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Submitted by PatientsEngage on 15 January 2017

Vonita Singh from Dubai is a trained Kathak dancer who, through her unique initiative Movement Mantra, addresses the basic concerns of Parkinson’s Disease like balance, flexibility and coordination with rhythm and music. Vonita also pulls in caregivers for her programmes, making it holistic, with end results being therapeutic.

Taking on disorders like Parkinson’s Disease and Arthritis is a formidable task, especially when you are neither a therapist nor a medical person. What gave you the impetus?

The impetus came from having had to deal with an even more formidable task – that of being a daughter to a person with Parkinson’s Disease. Strength came from my own suffering Arthritis since my teenage years and a predisposition of wanting to help people in whichever way I could. The demise of my father to PD in 2009 created a huge void. My desire was to use my dance skills as an intervention tool for PD but I would draw a blank whenever I tried to find a platform or universe of people who could benefit from the same. My general observation gleaned from creating interventions to manage disorders such as PD is that whilst there is significant resource available to provide specialised input, a holistic approach to provide community feel and support to patients and care givers alike is woefully lacking. Hence, as you can see, I had no dearth of motivation for embarking on this journey!

In the initial stages, when the changes in response are perhaps not immediately noticeable, what made you feel you were on the right track?

Movement Mantra works in subtle and then not-so-subtle ways. Typically, changes are noticeable from the very first session not only at physical but also at emotional and psychological levels. Seeing the positive changes and a growing group has been humbling yet convincing of the efficacy of the interventions being created.

Do you have a doctor and/or physiotherapist on your panel to advise you on how to go about it?

A leading rheumatologist has lent full support and encourages her patients to join our sessions. We don’t yet have a doctor/ physiotherapist on our panel for PD though this is a work in progress and we are looking for hospitals, research institutions and other interest groups to lend support. On an ad hoc basis, we have hosted staff from the German Neuroscience Center and physiotherapists to our workshops and participated in awareness programmes at several hospitals in Dubai. In collaboration with medical practitioners, it would be good to track progress in patients via longitudinal studies of key parameters/ indicators and thereby corroborate the informal feedback we continue to receive from participants.

What exactly is it that you are aiming for with your exercise and dances with the PD and arthritis patients?

The main underlying challenge in PD and Arthritis is that of mobility. Remember, muscles come with the disclaimer - ‘use me or lose me’! We at Movement Mantra indulge in mind full movements to alleviate day to day mobility issues, delay the progression of the disease and thereby improve the quality of lives of those dealing with these conditions.

The word ‘Mantra’ comes from the Sanskrit word, Mann, literally meaning from the mind. Another connotation of the word Mantra is that of repetitiveness. So mind full movements, repeated and performed again and again is the key element of this programme.

Whilst these sessions do not claim to be medical interventions, there is no denying that the end result of these interactions is therapeutic.

Please tell us what exactly you do as per movements and other exercises with the PD patients.

Doctors treating PD recommend exercise as an integral part of a person’s regime along with medication. Intention in movement is exercise. In many PD exercise programmes, cognitive strategies or cueing such as visual cues, rhythm, verbal instructions and visualisation are integrated. Such cognitive strategies are the very tools that a dancer also uses to learn and execute dance sequences. Using the brain consciously to guide the body is a basic tool of dance and this is also much needed by a person with PD to ease the day to day challenges.

Exercises at Movement Mantra (MoMa) are expressive and creative. Participants move and explore in ways that are fun and enjoyable. We employ Kathak dance elements – rhythm, imagery, narrative and music to alleviate PD specific concerns such as balance, flexibility and coordination. This is achieved via aesthetic objectives rather than mechanical or clinical goals.

During these sessions we also focus on other cardinal symptoms like loss of speech, masked face, constipation, shallowness of breath etc. by exercising muscles responsible for these activities.

Coming together as a group, our participants enrich their lives by regaining grace, confidence and meaningful connections with caregivers, friends and each other.

Much like any other exercise plan, MoMa sessions begin with a warm up period and end with cool down exercises. Focus on correct and effective breathing while exercising along with specific breathing techniques are an integral part of these sessions.

Is the therapy backed by any research or similar initiatives?

Neuroprotective benefits of exercise are totally backed by research. Further, dance as an exercise for PD is gaining support and according to ‘Shake It Up’ - Australia Foundation for Parkinson’s Research (www.shakeitup.org.au), dance classes for people with Parkinson’s Disease are ongoing in more than 75 communities around the world!

Research by the European Parkinson’s Disease Association and others has well documented the therapeutic effects of practicing any form of art on PD patients. Neurologist Oliver Sachs has also discussed the therapeutic potential of music for patients with a variety of neurological conditions. I have received training by the Mark Morris Dance Group from Brooklyn, New York who have developed and now offer the Dance for PDTM programme (www.danceforparkinsons.org). This programme has stimulated research at major university research centres around the world, an indication that the medical community acknowledges the potential benefits of dance for persons with PD. Several studies are underway at Roehampton University, Queensland University of Technology, University of Florida and York University, among others.

Did you get any support from the local authorities in Dubai since you are working on a very commendable project which strives to help all nationalities?

Dubai has a strong track record of innovation, lateral thinking and developing cutting edge infrastructure and resources in the region. Based on data in The Lancet, there could be about 10,000 PD patients in the UAE. However, statistics need to be developed from the ground up to present a more accurate picture. Interactions with doctors, therapists, patients and their families suggest that PD awareness and care facilities are underserved in the UAE and efforts need to be made to fill this gap. As a parallel, I recollect seeing the strong efforts made few years ago in creating awareness for Autism and the tremendously positive impact that it made. I am in touch with relevant stakeholders in Dubai to do something similar for movement disorders and hope to make progress in the coming months.

How do you involve the caregivers, the family and people associated with the patient in Movement Mantra?

Families play a huge role in supporting patients, especially in regions such as the Middle East and Asia where palliative care has not become institutionalised due to socio-cultural or other reasons. Family members are the most likely providers of physical and emotional support. I notice a complete spectrum of family members as care givers in my sessions. Some are totally ‘there’ giving their all - physical time and mental space…keeping abreast with knowledge and understanding of the disease to help their patient. They ferry their own and others to the sessions and participate enthusiastically. Often they check their natural instincts and encourage patients to make greater efforts at movement and overall well-being. Unfortunately, there are also others who remain hands-off – sometimes because they have simply not grasped what needs to be done because they often remain in denial. All stakeholders involved in helping people need to help in raising awareness of the disease so that patients can garner more compassionate and sensitive support from their families.

Family members and care givers are always very welcome to the MoMa sessions! By joining and being part of the 60-90 mins regime, they develop a better understanding of the disease and its manifestations. More importantly, this window allows for beautiful bonding time between patient and caregiver pairs, amongst themselves and with other members of the group.

Do you provide support to caregivers in any way?

Who is taking care of the care givers?! We often tend to take them for granted. And caregivers too fail to accept the gravity of the situation, refuse help that may be extended and remain in denial…and very soon become victims of burnout! Caregiver burnout is defined as a state of physical, emotional and mental exhaustion that may be accompanied by a change in attitude from positive and caring to negative and unconcerned.

As part of the larger support group we make efforts at organising workshops with doctors, therapists and counsellors for patients and caregivers. Social outings and picnics have yielded positive outcomes in furthering the familial bonds.

Sharing experiences and personal stories during monthly meets has often resulted in a catharsis for caregivers, providing strength and resilience to carry on.

Have you managed to achieve what you set out to do? How do you feel about it?

Movement Mantra is a humble attempt to help people with Parkinson’s and other mobility challenges based on my personal conviction that mindful movement must become a mantra in each individual’s life. In that sense, it is very satisfying to see and hear of the impact that this initiative is making in people’s life from the individuals and their care givers. There could not be a better motivating factor to want to carry on. I have no illusion however, that I am still at the relative start of this journey…there are miles to go, before I can sleep! There is a big gap and a resulting urgent need for this initiative to become viral and institutionalised as de riguer in every senior citizen and individual’s life who has mobility constraints.

Please tell us about your future plans and what are the new elements, if any, one can look forward to.

Movement Mantra took birth in Dubai but this river aims to flow far and wide, to where the tiny rivulets find passage. I aim to partner with existing institutions, starting with those in the UAE, to promote this initiative at a larger scale. I expect that this partnership will result in the creation of sustainable resources to carry on with the required interventions over the longer term. I am also in the process of encouraging like-minded people with the aim of training them to replicate this effort and reach a wider audience.

Palliative care is a much needed and rapidly proliferating space in Asia and the Middle East. The vision of Movement Mantra by its nature is synergistic as a lock and key model with such projects and could be a new element added to our armory in future.

Brinda Kumar: Movement Mantra helped improve my husband’s posture and movements

When I went to attend a workshop for Parkinson at the Neuro spinal Hospital in Dubai, I got to know about Movement Mantra. My husband has been attending classes for almost 8 to 9 months now.

It was not difficult for him because he has always been doing exercises. He was diagnosed with early Parkinson’s about 6 yrs ago. It started with a slight tremor in his fingers on the right palm. Then, with medication, the tremor stopped. But over a period of time, his movements have slowed down. But he is still able to do everything by himself and doesn’t really depend on others.

The classes are twice a week , Sundays and Wednesdays, for an hour and a half. It is a very satisfying experience, and it gives my husband immense pleasure to attend the class. He, in fact, always looks forward to it. Movement of muscles in each and every part of the body is very systematically explained and taught in the class which helps to carry on the regular functional activity in the day to day life.

He has benefitted from the classes . I can see the improvement in his posture and movements.

Movement Mantra classes have enabled us to grow like a close knitted family . The ever smiling Vonitaji, her selfless attitude and kind and encouraging words make all of us enjoy and look forward to the classes. Sharing the small eats after the classes and watching the affected ones help and support each other is by itself a great experience to relish.

Vonitaji is a God sent agent to all the Parkinson affected families. A tireless and selfless person, she is also very thorough in her approach to the affected people. It is a great blessing to know her and her Movement Mantra.