Overview

This book is an eloquent testimony to the turmoil and torment that neurodegenerative diseases impose on their sufferers, and the fierce determination of those afflicted to fight back. Written by a cardiologist who developed Parkinson’s disease at the pinnacle of his career, the book is an affirmation of his resolve ‘not to let the disease define me, but to live as fully as I can within the limitations imposed’ by it. As he heartbreakingly portrayed how ‘Parkinson’s chips away, bit by bit, at your humanity and the sense of normality that all seriously ill patients crave’, the author also conveyed the profound sense of loss the disease inflicted on his career and relationships, and the feeling of ‘public humiliation‘ it engendered. The often philosophical narrative also explored how the author finely balanced the will to live life to the fullest against the ‘reality of life with a progressive disease’ that constantly ‘lurks like an unwanted shadow‘ – a situation he referred to as ‘a knife-edge ridge I walk’. And just as he regarded the endeavour of writing the book itself as ‘an act of defiance’ against PD, he also conceived of it as ‘a logical extension’ of his medical career, and as ‘the only way I know to continue, in a sense, to be a doctor’. And beyond the personal reasons for writing, the author also had the laudable altruistic goal of providing comfort for ‘those struggling with diseases that steal control of mind or body‘ (pages xvii, xx-xxii, 2-3, 6, 9, 58, 77 and 82).

Synopsis

The book’s excellent portrayal of Parkinson’s disease effectively captured the picture of the disorder’s classical onset symptoms, and its inexorable progression. For example, the author described how his disease started with resting tremor, and how he subsequently developed such defining features as an expressionless face and shuffling gait. He also referred to the stooped and stiff posture his body assumed, describing how he is frequently ‘hunkered down, head bowed, shoulders slumped,’ and how his ‘once-fluid body‘ and ‘once-graceful gait‘ were replaced by rigidity and ‘an old man’s shuffle‘. He movingly referred to how he became ‘trapped in a body that no longer fully responds to my will’, illustrating this with how, on waking up in the morning, he lies ‘entombed‘ in his body until the ‘paralysis of mind and body’ passes. He metaphorically referred to having to wait ‘for thousands of tiny cellular engines to start themselves’, and for ‘enough synapses (to) spring into action to allow me to move’, before he can ‘begin another day’. The author also explained that Lewy body disease, the type of Parkinson’s disease that plagued him, takes a heavier toll than the classical form because its ‘progression is variable and unpredictable‘, and it ‘can cut life short and dramatically affect quality of life‘ (pages xviii-xix and 3-6).

The pervasive impact of Parkinson’s disease on normal daily activities also formed a harrowing theme of the narrative. In conveying the repercussions of these restrictions, the author described how even the ‘most routine tasks‘ required him to pay ‘a level of attentiveness and concentration‘ which he said he previously ‘reserved for the treatment of seriously ill heart patients’. For example, he described how ‘the simple act of dressing‘ became a complex task, how his walking was interrupted by freezing of movement, and how his handwriting became smaller, a phenomenon called micrographia. As he gradually ‘lost the ability to navigate in unfamiliar places’, the author also said ‘the space in which I roam’ became progressively smaller, his limitations reducing his inhabited space into an ‘ever-shrinking physical world‘. Beyond his restricted movements, the author also referred to how the disease altered ‘the entire architecture‘ of his face and body, leading to ‘an acute self-consciousness that I never had before’; this, he said, triggered a powerful ‘need to assert myself physically’ which he admitted was partly driven by vanity. Another symptom he emphasised was the ‘profound’ impairment of his sexuality; referring to this as ‘the forgotten part’ of the disease rarely raised by doctors, he stressed that ‘sexual intimacy can be especially meaningful and a vitally important quality-of-life issue’ for people with Parkinson’s disease (pages 6-9, 14-16, 56, 146, and 150-155).

The experience of the non-motor symptoms of Parkinson’s disease was perhaps the most enlightening theme of this illness narrative because it highlighted a poorly-appreciated, but equally disabling, dimension of the disorder. Remarking that the disease ‘permeates every aspect of my being’ and spares ‘no major function of mind or body‘, the author illustrated this with how he endured a panoply of cognitive symptoms which ranged from early occasional forgetfulness, which he misattributed to the grief of losing his wife, to an ‘all-encompassing mental and physical slowness’. Illustrating why his memory problem constituted ‘the hardest symptom of my disease to live with and the hardest to accept’, the author described how his ‘train of thoughts regularly runs off the rails’, how he struggled to organise his thoughts, and how ‘mental lapses constantly punctuate my day and tear at my self-esteem‘. He also depicted how he often found himself ‘lost momentarily in my own house, or forget where I was going, or why’. Deploying helpful metaphors, the author likened his day-to-day cognitive deficits to a descending veil, and to a ‘night canopy over a birdcage’, and he compared the depletion of his knowledge to ‘a glacier cleaving huge chunks of ice into the sea’. Other non-motor symptoms the book described included drooling, slurring, whispering speech, nightmares, violent sleep, depression, and an ‘out of control’ thermo-regulatory system (pages xviii, xx, 1-7, 10-12 and 22).

His denial of the diagnosis of Parkinson’s disease, and of the limitations it imposed on him, was a pervasive feature of the author’s story, and this was particularly evident in his misguided determination to carry on working as a doctor even after the disease had become startlingly evident. For example, recalling that he became set on ‘fighting for my job as though I were fighting for my life’, the author said he went to great lengths to hide ‘the reality that was unfolding within’, such as by using ‘offhand remarks‘ to conceal his mental lapses. And as his disease progressed, his efforts at concealment became even ‘more desperate’ as he tried to camouflage such critical difficulties as indecisiveness, disorientation and confusion. Admitting that his ‘extraordinary level of denial’ was ‘unjustifiable‘, ‘patently unfair‘, and ‘fraudulent, the author referred to it as ‘the elephant in the room‘ that ‘everyone saw but few acknowledged’, and as the cause of ‘apprehension, grief, sadness, and fear‘ all round. Another disruptive emotion the author explored was ‘pervasive’ anger, and he narrated this especially in the context of his ‘losses’ within the family setting. For example, he referred to such marital sources of frustration as his ‘inability to share equally in the tasks…of daily living’, a situation which leaves him ‘feeling useless and inadequate‘. He however argued that ‘between the limbo of illness and the anger and despair it often spawns, there is …a life beyond illness still to be lived’, and he advocated measures to maximise this, such as finding ‘a safe place…to unburden yourself of anger’ (pages xix, 16-17, 23-38, 42-56, 84-85, 157-162, 177-178, 181-182, 185).

The most helpful theme for healthcare practitioners is the book’s reflective exploration of the nature of the patient-doctor relationship, a discourse which benefited from the author’s experience of both sides of the divide. Drawing from his own practice, the author urged doctors to form ‘deeply personal‘ relationships with their patients, arguing that ‘such deep engagement…is therapeutic for the patient and an invaluable aid to the doctor’. Remarking that he saw every patient as ‘a window into the human condition‘, he reminded physicians that they are ‘privileged by all patients who entrust themselves to his or her care’. Maintaining that patient care should go beyond tests and treatments, he further portrayed the patient-doctor relationship as one in which there was ‘a sharing of fears and hopes, anxieties and triumphs‘. It is with this perspective in mind that said he wanted his own neurologist to understand him and his disease ‘inside out‘, and to recognise that patients like him who are facing ‘an existential and spiritual crisis, not just a medical one’, do not just want a doctor with ‘cold clinical efficiency‘, but one who is also ‘something of a philosopher‘, a guide, and a comforting presence‘. He further described his ideal doctor as one with whom they would ‘brood over my situation together’, and one who would be ‘thinking about my case’ when he learns new things about the disease (pages xxi, 20 and 59-64).

Opinion

This is a very graphic and enlightening depiction of a physician’s travails in the clutches of a life-altering disease. It is not just an illness narrative of a severe and rapidly progressive form of Parkinson’s disease; it is also a story of how a dedicated physician sought to continue his service to patients even when this was not possible in the conventional patient-doctor relationship. The book conveys the full impact of a horrendous disorder, exploring its debilitating physical afflictions, and highlighting its psychological and social tribulations. The prose is particularly enhanced by the striking metaphors the author deployed to characterise the almost endless ways in which Parkinson’s disease torments its victims. The book also provides a broad range of strategies to cope with the individual and inter-relational complications that emerge at different stages of the disease. Apart from the occasional errors in defining such terms as bradykinesia, this is a factually correct and enlightening representation of a complex disease.

Overall assessment

The lessons of the book for healthcare goes beyond its eloquent depiction of a progressive neurological disease to encompass insights into the value of engaging deeply with patients. The book succeeds in conveying the different perspectives of the disease, and the ramifications it has on all aspects of life. It particularly teaches how patients and their families cope with a progressive neurological illness, and it highlights those aspects of the disease that affects them the most – a valuable insight for all healthcare practitioners. By its comprehensive depiction of the clinical and social aspects of the disease, and by its exploration of the ingredients of a therapeutic patient-doctor relationship, the book symbolises the concerns of all those with serious illnesses, and I recommend it to all doctors.

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