With not much information or support, those who care for patients with Parkinson's disease find themselves struggling. People involved with the few support groups in India talk about what more needs to be done.
Like many other caregivers, Vidya Sagar juggles his research job with looking after his 76-year-old father who suffers from Parkinson's. “I wish I could learn more about the disease. Do you know of any caregiver's forum or society?” he asks. “I come back by 6.30 p.m.; a maid takes care of him till then.” His only point of information is the research wing at the Department of Neurology, Nizam's Institute of Medical Sciences, Hyderabad (040-23373589) spearheaded by Dr. Rupam Borgohain, Professor of Neurology.
What is alarming in most of Dr. Borgohain's cases is that a considerable number are in the 40-50 age group and some are as young as 34 years. “The age for onset of Parkinson's disease has come down,” says Dr. Borgohain.
What causes Parkinson's is not known as yet. It is a degenerative disease and it is not to be considered a mental ailment.Boxer Muhammed Ali and actor Michael J Fox are some of the celebrities known to have Parkinson's disease.
“Accumulation of proteins in cells in the brain due to which cells in the brain die early is one of the reasons said to cause the disease. It is not restricted to a gender and not necessarily hereditary,” says Dr. Rukmini Mridula, Assistant Professor Neurology, NIMS.
Tremors, stiffness and slowness are some of the symptoms. There are grades of severity, says Dr. Mridula. Till recently treatment comprised drugs and physiotherapy. As the disease progresses, which is case dependent, the effect of the drug slowly diminishes; this is called the cut-off period.
But with a new surgery approved for Parkinson's disease, the cut-off period is said to have reduced. The deep brain stimulation with implantation of a brain pace maker, a highlight at NIMS, has helped many Parkinson's patients become self-reliant.
“It is based on the same principle as that of the heart's pace maker. Electrodes are implanted in the brain. The operation per se is not expensive but the pace maker costs about Rs. 4,00,000 and the battery has to be replaced every six years. Follow-up after surgery every six months helps. Medicine and surgery are complementary,” says Dr. Borgohain. “Also people have to come at the right time. The surgery is less likely to work in older patients or if the disease is in advanced,” he says.
Awareness is another issue. “People consider Parkinson's a problem of old age,” says K.R. Gangadharan, director, Heritage Hospital (http://www.heritagehealthcareindia.com/).
“In India, people relate to it as dementia. Dementia can be a part but it is essentially a degenerative disorder that affects the central nervous system and impairs motor skills. We are not as aware of this disease as the West,” says Suma Prasad, medical social worker, Heritage Eldercare Services, Heritage Hospital. “Often people don't know how to care for a patient. Also caregivers cannot take care of the patients 24 x 7. It is a physically debilitating disease and psychological to some extent. We have trained bedside assistants who work in shifts depending on the family's requirement.”
Her Home Care Department at Heritage Hospital offers bedside assistants for patients in Hyderabad and Chennai. In Mumbai, almost all localities have support groups for Parkinson's. A newsletter highlighting new research and more, a network of caregivers and hospitals dedicated to Parkinson's and an awareness drive in April are other positive examples.
Parkinson's Disease and Movement Disorder Society in Mumbai has been doing yeoman service for patients and care givers since 2001. One of its major activities is to bring care givers and patients on to a common platform and disseminate information. “People think it's a mono-disciplinary disorder; actually it is a multi-disciplinary one and needs an appropriate approach. We use physiotherapy, psychotherapy, yoga, dance and occupation therapy to bring a qualitative change in patients' lives. Many patients have improved with yoga. The bottom-line is that their confidence levels increase. The patient has to be made independent,” says Dr. Maria Barretto, coordinator, Parkinson's Disease and Movement Disorder Society, Mumbai (http://www.parkinsonssocietyindia.com/).
“There are not many neurologists working exclusively with Parkinson's disease. Another issue is that this is a chronic ailment and there is lack of information even for care givers. So offering people an emotional and social platform has been the focus of our work,” says Dr. Barretto. “We provide support to existing groups in Cochin and Bangalore and trying to start chapters in other cities. When care givers and patients come together as a group in other places, we offer them support on how to take it forward.”
The need of the hour is to replicate such support systems across the country. As Dr. Barretto says, making the patient independent is what the movement should be aimed at. And also places where caregivers like Vidya Sagar can interact and learn from each other's experience.