first quality of Parkinsonism described in the 1800s. Hurry is also called in the literature festination, an adroit concept that Sacks calls “perhaps the most characteristic feature of Parkinsonism.”Festination consists of an acceleration (and with this, an abbreviation) of steps, movements, words, or even thoughts — it conveys a sense of impatience, impetuosity, and alacrity, as if the patient were very pressed for time; and in some patients it goes along with a feeling of urgency and impatience, although others, as it were, find themselves hurried against their will.Thus it seems to me that the major characteristic of Parkinsonism is a struggle with an inner force that is not one’s own, that alternately urges activity or confounds it, with little in-between (“in-between” being a state of control — the state we think of as normal). It’s almost impossible to imagine what this must be like. Sacks is an extremely empathetic physician and writer, and he takes pains to try to describe what it’s like to have Parkinson’s. However just as often, its his patients themselves who provide the most eloquent metaphors (for metaphor is the only vehicle we really have for understanding this).[It is] like being stuck on an enormous planet. I seemed to weigh tons, I was crushed, I couldn’t move. — Helen K.I think of a map; then a map of that map; then a map of that map of that map… Worlds within worlds within worlds within worlds… Once I get going I can’t possibly stop. It’s like being caught between mirrors, or echoes, or something. Or being caught on a merry-go-round which won’t come to a stop. — Rose R.Sacks’s patients, whose case histories he recounts in Awakenings, are a special group of Parkinsonian patients called post-encephalitics. They are the survivors of the great sleeping-sickness epidemic of 1916-27, which I’d never heard of before. (Mencken: “The epidemic is seldom mentioned, and most Americans have apparently forgotten it. This is not surprising. The human mind always tries to expunge the intolerable from memory, just as it tries to conceal it while current.”)The sleeping-sickness, actually a viral disease called encephalitis lethargica, struck no two patients in exactly the same way — this baffled the medical community. Many sufferers slipped in to irreversible comas, while others became so aroused that they died of insomnia. Those who didn’t die tended to fall gradually into a deep Parkinsonism, especially of the “frozen” variety, and had to be institutionalized. Sacks epitomizes their dreadful state with a quote from Donne: “As Sicknes is the greatest misery, so the greatest misery of sicknes, is solitude… Solitude is a torment which is not threatened in hell itselfe.”I ceased to have any moods. I ceased to care about anything. Nothing moved me — not even the death of my parents. I forgot what it felt like to be happy or unhappy. Was it good or bad? It was neither. It was nothing. — Magda B.This is when Dr. Sacks appears. In 1966 he arrived at a hospital in New York, where he oversaw a ward of about 80 post-encephalitics. He soon learned about a new so-called “miracle drug” called L-DOPA, which promised to reverse the effects of Parkinsonism. After putting it off for two years, he began starting his patients on it in 1969.L-DOPA’s effects on the post-encephalitic patients were instant and incredible; it generated the titular “awakenings” that have become almost famous, much more famous than what really happened. In actuality the awakenings were short-lived, and patients soon reacted to the drug in all sorts of bizarre and different ways, with the common thread that each saw a resurgence and even intensification of Parkinsonism. Many had to stop taking L-DOPA, after which they became even more confined than they’d been pre-DOPA. I was reminded of Charlie Gordon’s fate in Flowers for Algernon: was it worth it to experience the highest of highs, only to sink back to the depths below, or was it better to have gone through none of it at all?Sacks takes us through the case histories of a selection of these patients, and he shows us how they progress through three stages of L-DOPA. We experience their explosive reactions to the drug (“awakenings”), their “tribulations” with it after the adverse reactions appear, and for some, “accommodations” — these patients managed to achieve a homeostatis on L-DOPA that gave them a somewhat-normal life again.For the latter, these immensely strong individuals, the journey from encephalitis through L-DOPA strikes me as a characteristic example of Joseph Campbell’s hero’s journey — only for them, the period of wandering in the wilderness lasted decades. Alternatively, the three-stage sequence of response to the drug could be its own, highly-compressed example. The post-encephalitic Parkinsonian hears the siren call of L-DOPA, which calls her forth into an uncharted space, where after an initial elation, she endures the harshest tests of her will and character, to ultimately persevere and return to the sphere of Parkinsonism, eternally wise and unbreakable.Sacks reaches his greatest heights when discussing what the existence of Parkinsonism (and disease generally) means for our conceptions of life and “being-in-the-world.” Reading him made me grateful for my capability to move in and manipulate my own space — so easy to take for granted.The terrors of suffering, sickness, and death, of losing ourselves and losing the world, are the most elemental and intense we know; and so too are our dreams of recovery and rebirth, of being wonderfully restored to ourselves and the world.…Common to all worlds of disease is the sense of pressure, coercion, and force; the loss of real spaciousness and freedom and ease; the loss of poise, of infinite readiness, and the contractions, contortions, and postures of illness: the development of pathological rigidity and insistence.…Health is infinite and expansive in mode, and reaches out to be filled with the fullness of the world; whereas disease is finite and reductive in mode, and endeavors to reduce the world to itself.But what I gained most from Awakenings was learning about the greatest gift one can give to a person with Parkinson’s: companionship. It is togetherness that frees them from their inner constraints, so they may move freely again. Sacks describes patients who are rigid and unable to walk, until they receive the slightest touch — this seems to revive them, recall them to the world, and impel them to get up and go. Patients who normally struggle to walk without festinating can swagger gracefully down the corridors if they are walking with someone.I can do nothing alone. I can do anything with — with music or people to help me. I cannot initiate, but I can fully share. You “normals,” you are full of “go,” and when you are with me I can partake of all this. The moment you go away I am nothing again. — Edith T.When you walk with me, I feel in myself your own power of walking. I partake of the power and freedom you have. I share your walking powers, your perceptions, your feelings, your existence. Without even knowing it, you make me a great gift. — Edith T.Feeling the fullness of the presence of the world depends on feeling the fullness of another person, as a person; reality is given to us by the reality of people; reality is taken from us by the unreality of un-people; our sense of reality, of trust, of security, is critically dependent on human relation.How profound, how amazing it is to be “full of ‘go.'” This is a lesson that applies to all aspects of life: if you have something, some quality or flair, that others don’t, do your best to use it and treasure it and share it while you can. Make connections. Envelop yourself in fullness and reality.
—Aaron Wolfson
Brilliant, heart-breaking and hopeful all at once. This is more than just the case studies of those post-encephalitic Parkinsonian patients Dr. Sacks treated in the 60s with the new miracle drug L-Dopa. It gives a renewed optimism to those who work with any type of patient in the potential for recovery by realizing the patient is much more than just the physiological aspect of his body. "One sees that beautiful and ultimate metaphysical truth, which has been stated by poets and physicians and metaphysicians in all ages- by Leibniz and Donne and Dante and Freud: that Eros is the oldest and strongest if the gods; that Love is the alpha and omega of being; and that the work of healing, of rendering whole, is, first and last, the business of Love."
—Amy Gaither
More engrossing than the fact that Dr. Oliver Sacks' 'extinct volcanoes' (post-encephalitic patients) 'awoke' after having received L-Dopa are the reports of how these patients coped with their individual "eruptions." Despite having their 'higher faculties' (intelligence, judgment, humor) undisturbed by their crippling illnesses, most patients emerged gloriously from years of 'Sleeping Sickness' only to relapse - forcing either a troublesome accommodation to 'side effects' or a complete pre-dopa reversion. Worse yet was the inevitable addiction patients suffered to L-Dopa, despite Sacks' efforts to 'titrate' their medications and 'balance' their hyperbolic states. Though repetitive in their lessons, the book's numerous prologues and epilogues provide sufficient background on Parkinson's Disease, the 'Sleeping Sickness', Western medicine, and the patients' fates to round out the story.
—Simon
