Parkinson’s disease remains a mystery in modern times

Parkinson’s disease remains a mystery in modern times

Composure qualms

Rahul Dixit (left) and Nikhil K.B., two students from the R.V. College of Physiotherapy demonstrate exercises to ease the effects of Parkinson’s Disease, in Bengaluru on April 11, 2019.

Aisha Siddiqa (36) shudders violently in her seat, barely able to keep her composure.

“Her nervousness makes her tremors worse,” said her husband, Shakeel, explaining that the violent convulsions brought on by Parkinson’s disease often leave eyewitnesses terrified.

Little surprise then that the symptoms were once confused for demonic possession and are still attributed to supernatural sources in rural areas, explained D N K Venkataramana, the chairman of the Neuro-Spine hospital, Brains.

“Diagnosis of Parkinson’s often happens late in India because people don’t go to hospitals,” Dr Venkataramana said. “This is because they are confused by the condition and end up attributing things to it, such as alcoholism and possession.”

Aisha’s condition took nearly two years to diagnose, following a raft of erroneous determinations by doctors who initially suggested that she was suffering from psychosis. Eventually taken to the National Institute of Mental Health and Neurosciences (Nimhans) for a psychiatric assessment, Aisha said that she was stunned to discover that the doctors had diagnosed her with Parkinson’s.

“We had never heard of the disease,” Shakeel said.

This sense of befuddlement was echoed by Shantha Jayaram, a singer who, at the age of 59, started to realize that her voice was losing its cadence. Soon, her children were pointing out the strange slowness of her movements. “I was stunned to discover that I had something called Parkinson’s, even though I mostly felt fine at the time,” she said.

That was 10 years ago. Now, Jayaram has a bent gait and suffers from bouts of intense pain several times a day. Her voice lacks the range it previously had.

Medical professionals estimate that 6.3 million people around the world are currently living with the disease and that in the past 20 years, it has grown from 20 sufferers per 15 million people to 1,000 per million.

In India, studies estimate that there are 14 sufferers per 1 lakh people, although as Dr Venkataramana said, no one really knows how many Indians are affected because of the lack of a comprehensive study.

To fill in this data gap, the Basal Ganglia Support Group, an organisation made up of Parkinson’s sufferers and citizens has been attempting to locate afflicted people in the neighbourhoods. The group has 160 chapters across Karnataka.

Dr Venkataramana said that with the group’s help, Karnataka can expect to see comprehensive figures within two years.