Movement is their Mantra

In a quiet, modest villa in Jumeirah, the faint sounds of classical Indian music can be heard coming from the living room, as you step into the foyer. Professional Kathak dancer Vonita Singh sits on a high-backed chair, surrounded by members of her Movement Mantra class — all of who suffer from Parkinson’s disease (PD). A progressive, degenerating disorder of the central nervous system that affects mobility and speech, Parkinson’s currently has no cure and is said to affect one in every 500 people worldwide.

In the UAE, Movement Mantra became the first support group geared towards helping those with PD, and started last year, after wknd. ran a story in 2013 about how Vonita was helping another Dubai-based Parkinson’s patient Gity Bazargan, using the same techniques. “We started getting calls from other PD patients around the country, and the group has really grown now,” says the 48-year-old Indian expat.

That’s good news — not because there are more people battling the disease, Vonita clarifies, but because “those who have it are now connecting with each other”. Considering most families with PD sufferers prefer to hush up the fact, this is certainly a step in the right direction.

At Vonita’s residence, the group is taking baby steps of another nature, as they use a variety of dance techniques and breathing exercises to improve overall mobi-lity. Almost every class tends to present ‘Eureka!’ moments, says the dancer, as they slowly discover how “befitting” Kathak, as a dance form, is for tackling the challenges of PD patients.

Parkinson’s has a wide spectrum of symptoms — but some cardinal features are common to all. “Shuffling gait, slurred speech, sitting tilted to one side, rolling tremors in the hands, loss of balance, rigid facial muscles… with PD, it’s basically your involuntary system that’s failing you,” Vonita explains. “You forget to blink, to swallow — even though your memory is otherwise razor sharp.”

It was the same thing with her own father, who passed away in 2009. Back then, she says, the family had no clue what he was up against and, therefore, couldn’t get him the help he needed. “Unless you’re aware that there is a problem, the drive or urge to intervene does not happen,” she rues. “Within three years of his symptoms first showing, dad’s movements had become absolutely robotic. And we just kept helping him, feeding him, doing things for him — instead of encouraging him to exercise his limbs, no matter how slow the movement. Dad’s facial muscles eventually became so stiff that, in the last two years, we couldn’t determine when he nodded, laughed or spoke — because his face had become like a mask.”

Over the course of two hours, the group works through the teen taal (a 16-beat time cycle that exercises the fingers), tatkal (footwork), ‘lion’s breath’ (a yoga technique that aids swallowing), kapalbhati (breathing exercise that gets the internal organs to move), surya namaskar (sun salutation yoga asanas) and a repertoire of other movements.

Kanwaljit Kaur Dosanjh’s right hand trembles constantly through each exercise. The 76-year-old is currently visiting from the US, where she migrated to in 1998. It was four years ago when she first began to notice the tremors in her hand. A doctor told her it was only the beginning. With good humour that one soon realises is her calling card, she says, “I don’t really let it bother me too much. I do feel stiff when I wake up in the mornings and it’s difficult to get out of bed on my own. I also tend to drop things a lot… But then, I wasn’t too careful before Parkinson’s, so now, the only difference is that I drop things a lot more!”

A retired lecturer, Kanwaljit is on medication (that she believes is helping her), but it’s looking after her young grandsons that she credits with keeping her on her toes. “They’re four and six years old, respectively, so… you can imagine. All the movement required to fight rigidity comes from taking care of those two boys,” she says, fondly. She has, however, learnt “a whole lot more” from these classes, and is keen to continue practising the techniques once she gets back home.

Sixty-five-year-old Zaver Mulji Asar sits slumped on the couch, turning a soft ball over and over in his hands, till Vonita gently reminds him he’s not sitting upright. He smiles and seems happy to talk: about how he came to the UAE in the 60s, and worked at the same company almost three decades till he retired in 2007. Though his condition began manifesting itself a couple of years later, he was only officially diagnosed late last year, says his daughter-in-law Meeta. “He used to walk the length of the Creek often, but by 2011, he started developing chest pains and an inexplicable fear of falling,” she says.

“When we took him to a doctor, they gave him medication for diabetes and cholesterol, but the Parkinson’s was still not addressed, because it didn’t show up on the MRIs or other tests. The delay in diagnosing his case just made his symptoms worse,” she points out.

The changes weren’t just physical either. “He started having hallucinations and suffering from psychosis. He’d read the front page of a newspaper and imagine whoever was featured there was coming to hurt him… The worst part was how people began jumping to their own conclusions, instead of trying to understand what was happening,” she says sadly.

Things are better now though and, one dares say, being around others with PD has gone quite a way towards improving his mental well-being.

The session over, 53-year-old Rashmi Ved is waiting for her husband to pick her up. She practically zips around the room, sometimes tumbling over the couch, overshooting the door… One might be forgiven for putting it down to high energy, but the Mumbaikar’s sprightliness is actually involuntary. A PD patient for the last 18 years, Rashmi was first diagnosed at 35 and suffers from dyskinesia too, the impairment of voluntary movement.

Age is not a factor anymore when it comes to Parkinson’s, she observes, &citing the cases of a 14- and 20-year-old who were recently diagnosed with the disease as well. The onset of her own ill health was “so bad” that she had to give up any dreams of a career. “I couldn’t do anything I wanted to because of the rigidity. It’s affected me very, very much,” she says, welling up.

Her husband of more than 20 years, Hemant, has been a “massive source of strength and support through this time” though. They live in a joint family system, together with his mother, two brothers and their families. “The whole family helps to take care of Rashmi,” says 58-year-old Hemant, who works as a partner at a trading company. “I don’t know how I’d have managed otherwise. Parkinson’s has completely changed our lives.”

In 2010, Rashmi underwent a Deep Brain Stimulation (DBS) operation in Mumbai, a procedure unavailable as yet in the UAE. “I thought the surgery seemed too risky but she was adamant — so we went ahead with it. It did help with the dyskinesia, but she now has other problems, such as lack of balance, poor spatial perception and severe cramps,” says Hemant.

He has just one word of advice to other sufferers: stay busy. “Idle minds will lead to dejection and depression,” he cautions. He’s seen it with his wife and it’s why he takes her out wherever he can: to walkathons, events, the Movement Mantra sessions… “Just so that she has a change of scene and keeps herself occupied. Around the house, she’ll fold clothes, chop vegetables, make khichdi and dhoklas… stay occupied. She tends to help me with accounts too,” he smiles, looking over at her. “She’s got a powerful memory for numbers.”

“People will say whatever they want to,” Rashmi puts in. “Forget them. Focus on fighting the disease.”

karen@khaleejtimes.com

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Living with Parkinson’s

Michael J Fox 53

Actor

The Canadian-American thespian was diagnosed with the illness in 1992, and went into denial for seven years, before becoming one of the strongest advocates for researching a cure through The Michael J. Fox Foundation. “You’ve probably read in People [magazine] that I’m a nice guy—but when the doctor first told me I had Parkinson’s, I wanted to kill him,” he jokes. But he adds, “I often say now I don’t have any choice whether or not I have Parkinson’s, but surrounding that non-choice is a million other choices I can make.”

Linda Ronstadt

Singer

The Grammy winner recorded her last album in 2006. She was beginning to lose her voice, but only found out why in 2012. “I didn’t know why I couldn’t sing—all I knew was that it was muscular, or mechanical,” she says, in a 2013 interview. “Then, when I was diagnosed with Parkinson’s, I was finally given the reason. I now understand that no one can sing with Parkinson’s disease. No matter how hard you try. And in my case, I can’t sing a note.”

Muhammad Ali

Boxer

Former boxing champ Ali was diagnosed in 1984 and has lived with the disease for more than 30 years. “Parkinson’s is my toughest fight,” he says. “No, it doesn’t hurt. It’s hard to explain. I’m being tested to see if I’ll keep praying, to see if I’ll keep my faith.” The sporting heavyweight’s health has deteriorated considerably of late and he is now unable to speak in public.

Richard Clifford

Astronaut

The NASA astronaut first discovered his affliction with Parkinson’s at the age of 42. He went public with the information in 2011, 17 years after the diagnosis because he wanted people to know it’s “not the end of [their] life.” He was also grateful to NASA for continuing to let him fly for them during that time. “They took the high road instead of making the easy decision, which would have been to ground me permanently,” he notes.

George HW Bush 90

Politician

Diagnosed with Vascular Parkinsonism in 2012, the medical condition only affects his legs and requires him to useamotorised scooter to get around. “I have a form of Parkinson’s disease, which I don’t like,” he says. “My legs don’t move when my brain tells them to. It’s very frustrating.”

Billy Graham

Pastor

Faith leader Billy Graham was diagnosed with Parkinson’s in 1992. Of the disease, the nonagenarian has said, “I found that this Parkinson’s does slow you down, whether you want to slow down or not.”

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