Scientific Contribution Being a Parkinson's patient ... - Springer Link

Medicine, Health Care and Philosophy 7: 289–301, 2004. © 2004 Kluwer Academic Publishers. Printed in the Netherlands.

Scientific Contribution Being a Parkinson’s patient: Immobile and unpredictably whimsical Literature and existential analysis Harry Van Der Bruggen and Guy Widdershoven University Maastricht, Department of Nursing Sciences, Post Box 616, 6200 MD Maastricht, The Netherlands (Phone: +31.43.388.1562 (direct) or .1544 (secretary); Fax: +31.43.388.4162; E-mail: [email protected])

Abstract. What is characteristic of being a Parkinson’s patient? This article intends to answer this question by means of an analysis of novels about people with Parkinson’s disease, personal accounts, and scientific publications. The texts were analyzed from an existential-phenomenological perspective, using an adapted version of the existential analysis. Being a Parkinson’s patient is apparently characterized by an existential paradox: life appears simultaneously immobile and unpredictably whimsical. This may manifest itself in the person’s corporeality, in his being-in-time and in-space, in his relating to things and events, his life-world, and in his being-together-withothers as an individual. Finally, some specific characteristics of being a Parkinson’s patient are described that may be relevant for purposes of adequate care, as is to be specified by further research. Key words: existential analysis, literature, Parkinson’s disease, personal accounts, phenomenology Introduction: Being a Parkinson’s patient It is generally estimated that in our western society 1,2 to 1,7 per 1000 persons suffer from Parkinson’s disease (Van Manen, 1994). Parkinson’s disease is a progressive neurological illness which mainly affects movement and speech, severely deteriorating in five phases successively (Hoehn and Yahr, 1967). The patient’s physical changes can, indeed, be described and explicated with respect to a neurological disorder. However, such a mechanistic description, based on biomedical disorders, captures little, if anything, of patients’ lived experiences, neither of the particular mode of being that is being a Parkinson’s patient. Better knowledge of the nature of living with Parkinson’s disease might contribute to giving adequate health care to the numerous Parkinson patients in our western society. The question to be answered in this paper is: What does it mean to be a Parkinson’s patient? What is characteristic of being a Parkinson’s patient?

Methodology: An existential phenomenological approach In this research, being ill is approached as a way of ‘being’, of existing, as it is studied by the existential phenomenology. Existentialism since Kierkegaard focuses on human existence, emphasizing the human

condition towards God, towards man himself and towards fellow-men. Philosophers after Kierkegaard, like Jaspers, Heidegger, Sartre, De Beauvoir, Bataille, Camus, and many others have elaborated thoroughly divers aspects or dimensions of the human condition (Wahl, 1965). Phenomenology, as initiated by Brentano and particularly Husserl, has been developed as a philosophical method, using several kinds of reduction, to describe that “what shows itself” (phainomai = I appear; legoo = I speak). Philosophers after Husserl, like Merleau-Ponty and philosophers of the School of Louvain, and others, have elaborated “the” phenomenological method. But others, inspiring themselves on existentialism, as those mentioned up here, have made use of phenomenological methods. Finally – in fact since Heidegger, according to Luijpen (1960, p. 36) – there is a straight interconnection between existential philosophy and phenomenology, in which both philosophical orientations are fertilizing each other, and that is covered by the name existential phenomenology. In the tradition of existential phenomenology existing is understood as standing oneself, or standing (sistere) out toward the things of the world – with the prefix ex- indicating an excentric ‘movement’, from the I-subject toward the world. ‘Being’ is being-atthe-world. Existential phenomenology shows that the human being is-at-the-world due to and through the body (‘par et à travers mon corps’, Merleau-Ponty, 1945, p. 97). I am my body, but in certain circum-

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H ARRY VAN D ER B RUGGEN AND G UY W IDDERSHOVEN

stances I also have my body. The body constitutes time and space (Id., pp. 101 ff., 164 ff., 277 ff.). Due to the body I am now and here. In the time and space related to myself, things (objects, events, matters of life) possess their own meaning. The existing subject is ultimately oriented to the ‘life-world’, the world, in which he meets the other. The human being is ultimately defined as being-together-with: ‘sein ist mitsein’ (Heidegger, 1927), ‘être est être-avec’ (Sartre, 1943). Through the movement which is ek-sistere, the subject-pole, the existing subject, manifests itself. Although these elements, which are distinguished in the human being (body – space – time – things – the world – the other –, and to a certain extent ‘I’ as well) more or less follow the movement of existing, i.e., from the I-subject to the world and the other, they are in fact not given successively. They are ‘gleichursprünglich’ (Heidegger), they can be isolated in the analysis, but usually appear to be linked. For that reason the image of a ‘chain’ is used: the existential chain (Van Der Bruggen, 1977, 1987). The distinguished elements mentioned above represent the different ‘links’ of this ‘chain.’ Being-ill can be regarded as a specific way of being (existing), and being a Parkinson’s patient is in this context studied as a specific way of being ill. In order to understand being ill, one can analyze it as one analyzes and describes being, i.e., by a detailed description of the individual links of the existential chain. Employing this method of ‘existential analysis’, we will begin by describing how, by being a Parkinson’s patient, the sick person is at-the-world due to and through the afflicted body; this is followed by how this body constitutes space and time; how the patient relates to things; the life-world of the Parkinson’s patient; and, finally, how the patient’s being-together-with the other is given shape, also for the I-subject. ‘Existential analysis’ is a term that covers different meanings in distinct philosophers, like Heidegger (1927), Binswanger (1958), Merleau-Ponty (1943, cf. Widdershoven, 1987), and Sartre (1952), varying from philosophical, ontological methods to psychoanalytic, clinical methods. Here the term is understood as a descriptive phenomenological method, as it has been practiced in nursing science in the last decades (Van Der Bruggen, 1977, 1988, 1989, 1999). Thus the research question was specified as: What is characteristic of being a Parkinson’s patient, taking into account the various aspects, the links in the existential chain, that are distinguishing factors in existence?

Patients’ data: Using belles-lettres It may be assumed that personal accounts of those suffering from a disease and what novelists say about being ill contribute to a better understanding of patients. Artists are thought to have a different, more in-depth understanding of fundamental things of life, such as being ill, recovering, or dying. Also, they are thought to phrase this understanding in a better, more gripping, more imaginative way than those working in healthcare generally do. Doctors and nurses therefore pay tribute to great authors and put into practice the exhortation ascribed to Freud: ‘Let us listen to the poets again’. The objective of this research is to obtain insight in what is characteristic of being ill, in particular with Parkinson’s disease, by careful reading of novels about Parkinson’s patients. The analysis is based on four novels. Henri Van Daelen wrote Ik was een meisje met grote ogen en een strik (I was a girl with big eyes and a ribbon, 1990), the story of an elderly Parkinson’s patient, told from her own point of view, written over a period when she is put on different medication. The story conveys her confused perception of the world around her, in which present and past become intertwined. In Een grote blauwe cirkel (A big blue circle, 1994), Paula Loeckx tells the story of Marcus Holten, a successful businessman in Los Angeles and Parkinson’s patient. The story is about his coming to terms with his illness; problems in his marriage, with his children and at work are central themes in the narrative. Sue Miller is the author of A distinguished guest (1995), which tells the story of Lily Maynards, 80, Parkinson’s patient and a celebrated author. The novel covers the latter days of this patient, in which both her family circumstances and her past play an important part. Finally, in What we did on our holiday (2000) John Harding describes patient Jim Taylor and his family, on holiday on Malta. Jim appears to be a Parkinson’s patient in a relatively advanced stage. In this novel, too, family affairs, the past and everyday events are important themes. Apart from this, personal accounts from Parkinson’s patients were employed as research material (Stern, 1994; Van Der Valk, 1994; Walboomers, 1994; Blok-Van Hilten, 1998), as well as research articles (Clarke, Zobkiw and Gullaksen, 1995; Habermann, 1996; Lindgren, 1996; Abudi, Bar-Tal, Ziv and Fish, 1997; Wallhagen and Brod, 1997; McCall, 1998; Shulman, 2000, and Karlsen, Larsen, Tandberg and Jørgensen, 2001).

B EING A PARKINSON ’ S PATIENT

Results: Aspects of being-a-Parkinson’s-patient The analysis and synthesis of the research material resulted in the following descriptions. Corporality: Monotonous and unexpectedly whimsical One patient tells how Parkinson’s disease presented itself: ‘Initially, the process went very slowly and did not cause me great concern. Yet slowly but surely it started pulling at my body and more and more little things started to turn into signs of degeneration’ (Walboomers, 1994, p. 9). Symptoms become ever more obvious: cramp occurs when writing, the toes curl involuntarily, patients are unable to squeeze toothpaste out of the tube. The patient notices changes to the voice, difficulty with starting to walk, difficulty with getting out of a chair or out of bed. To the Parkinson’s patient body movement is no longer something that can be taken for granted, no longer something done without thinking. Many things require conscious thought, as it were when switching from ‘autopilot’ to ‘manual’ with new techniques (Stern, 1994, p. 18). ‘Swimming is something I do with my brain, otherwise my legs won’t work’ (in: Van Der Valk, 1994, p. 57). Problems with initiating movement (beginning to walk, sitting down or getting up, turning in bed) are described in virtually all the texts that were object of this research. Patients can use deliberation to prompt the body to move, as if it were an object that is difficult but not impossible to handle. Sometimes the body is as it were tricked by the ‘I-subject’ (Walboomers, 1994, p. 26). Sometimes the body seems or appears to react in given situations. Lived circumstances may appear provoking either negative, threatening, or positive, easing reactions. ‘Her legs became “frozen” when she was attending a funeral’ (Lindgren, 1999, p. 359). One patient says that ‘her legs “froze” when she was trying to dance at a wedding, and it was because her care giving spouse did not twirl, and move at the exact time she told him’ (Id., p. 362). In situations of fear and stress, the body may react by tremors: ‘He should not think of it. He tried to focus his attention on his work, he arranged a few documents. His right hand trembled badly. As if the questions that troubled him since Judith’s doomed telephone call manifested themselves as tremors. Ever more violently’ (Loeckx, 1994, p. 124, see too p. 127). Embarrassing questions appear as tremors. It seems as if the body becomes rigid, as if it offers resistance if the world makes an unexpected, overwhelming appeal on the patient. As if the patient is ‘pulled about’, literally and metaphorically. One

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notices resistance when attempting to move the body. In case of major events, if the world threatens to become too much for the patient, the body reacts with ‘palpitations, nausea, increased blood pressure (. . .) being rigid with fear, the words stuck in your throat, shaking knees, trembling like a leaf, losing your bearings, being pinned to the ground’ (Blok-Van Hilten, 1998, p. 2). Yet in certain situations circumstances may well turn out to have a positive effect on the body’s functioning. John Harding describes a situation in What we did on our holiday in which Jim suddenly, ‘as if touched by magic,’ appears to be able to dance: There he places their hands together and positions them for dancing, (. . .) Anthony removes his hands from my parents and, as if touched by magic, they begin to dance. There’s a momentary altercation while mum rearranges their hands, so that her arm is now around Dad’s waist and his on her shoulder. With her leading now, they move off, Dad shuffling slowly, Mum already lost in the rhythm of the night, steering him along. (Harding, 2000, p. 224) If Jim feels particularly protected, which is in the arms of the son he has found again, he suddenly fully relaxes. ‘Dad, who is as stiff as a corpse whenever I try to lift him, immediately relaxed and went as floppy as a newborn baby’ (Harding, 2000, p. 175). At a certain moment this son massages the sick father with suntan oil: Dad’s paper thin skin seems to gradually absorb moisture, to lose its parchment quality and become supple and younger. And as Anthony works his shoulders again, their stiffness yields, they relax and drop. He no longer holds his arms stiffly, they swing loose by his sides. Dad’s whole frame seems to unbend before our eyes. (Harding, 2000, p. 207) If the same Jim is really angry or otherwise emotional, he also appears to be able to speak clearly and audibly (id., pp. 29, 198, 315). But sometimes the body appears to function independently on the lived circumstances, and to distance itself from the will and intentions of its owner: ‘(My hands) don’t do what I want (. . . my mouth) chatters if it pleases him’ (Van Daelen, 1990, p. 9 ff.). When Jim, in What we did on our holiday, appears to be confused during the morning ritual of washing and dressing, ‘he won’t open his mouth for his teeth, but holds it tightly shut, the opposite order somehow being dispatched by his brain’ (Harding, 2000, p. 200). Lily Maynards, in A Distinguished Guest, can no longer concentrate when writing or dictating: ‘Her voice was unusually strong. “It’s my machine. My brain (. . .) I

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just can’t make my mind . . . stay on it. I want – or my mind wants. To go its own way. I just stop.” ’ (Miller, 1995, p. 106). The body of Marcus Holten, in Een grote blauwe cirkel, does not react adequately: ‘It’s getting too hot; he wants to get out of his easy chair. Again he doesn’t succeed, probably because he is afraid he won’t manage, which makes his muscles go rigid. Damn, damn. He has lost control over his body, it follows its own whims, not his will. It makes him depressed’ (Loeckx, 1994, p. 37). To the Parkinson’s patient the body is first something one is, then something one has, and finally something one no longer has – almost in chronological order. The body, or part of it, can be observed as something one hates: ‘the hated hand’ (Loeckx, 1994, p. 125). There is a kind of paradox in the physical appearance of the Parkinson’s patient, which exists on the one hand in the monotonous and on the other hand in the sudden and unexpected. On the one hand a striking feature is the monotonous, the flat and expressionless in the Parkinson’s patient’s appearance, in the stony face with little expression as well as in the monotonous, muffled voice. Both verbal and non-verbal communication are markedly monotonous, without variation or expression (McCall, 1998, p. 33). Movements give the impression of being artificial. Paula Loeckx employs the image of a mechanical doll when describing Marcus, who in a certain situation appears unable to rise from his chair: “Let him in,” Marcus said, energetically. Almost immediately, the door opened and his secretary presented him with a man of impressive appearance, a man who looked startlingly like his father: broad shoulders, heavy jaws, a gigantic hand stuck out at him. Marcus could not rise from his chair. The white hand became bigger, came closer to his face, turned into a white flat object that filled the entire room and threatened him. He panicked. “I can’t get up,” he cried. “I’m paralyzed.” And at those words, in a belated reaction, his body veered up like a mechanical doll and he stood eye to eye with Mr. Douglas . . . (Loeckx, 1994, pp. 8–9) The patient’s walking, too, gives the impression of being mechanical. In order to get Jim walking, he is jogged – described by Harding (2000, p. 50), yet not as an example that caregivers should follow! Once the mechanism is working, there is no stopping him: ‘Dad takes the flights at a run, going so fast my main worry is he’ll fall flat on his face’ (Id., p. 129). Be it as a mechanical doll, as Loeckx characterizes it, or a robot, as Miller calls it (1994, p. 57), in his corporality the Parkinson’s patient makes an expressionless and at times artificial impression. This is also the case for

Lily Maynards, when at a certain moment she is tired and cannot concentrate when dictating: ‘Lily’s hand rose slowly, as if being levitated, as if being pulled by a wildly trembling marionette string, to her own forehead’ (Miller, 1995, p. 102). Increased lack of differentiation not only manifests itself in the voice, in facial expression and other ways of non-verbal communication, in posture and movements, but also in the appreciation of things and events. Marcus also loses his sense of differentiation: ‘He reads advertisements without the contents registering with him. He no longer notices the subtle differences between one or the other way of phrasing. Soap is soap and whether it cleans or protects the skin makes no difference’ (Loeckx, 1994, p. 35). The physical appearance of the Parkinson’s patient therefore seems to be marked by flatness, monotony, lack of expression. Yet on the other hand his life is to a large extent marked by the sudden and unexpected. Virtually all texts mention this. The ability to dance ‘as if touched by magic’ (Harding, 2000, p. 224), to relax ‘immediately’ (Id., p. 175), the frame that ‘seems to unbend before our eyes’ (Id., p. 207), are some of the examples mentioned above. Freezing, too, is such a phenomenon: suddenly, without noticeable cause or reason the patient freezes, is rooted to the spot, unable to move in any direction (Lindgren, 1996, pp. 359, 362). Physical changes can present themselves all of a sudden (McCall, 1998, p. 33). A sudden change takes place in Lily’s posture and appearance during a painful conversation: ‘It was as though some final peg that held her together had been pulled. Her mouth slackened, her hands hung, wildly dancing’ (Miller, 1995, p. 206). Space: Established with difficulty If the body ‘makes’ someone’s space (as well as someone’s time: Merleau-Ponty, 1945, pp. 101 ff., 164 ff., 277 ff.), how does the well-considered and mechanical but on the other hand unpredictable body constitute the Parkinsons’ patient’s space and time? Paula Loeckx describes Marcus struggling, as it were in conflict with his chair: He opens his eyes. The sun slaps him in the face like an unthinking, tired father (. . .) He tries to push the armrests of his chair forward and move the back up. Is it him who trembles so severely, or is it the earth that shakes (. . .) He’d better (. . .) control his panic. If he stays calm, the job does itself. And so it is: the armrests move forward under the pressure of his hands and his back is pushed upward. He is sitting up straight. Wait a moment. He takes a deep breath and pushes himself out of the chair. (Loeckx, 1994, p. 40)


To a Parkinson’s patient, space can be limited to the space immediately surrounding him: the chair he is sitting on or from which he wants to rise, the bed in which he is turning, the stairs he is climbing, the road he is crossing. Yet these spaces are not occupied without thought. Getting in and out of bed or turning in bed are ‘acts I have to perform and no longer acts that simply happen’ (Blok-Van Hilten, 1998, p. 1). Space turns into well-considered space to the Parkinson’s patient, it is occupied with caution and it is not easily conquered. ‘Jumping out of bed is not an option any more’ (Id., p. 1). Although the patient occupies space with caution and deliberation it sometimes appears difficult to find and keep his balance. He runs the risk of falling. Jan Peter Stern describes what happens then from his own experience: ‘When you fall, your body takes off with you without your feet agreeing. This gets even more dangerous if your feet try to overtake your body, for then it goes much faster’ (Stern, 1994, p. 12). ‘I’m still surprised at how quickly a movement forward can turn into a sudden dive downward, before I realize it I am on the floor’ (Id., p. 12). Falling means: suddenly finding oneself in an uncontrollable, chaotic, hostile, hard environment (Van Der Bruggen, 1977, p. 51). Time: Always hurrying, getting nowhere fast Grave illnesses can change drastically a person’s awareness of time, similarly to other major changes like marriage, the birth of a child, the death of a parent, retirement. Present, past and future may cover an altered meaning (Brough, 2001, p. 40; Toombs, 2001, p. 258). For the Parkinson’s patient, at a given moment the past, or events from the past, may take on another meaning. Marcus, the main protagonist in Paula Loeckx’s Een grote blauwe cirkel, develops another view of his past, or rather: certain events are given another specific meaning in his present state of being ill. The pain he suffers now and the way he deals with it – his self-torment, always choosing the painful, difficult solution – appears to be related to events in his youth, which from the point of view of the present take on another meaning than they had in the past. Marcus now realizes that he is not good enough now, not worthwhile, because he now begins to see that then, as a ‘little, hesitant boy’ he was not considered good enough (Loeckx, 1994, pp. 4, 14, 24 ff., 38 ff., 41). Every day Parkinson’s patients are reminded by numerous incidents of what things were like in the past. Many look back with sadness of what has been. To some, the moment the diagnosis was given is painful (as is how this was done). Many need time to come to terms with what has been lost.

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Not only does the past get a different meaning in the present state of being ill. Many know that the future they dreamt of, for instance a long and happy retirement with ample time for hobbies and the partner, will not materialize. This loss, too, is grieved and mourned for. The future that will unfold from the affected present will be of a specific nature as well. ‘How much time would he have left before the illness would reduce his life to a housebound existence? He shouldn’t think about it. There was so much he still wanted to do’ (Loeckx, 1994, p. 115). Although Parkinson’s disease usually progresses very slowly and the life expectancy of patients is generally only little worse than that of healthy people, it also occurs that the disease progresses dramatically fast. Anyhow, the disease does progress, and, consequently, in being a Parkinson’s patient death can be read as a watermark in paper. Pain burned behind his eyes. A pain sharper than the piercing wind on the beach. But he had to go through it. He could no longer avoid this pain if he wanted what little happiness was left, he had to accept it and feel it, no matter how afraid he was. The pain that his life was almost over and that terrible times were ahead. The raving, the drooling. No, not that. (. . .) He should not recoil. He had to face the undermining of his body and prepare for worse (. . .) Would he finish his life at a self-chosen moment when it became too humiliating? Or would he cling to every little bit of happiness left? Could there be sufficient joy left to keep going to the end? (Loeckx, 1994, pp. 128–129) Lily Maynards raises this spectre too. ‘Was this what life would be now, this vegetable creep of time?’ (Miller, 1995, p. 185). ‘She saw her father suddenly, wearing a soiled tablecloth like a cloak around him, turning in fear from her approach, his gaze milky and unknowing’ (Id., p. 230). The future also appears a spectre to Jim and his family, when it is thought unavoidable that his future will be in a nursing home, with ‘his day measured out in bags of urine decanted from his bladder by a catheter’ (Harding, 2000, p. 272). Many Parkinson’s patients (therefore) do not keep their eyes on the distant future, but only on the immediate future. The immediate future is uncertain and unpredictable enough. The wide, open future, full of challenges and opportunities for healthy people, shrinks to a here-and-now for Parkinson’s patients, with many patients constantly observing themselves and interpreting the smallest physical symptom as an indication for improvement or deterioration. The afflicted body re-divides, re-orders, re-arranges time (Brough, 2001, pp. 37 ff.). The time can be

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told from the medications that have to be taken at very precise intervals. ‘Because patients may require medications as often as every 2 hours, even a 15minute delay can seriously affect their mobility’ (Wallhagen and Brod, 1997, p. 26). ‘Timing and dosage of therapy must be tailored to suit the individual’s need’ (McCall, 1998, p. 32). Time is measured by the need for and the effect of medication, measured by the pillbox: ‘I got a pillbox that beeps when it is time for my medication’ (Loeckx, 1994, p. 11). Meals and snacks or drinks between meals, sometimes related to the effectiveness of medication, also have a decisive influence on time planning. ‘Effectiveness of medication is also influenced by the protein content of food. Therefore, meal planning is another way that patients or their caregivers can achieve some control over symptoms’ (Wallhagen and Brod, 1997, p. 26). Sleeping and waking order the day as well (Stern, 1994, p. 20). Days and weeks are also measured by defecation, as Harding describes so graphically (2000, pp. 44, 62, 120, 137, 144, 146, 150, 307 ff.). The afflicted body arranges time: activities affected by the tremor, for instance shaving, are postponed until a moment in the day when the patient suffers as little as possible from it (Stern, 1994, p. 14). The existential paradox that manifests itself in the corporality of people with Parkinson’s disease is also expressed in the way the patient is in-time. On the one hand the immediate future appears uncertain and unpredictable. On the other hand the Parkinson’s patient’s time is characterized by immobility and lack of change. The patient’s life sometimes seems to be at a standstill, or at least every act, everything that happens seems to last for an infinitely protracted time. Time seems to stand still and the street seems infinitely wide when the Parkinson’s patient crosses it. In that shuffling body, the feet of which hardly seem to move forward at every little step and which, with its bent frame, seems to concentrate on the here, not on the task and challenge of reaching the opposite side of the road, time and space seem to meet in a hereand-now. To the Parkinson’s patient, time seems to unfold in slow-motion. The patient changes to a lower gear, both literally and metaphorically. It is striking how driving a car is used in personal accounts as a metaphor for being a Parkinson’s patient or aspects of having Parkinson’s. The descriptions all point in the same direction. The problem of initiating movement is called ‘trouble getting started.’ The engine will not start. The engine needs fuel; Stern realizes that he, as a Parkinson’s patient, needs much more fuel for the same amount of miles and so he has to eat more often and take more substantial meals than in the past (Stern, 1994, p. 20). The Parkinson’s patient’s life runs ‘at

the speed of the lowest gear’ (Blok-Van Hilten, 1998, p. 2). ‘I have only one gear and that’s a slow one’ Stern says (1994, p. 11). ‘Everything is done with the brakes on’ Anneke Blok says when observing her life as a Parkinson’s patient (Blok-Van Hilten, 1998, p. 1). Similarly, Stern concludes: Having Parkinson’s is like ‘driving with jammed brakes’ (Stern, 1994, p. 20). On the other hand the patient often seems in a hurry; he seems to be short of time. Harding describes this paradox as: ‘Once you start him off, slip him into first gear with a little tug, he changes rapidly into overdrive so that he’s all but running. It’s the festinating walk that’s a paradoxical feature of Parkinson’s, always hurrying, getting nowhere fast’ (Harding, 2000, p. 84). The patient cannot cope with high speed or time pressure: ‘I can’t follow the developments at the office any more. I have become rigid in body and mind. I am afraid of everything new. I can’t cope with the time pressure any more, this high speed at which all the work has to be completed’ (Loeckx, 1994, p. 49). If an atmosphere of haste is generated, this can have the opposite effect: slowing down even more, getting blocked, shaking. Then, but not only then, the unexpected happens. Suddenly a total block may occur, even when walking (freezing). ‘Something you were able to do without any problem just a few minutes before, has suddenly become impossible – but a few minutes later you suddenly can do it again’ (Stern, 1994, p. 9). ‘There are times that I can do everything rather well, and then suddenly the same things are impossible to get done (. . .) You really can’t predict when you can do something or not’ (Blok-Van Hilten, 1998, p. 3). These unexpected facts do not seem, at least not for most of the time, a reaction of an existing subject to an appeal from its environment. Neither freezing nor the sudden initiation of movement show any continuity in time. The future does not smoothly and effortlessly turn into the present. There is discontinuity. Things: A difficult relationship In the here-and-now of a patient, things, objects, but also facts (things of life) can take on a specific meaning (Van Den Berg, 1952, pp. 26 ff.; Toombs, 2001, pp. 248 ff.). It is understandable that the Parkinson’s patient relates in a specific manner to the things closest to him, which are part of his immediate personal and bodily well-being and functioning and his outward appearance. The patient as a person, for instance, has a special relationship to clothes, which are generally considered something very personal, a second skin, a way to present oneself to one’s fellow human being. This relationship may become difficult and strained. It


is a situation in which the patient chooses for, or rather against, loafers or classical footwear: He couldn’t untie his shoelaces. “Just leave those shoes in the wardrobe, Marcus. Put on the moccasins I bought for you.” “Shoes with laces look so much more formal.” “Not necessarily. Not at the price I paid for those loafers. They’re Bally shoes, you know.” He recognized the brand. Yet as long as he could manage, he would keep dressing as a businessman. And classical footwear was part of that, as were dark, pinstriped suits and eccentric silk ties. Those clothes had become a second skin, which he couldn’t discard without belying his nature. (Loeckx, 1994, p. 13) The special relationship the patient has to medication and food, whether or not in combination with each other, has been mentioned before. A patient may be disappointed with his medication. This happens to Marcus, who has been reading so much neurological literature for such a long time. ‘He waited for the impact of the increased medication, for a change for the better in his health. Yet this did not materialize, or it was not half as spectacular as he had hoped’ (Loeckx, 1994, p. 35). Some patients reach a point where they renounce their faith in all that theoretical knowledge; they begin a secret relationship with their medication, which allows space for gaining their own experience and taking their own decisions (Habermann, 1996, pp. 404–406). Being a Parkinson’s patient is apparently (also) characterized by the specific relationship between patient and medication. Patients listen carefully to their bodies, waiting in fear. They are alert. They know that ‘when getting older (. . .) the organs which regulate the excretory functions of the body begin to function less effectively, which results in medicines staying in the body longer and possibly having a stronger effect than expected’ (Stern, 1994, p. 23). Not only is the afflicted body cared for and not only are time and space created by the medication, living-together and fellow human beings are viewed in the light of this medication too. ‘Participants viewed their health care providers as prescribers of medication. Their interactions were centered around the scheduling and amount of medications they should take’ (Habermann, 1996, p. 411). In the same way food may take on a specific meaning in the life of a Parkinson’s patient. But food, a balanced diet, is not only a precondition for functioning optimally. Food often has to be conquered with difficulty, i.e., if the patient has problems with swallowing or suffers from tremors. ‘Dad picks up the long

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spoon that came with the ice cream and scrapes at the mound of cream. A dollop drops into his lap’ (Harding, 2000, p. 187). Food seems, as it were, to offer resistance, yet it causes another discomfort as well. The Parkinson’s patient may suffer from, at times serious, constipation. Food then signifies: danger of constipation, or: works as a laxative. Similarly, drinking may signal: having to get out of bed during the night, with all the problems this entails, to go to the lavatory. Food and drink and the Parkinson’s patient relate to each other with difficulty. To a Parkinson’s patient, a loose rug is a serious tripping hazard. Patients will often view objects or situations surrounding them from the point of view of their well-being and functioning. This is a functional relationship. Objects may take on a limiting or rather a stimulating meaning. Important are, for instance, the handles at the patient’s bed or toilet, and pillows in his bed or chair (or sometimes rather their absence), which enable the afflicted body to occupy this immediately given space more easily; or satin sheets, which allow the patient to move more easily in bed. Important, too, are the aids provided for activities of daily living (ADL), as well as aids that facilitate communication: typewriter and PC, telephone and answering machine, taperecorder, videorecorder and videotapes, radio and TV. Things which contribute to recreation and pursuing hobbies are mentioned as well (Clarke, Zobkiw and Gullaksen, 1995, p. 292). The way the patient relates to the things of life is not always problematic. There is much to enjoy as well. Great pleasure can be derived from simple things, which a healthy person easily fails to notice, such as listening to music, drinking tea, or the ability to chew breakfast properly. ‘I have developed a different and more positive outlook on things,’ Stern says (1994, p. 7). This has long been a typical experience and observation of many people who suffer from a disease, not only those with Parkinson’s disease (Van Den Berg, 1952, pp. 26 ff.). World: Airport in a foreign country It is obvious that in the Parkinson’s patient’s world the disease does not play a marginal role. Being a Parkinson’s patient encompasses the entire life and constitutes its core. The above also conveys clearly that the world concentrates itself around the patient. The time stretching before him will never reach a distant future, space is limited to the patient’s immediate surroundings – in the final stages of the disease sometimes even to a wheelchair or bed. The things that play a role in his world are often directly related to the patient’s immediate well-being and functions.

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Much has disappeared and much has been lost from the ‘life-world’ of the Parkinson’s patient. The patient may deeply mourn the loss of health, work, independence, responsibility, social contacts, the ability to function as a normal human being. Loss seems a central word when describing the reduced world of the Parkinson’s patient, as does the resulting sadness, ‘chronic sorrow’ (to be distinguished from depression, even though the two are closely related); it forms the basic attitude, the fundamental constitution (‘Befinden’, Plügge, 1967, pp. 97 ff., 119 ff.) of being a Parkinson’s patient. According to Stern, being a Parkinson’s patient is ‘a challenge to relax muscles’. As ‘challenge’ implies activity, this involves a contradiction: an effort to relax. The ‘life-world’ of the Parkinson’s patient is characterized by paradoxes. The world in which (or better: at-which) the Parkinson’s patient is, presents itself on the one hand as rigid and without detail, and not inviting emotional interaction. On the other hand the Parkinson’s patient’s world is unpredictable and whimsical. Apart from this, the world appears to impose itself, unasked and unwanted, on the patient. On such occasions the patient is pulled about, literally and metaphorically. Walboomers summarizes his having Parkinson’s as follows: At times it is as if I am abroad. People do not hear me properly or do not understand me. Every now and then I imagine myself at the airport in a foreign country. There, too, they start pulling your arms and legs until finally a wheelchair arrives. That’s what happens here as well. “Take care, don’t fall, just hold on to me.” . . . I make clear that I want to walk on my own. It sounds by no means friendly when I urgently ask them to let go of me. I do appreciate the good intentions and spontaneous sympathy, but I don’t like the fussing. I might start feeling sorry for myself. On my part, I try to make clear to wellmeaning people what they can do. If all this is to no avail, I stop talking and thinking and just let them drag, pull and lug me along . . . . (Walboomers, 1994, pp. 46–47) Unasked and unwanted, the unknowing yet wellmeaning outside world invades a sick person’s existence. If the world suddenly proves unsurveyable, he may respond by freezing: from one moment to the other, the patient may be pinned to the ground in a frightening here-and-now. The other: Keeping contact, keeping a distance Living-together-with the Parkinson’s patient is characterized by communication problems on both sides,

depending on the different stages of the course the disease takes and on personal capacities. “Come on, Dad. What is it?” I’m beginning to lose patience, and I hate myself for it. Slowly he raises his good hand, lifts up his spectacles and stares at me. He lowers the glasses and stretches out his hand towards me. (His fingers tremble heavily). (. . .) They touch my hair and rest there for a second or two. I don’t know what’s happening. (. . .) He says something, but it comes out all throaty and I don’t understand it. He clears his throat and tries again. I can make out “Nick”, but nothing else. He says a whole paragraph and pauses, lips in a grimace-smile and then he says some more. His eyes mist over and then, extraordinarily, he sniffs, as though his nose is beginning to run. (. . .) I put my arm around him and without thinking, kiss him lightly on the cheek. His skin is sharp and scratchy to my lips from the permanent residue of stubble because he’s so hard to shave. I take my arm from around him, grasp his claw and lead him by it slowly down the steps. (Harding, 2000, pp. 311–312; also see pp. 198–199) Communication problems are often related to the difficulties with speech, which are to many patients the most frustrating aspect of having Parkinson’s. Although speech often gradually declines in the course of the disease, the patient may, despite his muffled speech in a later phase, at times suddenly be able to speak clearly and comprehensibly. This fits in the picture of the unpredictability which is one of the characteristics of Parkinson’s disease. The mouth may act willfully: it ‘babbles if it chooses to do so’ (Van Daelen, 1990, p. 12). Yet the above quotation shows that the gesture, made with such difficulty and misunderstood even by close family, is a contributing factor in the breakdown in communication. The patient begs to be understood (Harding, 2000, pp. 282, 315). In the problematic relationship between the patient and the other it is not uncommon that the former is misjudged and wrongly approached. Incidentally, the communication problem exists on both sides: ‘Because the lack of affect in speech and the problems of articulation interfere with communication, the patients often feel alone and alienated’ (Abudi, Bar-Tal, Ziv and Fish, 1997, p. 55). In an advanced stage of the disease, patients may, forced by the situation, begin to leave work and responsibilities to members of the family or colleagues. The patient may begin to feel marginalized and isolated, ‘alone and alienated.’


Walboomers (1994, p. 22), too, considers ‘the confrontation with the outside world’ the most difficult. ‘They react so clumsily. What should they do with someone whose head shakes, whose arms and legs tremble? They keep a safe a distance. Isn’t it logical that I am inclined to withdraw? I often feel guilty.’ This process of gradual isolation may result in final alienation: ‘She felt canceled out. Erased’ (Miller, 1995, p. 185). Alone and alienated; cancelled out, erased. This is the threat hanging over being a Parkinson’s patient: a way of being which could then barely be understood as co-existing. Yet on the other hand there is a danger of a specific way of co-existing which many Parkinson’s patients appear to fear just as much: total dependence on someone else. ‘The greatest fear is to become totally dependent on others, that I’d have to ask for assistance with all movements I have to make in order to function as a human being. Loss of independence does not automatically imply loss of self-worth, but this does receive quite a blow’ (Walboomers, 1994, pp. 47–48). Driving appears important to many patients in their striving for relative independence. During his last visit to the doctor the consultant had specifically asked him whether he still managed to drive a car. Although he answered affirmatively, he was told he could now only drive around West-Los Angeles, in areas that were familiar to him. The next time his medication would be increased, this right would also be withdrawn. Marcus shouldn’t think of it. What to do then? How would he fill his days? Whatever the cost, he had to keep this freedom as long as possible. He should not cause an accident. (Loeckx, 1994, p. 89) Jan Peter Stern from the Parkinson’s support group knows that to most people driving is directly related to their feeling of self-worth (Stern, 1994, p. 12). Driving is an expression of autonomy, independence, in particular to those who no longer experience independence in their profession. Apart from this, driving widens the scope of someone’s living space. People try to keep it up as long as possible, even if they are so unsteady when walking to their car that the police might suspect them of drinking; or even if the patient has difficulty staying in his lane once on the road (Stern, 1994, p. 12). To many patients it is a frightening experience when they have to conclude that their ability to drive is reduced. The Parkinson’s patient’s co-existing therefore seems characterized by opposite movements. On the one hand the patient resists the threat of isolation, on the other hand he fears too much dependence and resists unwanted interference. This contradictive

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situation calls to mind the metaphor described above, of being abroad, at an airport in a foreign country. On the one hand the traveller-patient is not heard properly or not understood. He seems ‘alone and alienated; cancelled out, erased.’ On the other hand he becomes the object, or rather victim, of inadequate fussing: arms and legs are pulled about; eventually he lets himself be dragged, pulled and lugged along. The Parkinson’s patient’s paradoxical living-together with the other manifests itself in a ‘don’t touch me; leave me alone’ on the one hand, and in an ‘involve me in everything, don’t lose sight of me’ on the other. It involves both keeping contact and keeping a distance at the same time, as described in Van Lennep’s phenomenology of the road user (Van Lennep, 1953, pp. 165–166). The human being as subject: Loss of identity? The increasing dependence on the one hand and the increasing isolation on the other may cause a feeling of alienation. The Parkinson’s patient may begin to feel that his individual character or identity is under threat. Being ill is an isolating experience. Being a Parkinson’s patient involves the experience of being thrown upon one’s own resources more and more. Patients sometimes withdraw, ‘locked inside their homes as well as themselves’ (Harding, 2000, p. 68). If you have Parkinson’s, you sometimes feel very lonely, as Stern puts it (1994, p. 10). He calls it the soloexperience: ‘some people have to learn to live with their Parkinson’s alone, without the help of their family or friends’ (Id., p. 17). To the patient (the subject) it is an even more painful experience to be observed as an ‘object.’ Jim Taylor feels often reduced to an object, when he is eating and all things are going wrong: ‘Dad hates anyone looking at him when he’s eating (. . .) it’s the only pleasure he’s got left to him and they have to spoil it by staring at him’ (Harding, 2000, p. 74). Feeling reduced to an object, not being appreciated as an existing human being, makes the patient utterly miserable. At times the patient observes himself as an object in a mirror or a window-pane. Sometimes it does not look so bad, sometimes it does. The positive selfimage everyone tries to keep up is at times shattered. Physical decline and increasing dependence are often an attack on someone’s feeling of self-worth. Lily Maynards experiences her failing at work and personal decline as follows: ‘Of course, Lily reminds herself ruefully, she is like a child. It’s worth remembering that. Not reduced to diapers yet, but it will come’ (Miller, 1995, pp. 54–55).

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The feeling of self-worth dwindles if the patient doubts himself. Marcus Holten, too, thinks he no longer counts: “Professionally, I’m worth nothing now. I can’t follow the evolution at the office any more. I’ve become rigid in body and mind. I’m afraid of everything new. I can’t cope with the time pressure any more, the high speed all the work has to be done with (. . .)”. “It doesn’t help to run away from the truth”, (the psychologist) said, weakly. “But it’s a hard truth, isn’t it? Everything you have built your feelings of self-worth on is simply swept away, isn’t it?” “You may well say so,” Marcus agreed, wryly. And then, half desperate: “But tell me, what am I still worth now? What am I worth anyway if I don’t count for my business any more?” (. . .) “Are there no other areas in which you are worthwhile?” “Not that I know of”. (Loeckx, 1994, pp. 48–50) There are times when the patient does seem to lose grip of himself. This may happen as a result of a change of medication (as illustrated by Van Daelen’s novel, Van Daelen, 1990), but the last phase of Parkinson’s disease may also involve mental deterioration, or even dementia. The patient will often be alert to the symptoms. Novelists like Harding and Miller give impressive yet cruel descriptions of how Parkinson’s does by no means leave the intellectual faculties of the main protagonists unaffected. Lily Maynards feels how the disease wins from her: ‘Her disease seemed for the first time a visceral thing to her, a tree trunk growing inside her, filling her with thickness, woodiness, and now tentacling into her thoughts, her soul itself, hardening them’ (Miller, 1995, p. 184).

Conclusions and discussion The research question to be answered in this paper is: What is characteristic of being a Parkinson’s patient, taking into consideration the different aspects, the links in the existential chain, that are distinguished in existing? Based on analysis of literary texts and personal accounts, supported by scientific publications, the answer may be summarized as follows. Being-a-Parkinson’s-patient can be described as a way of existing, in which the different aspects of existing appear to be affected ‘one after another.’ The corporality of the Parkinson’s patient is not something that is easily disregarded. The body seems to come with operating instructions. The bodily

functions require constant consideration: the wellconsidered body. Furthermore, the body also appears strange, even hostile – by not reacting (freezing) or not reacting adequately, yet often without clear cause or reason. Sometimes the body does react in certain situations, which can be either stressful or relaxing. The body then similarly reacts by getting cramped or, by contrast, relaxed. The patient’s physical appearance is marked by a paradox. On the one hand it gives the impression of being mechanical, flat, expressionless, rigid, on the other hand sudden unexpected, unpredictable changes may occur. Space presents itself to the Parkinson’s patient as something that is not constituted naturally, spontaneously or pre-reflectively. The afflicted, cautious body constitutes space with difficulty and deliberation. By the standards of the afflicted body, space may prove to be inadequate. At times space appears uncontrollable, chaotic, hostile and harsh: the patient falls. Freezing seems to consist in: being in a space which cannot be constituted by any means. The body also constitutes time. To a Parkinson’s patient the past or past events may take on a specific meaning, related to the present; the future, too, is specific. Memories of the past may cause pain or sadness, in particular if the patient realizes what is lost. With respect to the future, the patient may feel sad about everything that will not be accomplished. The patient is afraid that the future will be unbearable, and (therefore) does not look far ahead. The afflicted body orders and arranges time, in particular by medication, food or the combination of both, as well as by sleeping and waking, excretion and other bodily functions. Parkinson’s patients’ being-in-time shows a similar existential paradox as their corporality. On the one hand time seems to stand still, on the other hand, due to the unpredictability of events time appears obscure, unsuspected and discontinuous. The Parkinson’s patient has a specific relationship in particular to the things closest to him, for instance his clothes. This relationship is difficult and strained. The same is the case for medication and food. Food is a prerequisite for functioning as well as possible, but due to problems with swallowing and tremors it has to be conquered with difficulty. This is aggravated by the fact that those with Parkinson’s disease may suffer terrible constipation, so that food is constantly regarded in terms of possible problems with defecation. Objects in the home also take on a specific meaning, measured in terms of well-being and functioning. Yet the relationship to things is not always problematic; there is a lot to be enjoyed as well. The world of the Parkinson’s patient is domin-


ated by being ill. Sorrow seems a central word in the patient’s ‘life-world’: sorrow for a lost past, an elusive present and lost dreams for the future. In the course of the disease the world becomes smaller and concentrates around the patient. The patient’s ‘life-world’ is marked by the paradox mentioned before. On the one hand the world is rigid and without detail and does not invite emotional interaction. On the other hand it is unpredictable and whimsical. Moreover, the outside world may, unasked and unwanted, impose itself on a sick person’s existence. In this context freezing appears as: being-in-a-world that one suddenly can no longer survey. People share their ‘life-world’ with the other. The Parkinson’s patient’s being as being-together-with is characterized by communication problems that are not only related to speech difficulties, but which include facial expression, gestures and attitude as a whole. The problems appear to occur on both sides, as do the reactions: the Parkinson’s patient runs the risk of becoming marginalized and isolated. To be or feel “alone, alienated; cancelled out, erased” is a threat to the Parkinson’s patient’s existence. On the other hand he is equally worried about becoming too dependent on others. Again a paradox manifests itself, which may be elucidated by means of the metaphor of driving, which in itself appears an isolating rather than a socialising activity. Being a Parkinson’s patient means more than driving in the lowest gear and with jammed brakes. It also means: keeping contact, yet keeping a distance. Through the movement that is ek-sistere, the beingat-the-world, the existing subject manifests itself: the one who is-at-the-world. If the ‘life-world’ is marked by sorrow, as described above, one may say that sadness or chronic sorrow characterizes the ‘Befinden’ of the subject pole, the Parkinson’s patient. He finds himself in a situation that gives rise to sadness, dejection, and feelings of depression. In sum, the analysis provides insight into being a Parkinson’s patient as a mode of being. Such insights may have application in the clinical context. Indeed, if health care giving is to be successful, it is essential to address the global sense of disorder that permeates the patient’s everyday life (Toombs, 2001, p. 259). Adequate care giving originates in thorough, comprehensive knowledge, that may result from a quest of typical commonalities (Widdershoven, 1999). More in particular, this analysis has pointed out four characteristics of being a Parkinson’s patient that however lend themselves for advanced study, with regard to adequate health care. 1. Being a Parkinson’s patient appears to be characterized before all by the existential paradox, noted

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repeatedly in this article. The Parkinson’s patient’s existence appears both immobile and at the same time unpredictably whimsical. This is the case for his corporality, his being in-time and in-space, his relating to objects and things, his entire ‘life-world,’ his beingtogether. It is often problematic for the patient himself to deal with this paradox (Habermann, 1996, pp. 406– 407; McCall, 1998, p. 35; Stern, 1987), much less for his caregivers, either professional or not. How to react adequately to sudden and unexpected bodily changes like ‘freezing’? How to give structure to the patient’s living in an obscure, unexpected and discontinuous course of time? How to assess the meaning that objects and the things of life have for a patient and how to trigger them for his benefit? Care plans, protocols, or overviews of, e.g., professional nursing care activities do not answer yet these questions (McCloskey and Bulecheck, 2000). 2. One of the significant features of Parkinson’s is the underlying ‘sadness’ or ‘chronic sorrow’ or ‘existential sorrow’ that seems to be part of the Parkinson’s patient’s basic attitude, his ‘Befinden.’ This needs further clarification. If a global basic attitude in Parkinson’s is recognized indeed, then however the nature of this ‘Befinden’ should be better described. How do sadness or chronic or existential sorrow relate to feelings of depression, or maybe to the well-defined psychiatric illness of depression (Habermann, 1996; Lindgren, 1996)? Other authors mention apathy and amotivation as basic attitude in Parkinson’s (Shulman, 2000), or fatigue (Karlsen et al., 1999). In egodocuments these threatening feelings are related to depression. ‘The most cruel weapon of Mr. Parkinson is depression . . .’ (Walboomers, 1994, p. 27). ‘Feelings of depression (are) always present in the background’ (Stern, 1994, p. 24). Depression associated with Parkinson’s disease has received significant attention the last three, four decades (Habermann, 1996). Depression is defined as “an unconscious, unhealthy response to a real or imagined loss with symptoms of lowered self-esteem, overwhelming feelings of helplessness, profound sadness, apathy, negativism, and guilt” (Lindgren, 1996, p. 352). Apathy in Parkinson’s, or better apathetic amotivational syndromes, are identified and studied by Shulman (2000) as clearly distinguishable from depression. Similarly Karlson et al. (1999) concluded that fatigue is a common but an independent symptom of Parkinson’s disease, overlapping with, but not causally related to, the concurrence of depressive symptoms. Lindgren (1996) made a clear distinction between chronic sorrow in Parkinson’s patients and depression, although both conditions have components of sadness. “In depression, the individual experiences self-emptiness and reduced self-regard.

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Such feelings are not a part of chronic sorrow. In chronic sorrow the losses surround the individual but do not consist of loss of self. Depression is characterized by reduced functioning of the individual, in contrast to chronic sorrow, which does not inhibit such functioning” (Lindgren, 1996, p. 352). In being a Parkinson’s patient, the subject remains the conscious carrier of the disease, at least usually and up to an advanced stage of the disease. Only then (and sometimes when medication is adjusted) someone’s thoughts, someone’s soul itself can be hardened as if a tree trunk tentacles into them and locks them in (Miller, 1995, p. 184). Apathetic amotivation, fatigue and chronic sorrow in Parkinson’s patients may be related or overlapping or even similar concepts, they all are described as common features of neurological degenerative or basal ganglia disorders (Karlsen et al., 1999, p. 237; Lindgren, 1996, p. 353; Shulman, 2000, p. 298). Lindgren refers to studies that document chronic sorrow in patients with multiple sclerosis. Toombs, herself suffering from multiple sclerosis, describes “the effortful nature of worldly involvement that is characteristic of incapacitating disorders (that) can engender a sense of fatigue” as “existential fatigue”: being in the world, “there is a powerful impulse to withdraw, to cease doing what is required. The person with a disability is tempted severely to curtail involvements in the world” (Toombs, 2001, p. 253). This can indicate how fundamental feelings of existential fatigue or existential sorrow may be in chronic degenerative disorders, at the same time however it raises the question how specific chronic sorrow will be for Parkinson’s disease. Although comparing several modes of being neurologically ill is passing beyond the aim of this research, we will develop this question further below. 3. Another significant feature of being a Parkinson’s patient is the caution and deliberation expressed in the afflicted body, its movements and the way the wellconsidered body constitutes a well-considered space, a well-considered world. This, too, deserves clarification. Here the existential paradox that characterizes the patient’s existence is bearing a name: “the paradox of the staircase.” It appears difficult for the afflicted body to measure the environment. How do steps of a staircase present themselves? Descending stairs is described as follows: ‘Now his new habit of leaning backwards means he keeps stretching his front leg out, feeling for the next step down, but holding his foot higher than the step he’s already on and too scared to lower it until I shout at him. (. . .) I have to shout him down every step’ (Harding, 2000, p. 307). However walking up and down the stairs spontaneously does

not appear to be impossible either. Sometimes the patient ‘takes’ the stairs as a matter of course, really paradoxically in view of the physical discomfort and loss of balance. Possibly these changing interactions with a spatial environment are determined by “cues.” Counting simply the steps could be considered as such cues, facilitating to seize the staircase (Stern, 1994, p. 13). Caregivers will see themselves challenged not only to administer intentionally the appropriate cues in living with Parkinson’s patients. But they act, they co-exist intentionally with the patients. 4. A typical phenomenon in Parkinson’s disease is freezing, which is described above as a sudden stiffness of the body in a space that cannot be constituted, a world that suddenly presents itself as unsurveyable. How characteristic is freezing for Parkinson’s? Toombs, describing her experiences of loss of mobility as a multiple sclerosis (MS) patient, relates about a case of sudden stiffness (Toombs, 2001, pp. 257– 258). She found herself “temporarily paralyzed” at the occasion of receiving her doctoral degree. She then could still walk a few steps if supported, and she could climb stairs with assistance. “The day before the ceremony, a colleague and I went over to the auditorium to practice climbing the few steps on the stage where I was to be seated. I negotiated the steps without too much difficulty. However, on the following day – in the concrete experience of about sixteen thousand eyes watching me – I was completely unable to lift my right leg. It was not just that I was conscious of the fact that my body moved in a particular fashion. Rather, I was temporarily paralyzed. No amount of willing resulted in a corresponding contraction of the muscles. I did eventually ‘drag’ my leg up the steps but my incapacity was much more pronounced than it had been the previous day when no-one was present in the auditorium” (Thoombs, 2001, pp. 257–258). Thoombs’ temporary paralysis as a MS patient appears different from freezing: she feels that her “spastic limbs become more rigid (. . .) in the experience of the Other’s ‘gaze’ ” (Id., p. 257). Being a MS patient is different from being a Parkinson’s patient, because the former is at an other world than the latter. This MS patient is stilling at a world that consists of sixteen thousand eyes, while the Parkinson’s patient deals with a life-world that is suddenly, inexplicable, irrationally, unsurveyable. ‘Existential paradox,’ ‘carrying a burden of sadness,’ ‘being in the world with deliberation,’ and ‘being suddenly confronted with a space that cannot be constituted, a strictly unsurveyable world,’ are all characteristic features of being a Parkinson’s patient. They have to be conceived and to be described as caring problems, in response to what adequate


and caring interventions must be elaborated and validated.

Acknowledgements The authors wish to thank Mrs. M. Tilly, member of the section Nursing Sciences at the Universiteit Maastricht, and R. Aalbersberg, chairman of the Landelijk Overleg Ziekte van Parkinson (LOP, National Council for Parkinson’s Disease), for their help with collecting literature. They also wish to thank R. Aalbersberg and A. Veltma, LOP-member, for their constructive comments on an earlier version of this article.

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