Awareness about Parkinson's disease on shaky ground

Parkinson's is an incurable progressive condition of the brain. It affects movement, speech and balance and causes incessant shivering of the face and limbs. Genetic and environmental factors are believed to contribute to the degeneration of brain cells that maintain bodily movement. There is no particular test to detect the disease, with only physical symptoms enabling doctors to make a diagnosis.

After 15 years of suffering and two failed stem cell transplantation surgeries, a 68-year-old businessman finally decided to undergo surgery on the eve of World Parkinson's Day at Jaslok Hospital. According to the doctors, the businessman, who is from Gujarat, had uncontrolled Parkinson's disease (PD) and was lured by the temptation of finding a 'cure' for the disease.

"He was lured by the temptation of finding a 'cure' for Parkinson's disease he underwent intracranial stem cell transplantation (a neurosurgical procedure) in Bangalore. As he did not obtain any benefit, he was given a 'top up' by the intravenous stem cell route. Obviously, none of these worked and his disease progressed," said Dr Paresh Doshi, Director, Neurosurgery Department at Jaslok Hospital.

As the disease progressed, Jain decided to go for deep brain stimulation (DBS) surgery, a standard surgical treatment for PD. "He had unbearable stiffness and discomfort and was taking large doses of medications. With the disease being in an advanced stage, DBS surgery was the only option," said Dr Doshi.

Since Jain had already undergone two operations, the team of neurosurgeons had a tough time executing the surgery. "Jain's case was tricky as the area we were interested in had already been operated on. Advanced technology and expertise helped us find our way into the brain and successfully accomplish the surgery," said Dr Doshi.

While Jain is now recuperating at the hospital, Dr Doshi said he is a classic example of poor awareness on PD. "The important message to convey is that stem cell treatment is a still at the laboratory stage. It can be tested on humans only after careful animal experimentation. So far, the efficacy of the stem cell therapy hasn't been proven and people shouldn't get misled," he said.

Neurologists say PD affects roughly one lakh people in India most of them over the age of 50, although it can sometimes affect younger adults. Awareness about the disease is a must in India, as the number of PD cases affecting those over the age of 60 are increasing sharply. "Parkinson's affects one in hundred individuals. While 55 crore Indians over 60 were afflicted in 2013, the number is estimated to triple to 160 crores by 2050. By then, over 22% of the Indian population will comprise of the elderly. It is therefore important to have more awareness on management of the disease," said Dr Doshi.

Dr Maria Barretto, CEO of Parkinson's Disease and Movement Disorder Society (PDMDS), which has twenty support groups in India including in Mumbai, Nasik and Baroda, agreed on poor general awareness about PD. "At PDMDS, we conduct various programs to spread awareness on the disease among both caregivers and the patients," she said.

Dr Charulata Sankhla, neurophysician at PD Hinduja Hospital who is also part of PDMDS, said that PD cases may be underreported due to lack of awareness. "Patients come to us very late because they don't recognise the symptoms. PD has to be diagnosed early, and it is very important to keep the patient active to ensure s/he has better mobility and a longer life."

Talking about surgery intervention, Dr Sankhla added that doctors would earlier wait for 5-6 years before taking a patient for surgery. However, surgery is being opted for in 3-4 years post the onset of PD. "Patients need to approach neurophysicians at the earliest so that it can be determined which stage of the disease the patient falls in. Treatment and surgery are recommended accordingly."

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Awareness about Parkinson's disease on shaky ground