A Neuroscientist’s Reconstruction of Father Stan Swamy’s Last Days

I write this as a physician and a citizen of this country. I spent sleepless nights over the news of the rapid progression of Parkinson’s disease in Fr. Stan Swamy during the months leading to his passing away last month. This note is a reflection of the urge I have felt to piece together such information about Fr. Swamy’s medical condition as I have been able to find in the media or has entered the public domain after his demise.

I have felt called upon to do this in my capacity as a clinician-clinical researcher with several decades of experience in combining expertise with humaneness in caring for patients with the progressive neurological disorder called Parkinson’s disease (hereafter, PD). I hope this will serve the purpose of enabling more people to empathise, in a better-informed fashion, with a member of a family or neighbour with PD, even as they are invited to comprehend my attempt to present the clinical history and the probable diagnosis of Father Swamy’s clinical condition.

What is Parkinson’s Disease?

PD is a neurodegenerative disorder involving what are known as the dopaminergic cells in a specific area of the brain. The most striking features of PD are related to movement: bradykinesia (reduced mobility), tremors, rigidity, and gait disturbances and postural imbalance However, some patients may manifest more tremors (tremorogenic form) and less of the bradykinesia/akinesia and rigidity (akinetic–rigid form), though there is an overlap, with a greater or less representation of either form. The tremorogenic form might be less complicated, as one could use a sipper to avoid spilling liquid while drinking and put one’s hands into one’s pocket if one finds the need to avoid the awkward public gaze. The akinetic-rigid form, however, is more disabling, and can result in difficulty in initiating movement involved in gait, writing and speech, in midway freezing of movement, or even in frequent falls.

Non–motor (non-movement) aspects of PD

Over years of keen clinical observation and research in PD, it was brought to focus by experts that the deficiency of the principal neurotransmitter, dopamine, extended in PD beyond the more obvious feature of deficits related to movement, to encompass cognitive ability, psychiatric disturbances, and autonomic nervous system symptoms (the last controlling involuntary function of internal organs,heart rate, respiration, etc.). Let us consider these features of PD, one by one, as they probably related to Fr. Swamy’s condition.

1. Motor

Fr. Swamy, in his own words, was ‘functional’ before his incarceration. Being peaceable and imbued with high motivation for his life’s mission, he could overcome with little ado the burden of advancing years, deafness, low back pain (PD rigidity being partly responsible for it) and hand tremors. He could attend to activities of daily living (ADL) without support: walk, bathe, eat, write, as he himself stated. He probably had the tremorogenic form of PD, and Ciplar, which he was prescribed at Ranchi, was for tremor control. The other medication prescribed, PKempt (Triphenhexidyl), was to partially reduce the rigidity and also tremors. Was Mysoline (an anticonvulsant) prescribed for its sedative action? There is no indication of Levodopa (dopamine precursor) therapy in this prescription.

2. Cognitive

He was cognitively sound, with good insight, as his video prior to being jailed indicates. He had clear awareness of his deteriorating health, and the need to depend on his companions in jail for help even with walking, eating, bathing or performing other basic ADL. He asked for hospitalization when conditions worsened further, tested positive for Covid-19, developed lung complications and was on the ventilator at Holy Family Hospital, Mumbai, for two days prior to his death, recorded as due to cardiac arrest.

3. Psychiatric

As his colleagues indicate, Fr. Swamy showed mounting anxiety when repeated bail pleas brought no positive results. He was motivated enough to want to go back to his own people at Ranchi. He was aware that the end was drawing near as he experienced a steep decline in his health. To the end, his concern was for adivasi rights.

Did Fr. Swamy have PD psychosis (PDP)? Did he have visual or somatosensory hallucinations or delusions? This is not clear. One gets the impression that he was given ‘Ole 5’ (Olanzapine) over a prolonged period. PDP may be caused by the anti-PD medication or due to the disease process itself. Therefore, anti-PD medication must first be rescheduled/reduced and antipsychotic drug administration should be considered only if this change in schedule does not reduce PDP symptoms, and not as a first line treatment for PD or PDP. Olanzapine is one of the five new generation atypical antipsychotics. Atypical antipsychotics in PDP require close monitoring of the patient’s condition. The use of Olanzapine in PDP is controversial: it is what is called a ‘dopamine-serotonin receptor antagonist’ with the side-effect, on prolonged use, of causing dyskinesias (involuntary abnormal movements) to add to the suffering. It is certainly not the drug of choice for PDP. Quetiapine is the preferred atypical antipsychotic in India.

4. Autonomic nervous system

Autonomic disturbance in PD accounts for slowing of the functioning of internal organs or other dysfunctions, the most common symptom being severe constipation due to reduced digestive tract motility. There may be postural hypotension (sudden fall in blood pressure on standing from a sitting or lying-down position), with accompanying giddiness or fainting, which can transiently reduce the blood supply to organs. Sleep disturbances may be severe. Cardiovascular and respiratory disturbances also occur. PD is a slowly progressive condition. It does not kill, but the complications do. Falls with serious trauma, head injury in particular, and pneumonia are the two common complications that can result in death.

Perhaps these provide some of the answers to Fr. Stan Swamy’s desperate questions. But alas too late! He wanted to know: Why was there so much decline in health and increasing disability over the seven months of his incarceration as against his long-term PD features, with which he had coped well? The severe stress situation can hardly justify the rapid decline.

Towards a probable diagnosis

The simple, basic treatment regimen started at Ranchi by the specialists was based on the common diagnosis of the elderly (male in particular) with Fr. Stan’s symptoms: Chronic progressive, idiopathic PD.

What clinical proof do we have that father’s condition was chronic (long term) and progressive (with symptoms progressing)? It is known that tremors and rigidity in the PD patient are invariably asymmetrical in onset. They start on one side, and the other side of the body catches up after a span of time. The observation that Fr. Swamy had bilateral tremors (and rigidity) points to the probable prolonged course of Fr. Swamy’s PD, with the tremors starting in one hand initially and involving the other hand after a period. The term ‘idiopathic’ suggests that the Parkinsonian symptoms are primary and not due to a secondary cause. 

The management of PD and Fr. Stan Swamy’s health

The management of PD, as one of the commoner disorders of the elderly, has been fine-tuned in the allopathic system of medicine and I feel compelled to touch on it briefly here.

The patient’s clinical history and examination guides the specialist on the probable diagnosis. In most cases of PD, modern diagnostic tools may be employed to clinch clinical diagnosis. Several specific assessment scales are employed, which can occupy over one hour to record comprehensively. Re-evaluation of the patient on the assessment scales at patient follow up and comparing them with the earlier scores will show the level of progress of the disease .and allied health parameters. They are of prognostic value and guide the treatment regimen.

Globally validated PD assessment scales are used as the index to record the stage of illness and degree of physical, mental, psychological disability and dysfunction through the Unified Parkinson’s Disease Rating Scale (MDS-UPDRS, 2008). On another simpler purely motor PD scale, (Hoehn and Yahr Scale, 1967) Fr. Swamy would probably have been insstage 2 or 3 of PD, seven months ago. (Stage 5 being the most severe stage.)

The depression assessment scale (assessing the level of depression as the name suggests) and quality of life assessment scale (related to the health condition and social environment), and the Frailty Index scale (frailty being measured as a sum of eight core frailty indicators: weakness, fatigue, weight loss, low physical activity, poor balance, low gait speed, visual impairment and cognitive impairment) would probably have shown a rapid downward trend in scores over seven months.

New drugs, neuro-rehab measures, patient and family counselling and technologically advanced treatment modalities are available (the last not so affordable). Combining these with a humane approach and taking into consideration features peculiar to the Indian context, in particular our family/community support system, the PD patient can lead a moderately comfortable and productive life for well over a decade, and maintain a level of independence, dignity and self-respect.

A pity—a deep and unerasable pity—that Fr. Stan Swamy, in his last days, was denied scientific and humane healthcare, a basic human right and requirement of social justice.

Subbulakshmy Natarajan

The writer is a clinician-neuroscientist and Adjunct Faculty, Public Health Foundation of India. She lives in Bengaluru.