A crippling disease: Experts dispel myths associated with Parkinson’s disease

Lament lack of facilities for patients in Pakistan.

KARACHI: "He has isolated himself; stays in his room and doesn't talk to us," the family member of a Parkinson's patient, told the doctor. The doctor advised them to give him good quality time, even if it was for 30 minutes a day. "Embrace him, hug him, make him feel loved," she recalled saying to them.

In the next meeting, the family told the doctor that the patient had sexually assaulted the granddaughter. Dr Quratul Ain Khan shared this story with Parkinson's patients and their families as part of her presentation at the Aga Khan Auditorium on World Parkinson's Day.

"It is important to devise a schedule or to keep them busy," she told the families and caregivers present in the audience. "They need something to look forward to at the end of day." The discussion not only focused on Parkinson's patients and the disease but also the challenges faced by caregivers, their stress and suggestions on how they can help the patients better.

"Parkinson's affects one out of every 23 people over the age of 40," explained M Irshad Jan, the director of Pakistan Parkinson's Society (PPS). "These cases are expected to double in China and the subcontinent over the next 15 years." Dr Khan explained that the expected rise in the number of cases was not associated with genetics but due to the population density and longevity of life.

"We can treat and control the symptoms to a certain extent but there is no cure for Parkinson's," said Dr Mughis Sheerani, a neurologist at the Aga Khan University. Listening to the discussion, a son held his father as he drank water, constantly shaking because of the disease.

In another corner, another shivering patient sat on the wheel chair to leave, with the help of three people as his urine bag hung on one side.

Dr Mariam, a speech-language pathologist said that 89 per cent of Parkinson's patients have speech and swallowing difficulties. All the muscles of the body grow weak due to the disease." Dr Mariam dispelled the myth commonly associated with the disease that it affects only the central nervous system.

The founder of Pakistan Parkinson's Society, Haroon Bashir, sent his message of positivity through the director. "Let us continue cultivating hope", he said. His organisation, the PPS, arranges a support group meeting every month at AKU for Parkinson's patients.

Issues in Pakistan

"The number of neurologists in Pakistan who can treat this condition is very limited and they are overburdened", said M Irshad Jan. The problem is that the first point of contact for a Parkinson's patient is a general physician and a general physician does not have enough information or time to handle the case appropriately.

The patients are not told about self-management and there is not enough awareness in the country regarding the disease. He also stressed for the establishment of Parkinson's movement disorder clinics and centres across the country.

Published in The Express Tribune, April 12^th, 2015.