A Remarkable Power of Observation, Steadfastness & Empathy

James Parkinson(1755-1824) probably has a beautiful tree growing over him. That's what I'd like to think anyway; his gravestone was lost sometime in the past 195 years. The above is part of his memorial stone, erected by the Nursing Staff of St. Leonard's Hospital. He is the namesake for Parkinson's disease after his famous publication, An Essay on the Shaking Palsy published in 1817.

What was life like back in his times...200 years ago?

Now included in the London Borough of Hackney, the Shoreditch area of James Parkinson's time was a mix of agricultural fields, alehouses, iron-workers, tailors, leather workers, poverty, workhouses and asylums ('mad-houses' as they were titled then). This was north-west London; less than a mile from Whitechapel, where Jack the Ripper's murdering rampage started in the late 1800’s.

'His [James Parkinsons] home patch probably included most of the neighbourhood of Shoreditch and Spitalfields, including the neighbourhood that would later become famous from Arthur Morrison’s novel as ‘The Jago’ – the great slum which once existed around New and Old Nichol Streets, now buried underneath the Boundary Estate.' Spitalfields Life

Parkinson was a Doctor, Surgeon and Apothecary (Pharmacists who actually make their own medicines), founding member of the Geology Society, prolific writer (sometimes with the nom de plume 'Old Hubert' for his social reform papers), political activist, reformer and defender of the poor in times when consequences of rattling the government could have dire consequences.

What I find so utterly fascinating is how J.Parkinson, with all that he did, also described Parkinson's. This is no casual observation, but would have taken a great deal of painstaking observation and attention to minutiae. Excerpts from the 'Shaking Palsy':

Case 1: 'The commencement of the malady was first manifested by a slight trembling of the left hand and arm..'

Case 2: 'He had suffered from the disease about eight or ten years. All the extremities were considerably agitated, the speech was very much interrupted, and the body much bowed and shaken. He walked almost entirely on the fore part of his feet, and would have fallen every step if he had not been supported by his stick.'

Case 3: 'The agitation of the limbs, and indeed of the head and of the whole body, was too vehement to allow it to be designated as trembling. He was entirely unable to walk; the body being so bowed, and the head thrown so forward, as to oblige him to go on a continued run [festination], and to employ his stick every five or six steps to force him more into an upright posture, by projecting the point of it with great force against the pavement.' 

Case 4: '...who had first experienced the trembling of the arms about five years before. His application was on account of a considerable degree of inflammation over the lower ribs on the left side, which terminated in the formation of matter beneath the fascia. About a pint was removed on making the necessary opening; and a considerable quantity discharged daily for two or three weeks. On his recovery from this, no change appeared to have taken place in his original complaint.'

Case 5: '..the inability for motion, except in a running pace, appeared to exist in an extraordinary degree. It seemed to be necessary that the gentleman should be supported by his attendant, standing before him with a hand placed on each shoulder, until, by gently swaying backward and forward, he had placed himself in equipoise; when, giving the word, he would start in a running pace, the attendant sliding from before him and running forward, being ready to receive him and prevent his falling, after his having run about twenty paces.'

Case 6: '..He was scarcely able to feed himself. He had written hardly intelligibly for the last three years; and at present could not write at all. His attendants observed, that of late the trembling would sometimes begin in his sleep, and increase until it awakened him: when he always was in a state of agitation and alarm.'

It wasn't until 1967 that Hoehn and Yahr presented a clinical staging guide of the movement (motor) side of this disease. Their scale most certainly took the astute prowess of J.Parkinson's observations into account, yet Hoehn & Yahr left out the non-motor degeneration that J.Parkinson described.

Also in his paper, J.Parkinson attempts to separate other conditions for PD, surmises on causes, explores whatever treatment potentials, and defers to the account of others: here he cites Dr. Maty's account of the Count de Lordat, who had suffered head trauma some 3 years prior:

“A more melancholy object I never beheld. The patient, naturally a handsome, middle-sized, sanguine man, of a cheerful disposition, and an active mind, appeared much emaciated, stooping, and dejected....still walked alone with a cane, but with great difficulty...hardly perform any motion... his saliva was continually trickling out of his mouth, and he had neither the power of retaining it, nor of spitting it out freely. What words he still could utter were monosyllables, and these came out, after much struggle, in a violent expiration, and with such a low voice and indistinct articulation, as hardly to be understood but by those who were constantly with him. He fetched his breath rather hard; his pulse was low, but neither accelerated nor intermitting. He took very little nourishment, could chew and swallow no solids, and even found great pain in getting down liquids. Milk was almost his only food...'

It is extraordinary how James Parkinson deduced this plethora of symptoms were actually of ONE ever-degenerating disease. His accomplishment, 200 years ago, is not lost on others either: In the spring of 2014, Brian Hurwitz, the Professor of Medicine and the Arts at King’s College London, wrote a paper remarking on J.Parkinson's astute tenacity:

'James Parkinson’s  Essay on the Shaking Palsy (1817) has long been considered the foundational text of the disease which now bears the author’s name. This paper shows how the  Essay radically re-formulated a diverse array of human dysmobilities as a “species” of disease. Parkinson incorporated medical observation with a clear focus on patient experience and subjectivity in a deeply affecting narrative, fusing clinical and urban case-descriptions within the genre of a sentimental natural history. His detailed, diagnostic portrayal of the malady recast earlier descriptions of trembling, posture and gait disorder within a new narrative order, simultaneously recruiting reader involvement to the plight of sufferers. Hardly any clinical examination as we know it today undergirds what remains an exemplary account of disciplined medical witness. The  Essay demonstrates the potential of case construction and powerful, sympathetic case writing to transform clinical understanding of a complex medical condition of long duration.' Brian Hurwitz, Pub Med Central

J.Parkinson had a distinctly detailed style to his papers that revealed his empathy regarding the plight of suffering with duration. In those days, PwP (people with Parkinson's) probably would have died from* the disease in 10-20 years, depending on their status. Brian Hurwitz continues:

'That he “lamented” the man in Case V, a complete stranger he had observed only from afar, indicates that Parkinson both understood and felt for the man’s predicament, and wove such sentiment into his account, an account whose literary characteristics, in reflecting feeling, worked persuasively on readers.'

James Parkinson was a passionate man. Someone who truly understood his own position in life as one to be used in service to those who had been dealt a miserable existence; that's a sort of unconditional love uncommon these days, much less then. Prof. Hurwitz realized it:

'After a heated discussion at one meeting about whether Parkinson’s disease can be considered a neuropathological entity I turned to the  Essay for guidance and was transfixed by the power of the writing.'

...'I will focus on how the  Essay’s clinical phenomenology goes beyond the language of the ocular to include subjective perspectives on the effects of the condition, and on the way Parkinson characterized the natural history of the malady. 9 This supports a reading of the  Essay as a sentimental story—one which, through a poignant rendition, recruits the emotional and intellectual engagement of readers to the suffering that the condition causes, and which adds to the  Essay’s achievement and endurance as an exemplary medical text. 10'

So now, on the 200th anniversary (nearly) of James Parkinson's 'Essay', I applaud him; this man of compassion, keen observation and altruism. It can't have been easy, his time, his life. As you see by his memorial plaque, his 'Essay' was not acknowledged then; few realized its importance.

I will end by saying that he's no doubt empathetic to the endeavors by so many researchers, Innovators, Neuro-noggins' to cure this malaise, but I'd bet he's also more than a little sad at the 'industry' it's become. He would be hell-bent to look for a cure - maybe he could have helped in its development. He certainly had what it took; perseverance driven by compassion.

To all those striving, fighting, losing, winning...in this battle with Parkinson's; I am with you and grateful beyond words. For me & my hubby now 18-years encapsulated with PD, I tire....sorry. I wasn't cut out to spent what will probably be 30 or less years as a care-giver/carer. We've been together for 40 years already...I was 17 when we started dating :)

And we've made some headway in government-nudging: MP Nick Thomas-Symonds & Gaynor Edwards of Spotlight YOPD had a FINE start at House of Commons and I know Dr. Maria De Leon & MJFF are getting ready for more battles Stateside - so many warriors there. Gaynor has Parkinson's; almost 5 years now. She is a joy and privilege to work with. She's taken every penny (and every ounce of strength) to fight for so many YOPD (young onset Parkinson's) - that's compassion. Smart, sassy, wickedly funny and caring beyond measure, she has my loyalty. I want my young friend to have a full life with all the potential granted effortlessly to the most of us.

And, I don't want to hear one of our adult kids call us to tell us they've got it....

I think there may, one day, be a cure. But I would need the unending patience, compassion and sheer will-power of James Parkinson to see it.

* my little dig at the statement bantered about in the world of Parkinson's these days: 'you don't die from it; you die with it.' Semantics....

RIP James Parkinson.