Bangalore: Dominique Saviour’s eyes rove aimlessly around the brand new office of the Parkinsons and Ageing Research Foundation (Parf) at the Microlabs Ltd campus in Kudlu Gate, on the outskirts of Bangalore. Flanked by sisters and nephews, Saviour, 40, attempts to make sense of questions addressed to him, but a part of his brain gives away.
Saviour suffers from a neurological condition called Parkinson’s disease (PD), which in the last 12-14 months has led to loss of speech as well as ability to walk and fully comprehend. His four siblings are showing other symptoms as well. Together they make a unique case for the biomedical community as perhaps the only family in the world that manifests different “phenotypes”, or physical traits, of this disease.
Chronic ailment: Dr Uday Muthane (extreme left) with his patients at Parkinsons and Ageing Research Foundation in Bangalore. He says the incidence of the disease doesn’t seem to be lower in India than in the West. Hemant Mishra/Mint
Specifically, the characteristic tremor, unsteady gait and slowed movement of Parkinson’s are accompanied by night blindness and loss of muscle control of another neurological disorder called ataxia. Saviour’s mother had PD, but his father was disease-free. However, due to consanguineous marriage within the extended family, five out of six children of this family from Krishnagiri district in Tamil Nadu have PD, with the younger siblings developing aggressive forms in their 20s.
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“This is a unique family. It proves that consanguineous marriage increases the severity of Parkinson’s; the different phenotypes don’t respond to drugs,” says Uday Muthane, a neurologist who has studied the family for many years, first at the National Institute of Mental Health and Neuro Sciences (Nimhans) and now at Parf. On his persuasion, the family donated Dominique’s younger brother Albert Saviour’s brain to the Nimhans brain bank when he recently succumbed to the disease at the age of 35.
After spending 15 years at Nimhans, Muthane realized two years ago that the disease was snowballing into a public health crisis and that he needed to do more, both in basic research as well as public outreach. He took charge of Parf and is now collaborating with the Sathya Sai Trust for rural screening in Karnakata. One of his chronic patients, the patriarch of the Micro group that owns the Rs1,000 crore pharmaceutical company Microlabs, offered initial support and infrastructure.
In 2004, a few PD patients pooled their resources to set up Parf. One of them, scientist-turned-entrepreneur S.P. Bhatnagar, who was diagnosed with PD at the age of 56 and has since then been managing the disorder as well as his company, Tech-Dry (India) Pvt. Ltd, sought the consent of the then health minister A. Ramadoss for setting up a multi-disciplinary research centre at Parf. Since then, the foundation has managed to get some donors on board but health ministry approval remains elusive.
Recently, Infosys Technologies Ltd chief executive Kris Gopalakrishnan joined the list of donors with his £400,000 (Rs3 crore) contribution to the foundation. He says his interest in supporting research in Parkinson’s and dementia arose because his late mother suffered from this. “Dr Uday Muthane is creating a world class research initiative for this in Bangalore and I thought of supporting him,” he says.
Age related? Not really
Often called an “age-related disorder” in which certain kinds of brain cells—nigral dopaminergic neurons—are lost with aging, Parkinson’s is now posing a puzzling question to neurologists in India. “We notice that Indians are getting this disorder at a rather young age, at 40-50 years, but we don’t know why,” says Madhuri Behari, head of the department of neurology at the All India Institute of Medical Sciences in New Delhi.
The research of Muthane and his colleagues has shown that nigral neurons are preserved in the brains of Indians, not decreasing with age as happens in Caucasians and some other populations. That, to some extent, explained why the incidence of PD was low in India, but the theory doesn’t seem to hold now. “As we study more, I don’t think we can say the incidence is lower in India than in the West,” says Muthane.
Does the cause lie in the genes? Neurologists have no answer, yet. “Genetically, what really causes this disease, is not known, though we do know it’s different from the Caucasians, Japanese, or even the Chinese,” notes Behari. She says research shows some abnormality in the oxidative function of the mitochondria (part of the cell that produces energy), but since scientists haven’t studied the brain, preliminary findings haven’t inched further.
Behari recently started clinical trials using bone-marrow-derived mesenchymal stem cells for PD on two patients, though her study requires 10 of them. “We’ll know the effect only after four to five months,” she adds.
But that wouldn’t even account for a drop in the ocean. Neurologists say there isn’t any epidemiological data to pin down a nationwide prevalence of this disease. Based on small studies, they estimate the occurrence to be 70-90 per 100,000. That is, 7-9 million people suffer from Parkinson’s in India, but doctors warn the number will soar as people are living much longer, with little or no awareness.
According to a Help Age India study, the elderly population in developing countries is likely to increase 200-280% in the next 20 years compared with just 30-40% increase in such population in developed nations. Separately, in a 2008 study of elderly homes in Bangalore, Muthane and colleagues found that while at least 40% of the people surveyed had some degree of Parkinson’s, less than 4% were aware of the condition.
Doctors say a greater challenge lies in the disease itself which has no cure and is often noticed by people when it reaches advanced stages. The high cost of treatment— Rs3,000-4,000 per month for early stage and upwards of Rs5,000 for advanced stage Parkinson’s—can also be a discouragement.
Deep brain stimulation—implanting a brain pacemaker at a cost of around Rs5 lakh—can relieve around 30% of patients, but less than 5% opt for this, says neurologist Rupam Borgohain at the Nizam’s Institute of Medical Sciences in Hyderabad, one of the centres that undertake the procedure. His centre is testing some new molecules, including safinamide from Merck, which show good results in Indian patients. But when launched, these drugs will come with a heavy price-tag.
Local studies on medicinal plants such as Vinka and Ashwagandha, have shown promising results. All the more reason for an intense research effort into finding some sort of therapy.
“The solution lies in looking for molecules in the indigenous medicine (system),” says Behari, who has tried, rather unsuccessfully, to collaborate with AYUSH for conducting clinical trials that conform to modern system of medicine. “We should now look for anti-oxidative properties of molecules in these plants.”
But AYUSH, the department of Ayurveda, yoga and naturopathy, unani, siddha and homoeopathy, which has obtained good clinical results from a plant called Mukuna pruriens (called Atmagupta in Sanskrit),?says it will confine itself to Ayurvedic dosage forms such as extracts or churnas. “We are not concerned with molecules since at that level it becomes allopathic,” said M.M. Padhi, deputy director (technical) at Central Council for Research in Ayurveda and Siddha in New Delhi.
Incidentally, to bridge this interdisciplinary chasm between chemistry and botany, Parf, when asked by AYUSH, submitted a Rs10 crore, three-year proposal for a self-sustaining “centre of excellence integrating Western and alternative medicine” in March 2005.
But the file lies forgotten somewhere in the corridors between the health ministry and the Prime Minister’s Office. To the latter, though, Bhatnagar doesn’t fail to send occasional reminders, sometimes even getting an acknowledgement.
Perhaps, India needs a celebrity push for Parkinson’s, just as the US got from actor Michael J. Fox.
“Whenever I get a chance, I look at the politicians very closely. I won’t be surprised if many of them suffer from this disease, but they just don’t come out and support the cause,” Borgohain says.