On April 7, THE WEEK in partnership with Jaslok Hospital and Research Centre conducted a reader awareness seminar on Parkinson’s disease. Parkinson’s is a progressive neurological disorder, causing degeneration of nerve cells that results in lack of dopamine. The main symptoms of the disease include slowness, tremors and rigidity.
The seminar, held at Yogi Sabhagruh in Mumbai’s Dadar, began with a discussion on the cost of treating Parkinson’s and how it need not be an impediment. Dr Suyog Ghadavle from Star Health talked about insurance, especially for deep brain stimulation (DBS) surgery―an essential aspect of the treatment. “In any tertiary care hospital, treatment for Parkinson’s will cost anywhere between Rs20 lakh to Rs22 lakh,” he said. “Since October 2020, IRDAI (Insurance Regulatory and Development Authority of India) has come up with a regulation that these treatments will now be included in the policy, subject to the sum insured in the policy.”
Over the last 15 to 20 years, researchers around the world have seen treatment for Parkinson’s evolve. Dr Paresh Doshi, a leading neurosurgeon with patients both in India and abroad, said that earlier there was a “bucket treatment”, but with better disease management, expectations of outcomes became more ambitious and sophisticated. “Initially, we would be okay if the tremors were controlled, but now we are in a position where patients expect to be able to play golf and badminton,” said Doshi, director of neurosurgery, and stereotactic and functional neurosurgical programme at Jaslok Hospital. “Also now, we know and understand that each patient’s requirement of treatment is different, depending on their type of non-motor symptoms. No one size will fit all. So the message we intended to give through this seminar is that all Parkinson’s patients are not the same. It is time to take the treatment of Parkinson’s, including DBS, to the next level, and that is personalised medicine.”
The seminar also saw patients and their caregivers sharing their experiences. Ashish Dhingra spoke about his experience of caring for his father, a businessman who underwent DBS. “My father was diagnosed with Parkinson’s when he was in his 40s,” he said. “This was 15 to 20 years ago when we first started with medications. His symptoms started with hand tremors, but progressed to such an extent that he would randomly stop while walking. We were then told that surgery was the only answer. It has been about 10 years since his surgery. After hospitalisation for 11 days, his symptoms went away in a couple of days. Right now, we are able to manage the disease so well that he has got his quality of life back. He now travels four to five days a week within the city, can climb stairs and swim.”
Participants at the seminar | Amey Mansabdar
The seminar also stressed on the importance of selecting the right DBS implant. The choice of pacemaker depended on factors such as age of the patient, affordability, insurance and access to specialised care.
Bharati Karkera, specialist nurse for Parkinson’s disease at Jaslok Hospital, spoke about medical aids and devices that can help improve patients’symptoms and also help them participate in activities they enjoy. For instance, the laser cane device can help reduce freezing of gait and assist the patient in walking. Then there is the smart spoon that can help feed a patient without human assistance. Karkera also spoke about the importance of adult diapers like the one made by Friends, which can help patients manage the challenges of urinary incontinence.
Consultant anaesthetist at Jaslok Hospital Dr Aparna Budhakar, meanwhile, talked about the many ways in which meditation helps in managing symptoms of Parkinson’s.
At the seminar, a video was played that narrated the inspiring story of Ravindra Juvekar, who was first diagnosed with Parkinson’s 10 years ago. The video showed him play the piano, carrom, make tea and more, offering those with Parkinson’s a ray of hope.
