More personnel imperative to assist in stroke rehabilitation in India

Dr Sharath Krishnaswami, Senior Resident-Department of Neuroanaesthesia and Neurocritical Care, Paras Hospitals talks about the devastating effect of Stroke on a patient’s life. This is significant because a growing number of people across the world are victim to cerebrovascular accidents and its effects need to be highlighted

Jean-Dominique Bauby ¹ scanned the pages of the first draft of the Elle Magazine ² in the year 1991³. His eyes sifting through pages of text and exquisitely crafted photos of models that defined the era and was to influence fashion, not only in France but the world. Women would look up to its ideals, seek out trends that most defined their spirit and walk in confidence in a world that was dominated by men. A magazine that now has 45 editions around the world and 46 local websites not to mention 21 million readers and 100 million unique visitors per month. A staggering number considering its origins in 1945 by a writer couple. ²

He sought out stories that upheld the spirit of the woman. His fine sense of style drove him to handpick poses by models that made a mark, and would further inspire thousands of readers of the boomer generation. Little did he know that his position as Editor-in-Chief of the Elle Magazine at the turn of the century, would inspire a movie in 2007- “The Diving Bell and the Butterfly”. ^4,5

But all of his work would come to naught by an event which would change his life.

His eyes could no longer transform thought to action. His hands could no longer choose designs that would influence a generation and his fingers could no longer shape the directions of his work. He was confined motionless in the hospital bed due to Locked-In Syndrome. ⁶ An ischemic stroke of the basilar artery supplying the ventral pons ⁷ would render him incapable of everything but cognition, vertical eye movement, blinking, and hearing. ⁶

His life then, could be likened to the heavy metal diving suit. He would slowly sink into the abyss of the ocean, unable to move, unable to speak, and unable to emote.

But the human spirit is remarkable. And relentless. By communicating with his left eyelid, the only part of his body that was spared alongside with his mind, Bauby interlaced fragments of his story together to narrate what it was like to be living in an inanimate body. ⁸ He would later communicate with the nurse who picked up signs that he was trying to say something, and his thoughts would soon be documented into a memoir, “The Diving Bell and the Butterfly”, published in 1997. ⁹

This brings us to the debilitating effect of a Cerebro-Vascular Accident. According to the India stroke factsheet updated in 2012, the estimated age-adjusted prevalence rate for stroke ranged between 84/100,000 and 262/100,000 in rural areas and between 334/100,000 and 424/100,000 in urban areas. ¹⁰ 11 per cent of the above were fortunate to undergo intravenous thrombolysis. And for those who don’t undergo thrombolysis, rehabilitation would follow. Lack of personnel forms a major reason why stroke rehabilitation is not well developed in India. It is disheartening to know that organised rehabilitation services exist in the country but only to serve the privileged in the metropolitans. ¹⁰

Statistics aside, the field of Neuroanaesthesia and Neurocritical care is in its infancy, with a cadre of Residents emerging from various Institutions across the country. ¹¹ The personnel armed with employing techniques and tools to identify and intervene in pathologies that can cause further harm to the patient, seek to stabilise and help the patient recover at the earliest. A result of conforming to rigorous processes and evaluation methodologies. ¹²

And yet, there exists a disconnect. What are we trainees missing in the armament of scoring systems and diagnostic devices? What are we doing to fill the gap between trying to push the patient to re-establishing motor function and recruiting enough alveoli so that the patient can breathe freely?

What can we do to reach out to the depths of a sinking patient to revitalise his desire to live again?

The French philosopher René Descartes (1596-1650) argued that the natures of mind and body were completely different from one another and each could exist by itself.^{13, 14} A major question arose from this mind-body dualism theory: how could these two structures with different natures causally interact in order to give rise to a human being with voluntary bodily motions and sensations?

Admittedly, a difficult question to answer given our goal directed work and the implications of neuropathology.

But let me lead you to an excerpt from his book about how he received a bath as a ‘locked-in’ person:

I can find it amusing, in my forty-fifth year, to be cleaned up and turned over, to have my bottom wiped and swaddled like a newborn’s. I even derive a guilty pleasure from this total lapse into infancy. But the next day, the same procedure seems to me unbearably sad and a tear rolls down through the lather a nurses’ aid spreads over my cheeks. And my weekly bath plunges me simultaneously into distress and happiness. The delectable moment when I sink into the tub is quickly followed by nostalgia for the protracted wallowings that were the joy of my previous life. Armed with a cup of tea or a Scotch, a good book or a pile of newspapers, I would soak for hours, manoeuvring the taps with my toes. Rarely do I feel my condition so cruelly as when I am recalling such pleasures. (p.24) ⁸

The helplessness with which Bauby describes his state of being, intermixed with his sheer spirit in effusing vibrancy into his writing makes one think. Does communication begin and end with giving commands at the work place?

Communication undoubtedly, has various dimensions, and we have a long way to go to find areas where civil discourse exists in professional spheres in the medical field. ¹⁵ But these limitations shouldn’t impede the spirit of discovery and the drive for innovation.

At the turn of the decade when COVID ravaged through the country, we must not forget that Bauby coped with the sense of loss of control by letting his ‘mind taking flight like a butterfly’, indulging in his own imagination and recollection of things past. ⁸

Perhaps we scientists must put our imagination to good use in our restrictive work spheres.

References:

1. https://en.wikipedia.org/wiki/Jean-Dominique_Bauby

2. https://en.wikipedia.org/wiki/Elle_(magazine)

3. https://www.bookreporter.com/authors/jean-dominique-bauby#:~:text=Jean-Dominique%20Bauby%20was%20born,magazine%20in%20Paris%20in%201991.

4. https://www.youtube.com/watch?v=TPlcQfglFJg&t=125s

5. https://www.allencheng.com/the-diving-bell-and-the-butterfly-book-summary-jean-dominique-bauby/

6. M Das J, Anosike K, Asuncion RMD. Locked-in Syndrome. [Updated 2022 Jul 25]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK559026/

7. Laureys S, Pellas F, Van Eeckhout P, Ghorbel S, Schnakers C, Perrin F, Berré J, Faymonville ME, Pantke KH, Damas F, Lamy M, Moonen G, Goldman S. The locked-in syndrome : what is it like to be conscious but paralyzed and voiceless? Prog Brain Res. 2005;150:495-511. doi: 10.1016/S0079-6123(05)50034-7. PMID: 16186044.

8. Law, K. K. (2011). “Exploring ‘Locked-In Syndrome’ Through the Case of Jean-Dominique Bauby.” Inquiries Journal/Student Pulse, 3(03). Retrieved from http://www.inquiriesjournal.com/a?id=418

9. https://en.wikipedia.org/wiki/The_Diving_Bell_and_the_Butterfly

10. Pandian JD, Sudhan P. Stroke epidemiology and stroke care services in India. J Stroke. 2013 Sep;15(3):128-34. doi: 10.5853/jos.2013.15.3.128. Epub 2013 Sep 27. PMID: 24396806; PMCID: PMC3859004.

11. Khandelwal A, Jangra K, Katikar MD, Durga P, Maheswara Rao GSU. Choosing Neuroanaesthesia as a career: Marching towards new horizons. Indian J Anaesth. 2021 Jan;65(1):35-42. doi: 10.4103/ija.IJA_1531_20. Epub 2021 Jan 20. PMID: 33767501; PMCID: PMC7980245.

12. Moheet, A.M., Livesay, S.L., Abdelhak, T. et al. Standards for Neurologic Critical Care Units: A Statement for Healthcare Professionals from The Neurocritical Care Society. Neurocrit Care 29, 145–160 (2018). https://doi.org/10.1007/s12028-018-0601-1

13. Descartes R. The Philosophical Writing of Rene Descartes. 3 vols. Cottinghma J, Stoohoff R, Murdoch D, Kenny A, trans. Cambridge, UK: Cambridge University Press: 1984-1991 [Google Scholar]

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