This coach has something important to tell you about Parkinson’s Disease

Low levels of dopamine are not just associated with depression but also the progressive nervous disorder. One must move and do so mindfully. Enter kathak

When Dubai residents of Indian origin Sanjeev Dixit and Dr Vonita Singh met in 2012, she was already a movement coach and the founder of the social enterprise Movement Mantra. Helping patients with Parkinson’s Disease through movement and dance, she was looking to spread awareness through a film or a play. Dixit and his company, Third Half Theatre, were the ideal match. The result was a theatrical production called Still Dancing, which tells the story of Singh’s family and her father’s battle with Parkinson’s Disease. Then the pandemic hit, and a few shows later, the production was called off.

The cast of the production, which will make its India premier on World Parkinson's Day on April 11. Standing, top row (L to R): Avinav Mukherjee, Bhavna Pani and Amey Mehta; Sitting on stool (L to R): Mona Ambegaonkar, Vivek Tandon: Sitting, on floor (L to R): Abhimanyu Gupta and Bhumika Mane ( Courtesy Prachi Sibal)

Now, they are dusting off the play and putting it back up on the stage in time to mark World Parkinson’s Day on April 11. The production, done in partnership with QTP, will have its Mumbai premiere with a new cast and this time, is being done in collaboration with the dance troupe, Kathak Rockers.

Parkinson’s is a neurological disorder and affects more than ten million people around the world, according to Parkinson's Foundation. Studies estimate one million cases in India alone. Singh’s experience as a caregiver to her father with the condition inspired her to create this production. “As caregivers, we didn’t realise the importance of movement for Parkinson’s Disease. There is a loss of dopamine that doesn’t allow you to move, but movement helps in the absorption of dopamine,” she explained. “It’s important to practise mindful movement”.

Singh saw other caregivers and patients make the same mistakes and began talking about her experience. It led to the formation of Movement Mantra, where she now runs individual and group sessions to aid Parkinson’s patients with movement. “I used to think that it complements medicine, but now I’ve come to believe it is medicine,” she says.

Dr Charulata Sankhla, senior Neurophysician and movement disorder specialist at PD Hinduja Hospital and Research Centre, Mahim, recommends movement therapy for patients, too. “All kinds of movement, like yoga, walking, dancing, cycling at home, and Tai Chi work,” she says.

The dance route

A trained kathak dancer, Singh realised that her own practice and the therapy she was teaching to Parkinson’s patients had a lot in common. She thought she had had a brainwave of sorts, only to discover that dance for Parkinson’s Disease has been a therapeutic concept for over two decades in some parts of the West.

“Starting from the footwork (tatkar) that helps with balance, to posture and functional speech therapy, kathak involves movement of the entire body. As the condition progresses, patients lose rhythm and by practising dance, you hold on to it. It’s as if elements of kathak were made for patients with Parkinson’s Disease,” she explains.

More than a movement disorder

Several myths surround Parkinson’s Disease, and Sankhla tells us that the chief among them is that it is a fatal disorder. “That is not true, it is treatable. With proper treatment, many patients can live a normal life,” she says.

Tremors, most commonly associated with the disorder, are not an essential part of the disease. “While motor symptoms are common like tremors, stiffness, and slowness in walking, there are non-motor symptoms that people are not aware of,” she explains.

The production tries to address some of these myths as well as the stigma associated with the condition, caregivers’ compassion fatigue, and Young Onset Parkinson’s Disease (YOPD). “It was considered an age-related condition. But the youngest member I interact with is only 18,” Singh says.

Mahmood Merchant, a 69-year-old Dubai-based Parkinson’s patient, calls the play ‘The Parkinson’s Family 101’. The scenes on stage mirrored those in his life and “it brought us together as a family and we feel equipped and a little more prepared for it,” he says. For Milind Joshi, a 51-year-old Parkinson’s patient, on the other hand, it is the depiction of a patient’s state of mind that remains memorable.

While addressing common myths about the play was central to the project, Singh and Dixit knew that the production would also need to forewarn people. “About 90 percent have speech issues. I have met a lot of people who say their speech is alright and they don’t want to go through speech therapy,” Singh explains.

Amid these concerns, Dixit also had to find the dramaturgy in the story. “I imagined Parkinson’s like a cage because of the mask face and limited movement. Since they (patients) can’t answer and can’t move, we believe they are not present. But they are there and they can process everything,” he explains adding that conveying this desperation became central to the dramaturgy. “While it focuses on Parkinson’s, it is also the story of a family going through this,” he adds.

Still Dancing will be performed on April 11, 7.30 pm at Experimental Theatre, NCPA and April 13, 7.30 pm at Royal Opera House, in Mumbai.

It will be performed on April 19 and 20 at 7.30 pm at The Forum, Ahmedabad.