Dancer, Vonita Singh, quietly works for people with Parkinson’s through her initiative Movement Mantra. Manju Ramanan attended one of her sessions and interacted with different age groups of people with Parkinson’s. Muscles come under a disclaimer – ‘Use me or lose me’ and early intervention can always contain the condition so that the afflicted has a better quality of life
What are the early signs of Parkinson’s that dance can address at a nascent stage?
Parkinson’s Disease (PD) is second only to Alzheimer’s and is a debilitating progressive neuro degenerative disorder. Loss of dopamine producing cells in the brain lead to a wide range of symptoms though no two patients exhibit identical attributes. Cardinal motor symptoms of Parkinson’s:
• Slowness of movement (bradykinesia)
• Postural instability (impaired balance and coordination)
• Muscle stiffness
Other symptoms that make life of a person with PD very challenging:
• Sleep disturbances
• Loss of speech
• Cognitive changes
The symptoms of PD often develop insidiously, remaining unnoticed until the individual requires certain movements that over extend the capacity of the stiffened ligaments and muscles. Doctors treating PD therefore recommend exercise as an integral part of a person’s regime along with medication. This intervention should be initiated without delay as muscles come with the disclaimer – ‘use me or lose me’!
Intention in movement is exercise. Dance, a performance art helps delay the progression of most of the above symptoms. In many PD exercise programs, cognitive strategies or cueing such as visual cues, rhythm, verbal instructions and visualization 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.
Research by the European Parkinson’s Disease Association and many others has shown that when practicing any form of art, the brain rewires itself to bypass the autonomous nervous system. Neurologist Oliver Sachs has also discussed the therapeutic potential of music for patients with a variety of neurological conditions. Dance accompanied by music can shift mood, stimulate positive interaction, facilitate cognitive function and also coordinate motor movement.
I am not a therapist but at Movement Mantra (MoMa), we employ the dance elements – rhythm, imagery, narrative, music and community to alleviate PD specific concerns such as balance, flexibility, coordination, isolation and depression. This is achieved via what are aesthetic objectives rather than mechanical or clinical goals. Coming together as a group, our participants enrich their lives by regaining grace, confidence and meaningful connections with care-givers, friends and each other.
What is the research you have on Parkinson’s in the UAE?
According to data in The Lancet, Middle East fares better compared to Europe or the USA with about 27 to 43 people in every 100,000 being afflicted by PD. This would translate to under 10,000 PD patients in the UAE. However, statistics need to be developed from the ground up to present a more accurate picture.
My 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. “Awareness leads to compassion, compassion to giving, giving to research and research will lead to a cure” – Pamella Quinn, a PD coach. I recollect seeing the strong efforts made few years ago in creating awareness for Autism and the tremendously positive impact that it made.
How are you planning to reach out to more people?
Movement Mantra has so far grown in an organic way. It started with one connect over Facebook with Gity Bazargan, followed by an article in a weekly magazine in October 2013, which brought together five PD members and their families within hours of its release! Gity, a resident of Dubai and fighting this phantom, PD, had set up a FB page, ‘Live and Love Life’ inviting others in similar situation. Gity is an inspiration to all around her and it has been my privilege to nurture, support and grow that network. Today, in a span of little over two years we are connected with over 35 PD patients and their families on a regular basis in the UAE and India. MoMa platform in Dubai has been an important catalyst in creating active, engaged Parkinson’s community where there was none.
In order to grow further, we need to take several initiatives such as training the trainers to replicate Movement Mantra interactions across several locations in this region. I recently participated in PD workshops and conferences in Kuwait and Jordan and seeing the interest from individuals and institutions there in MoMa activities, am convinced that we need to grow in these locations at the earliest. Greater media, sponsor, hospital and volunteer support will allow promote faster proliferation of this cause.
Most importantly, the government can create impetus by making palliative care including care for PD patients a priority – UAE has demonstrated its commitment to the welfare of its residents by various initiatives being undertaken by the Ministry of Health and the recently launched Ministry of Happiness.
Tell us about associations and groups that add to your mission?
I am inspired and have received training by the Mark Morris Dance Group from Brooklyn, New York who have developed and offer the Dance for PD program. Whilst no formal affiliations exist at this time, I do collaborate with hospitals via participation in awareness events around World Parkinson’s Day and via presentations and interactions in seminars such as those organized by the Kuwait Neurological Society, Kuwait and the Movement Disorder Society in Amman, Jordan. I constantly exchange ideas via online discussion boards and newsletters, which help in better understanding and evolving the interventions MoMa works with.
Do you have a medical practitioner in your panel who maps the progress of your students?
Not yet though this is very much part of the plan. On an adhoc basis, we have hosted staff from the German Neuroscience Center and physiotherapists to our workshops. In talks with medical practitioners we have discussed the need to evidence and record the efficacy of the MoMa devised interventions via the active participation of doctors and therapists in these sessions. 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 and their family members! This will allow us to formalize and replicate the modules that we currently engage with and train teachers – with the aim of reaching out to a wider audience.
How do families help in supporting people with Parkinson’s?
Families play a huge role in supporting PD patients, especially in regions such as ours where palliative care has not become institutionalized due to socio-cultural or other reasons. Family members are the most likely providers of physical and emotional support.
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 and occasionally due to them remaining in in denial. All stakeholders involved in helping people with PD need to help in raising awareness of the disease so that people with PD can garner more compassionate and sensitive support from their families.
In my own family, my brothers and I were ‘all-in’ when my father was diagnosed with PD. This compensated for the lack of holistic care available in Delhi at the time but took its toll on the physical and emotional well-being of all involved, including the nurse that was hired. Most distressing was to see my mother, a qualified doctor herself, being at a loss to deal with Dad’s hallucination episodes, which would frustrate them both. Family members of PD patients are often taken for granted…but who is taking care of the care giver? Care for the care givers is a strong focus area with our group – Majka Goos Roerink and Jose Deheer at ‘Authenticity’ and Ingrid van de Kamp, long time friend of Gity’s are our shining stars instrumental in organizing workshops to help people with Parkinson’s, their near and dear ones and care givers, deal with the changes and challenges.
How did your personal mission grow into one addressing a larger cause?
It will be a stretch to say that I had a personal mission up until a few years ago in relation to MoMa and PD. What I did have is a huge void created by the demise of my father to PD in 2009, preceded by my Mum’s succumbing to cancer (aggravated no doubt by the stress of being his caregiver) in 2008. The void was aggravated by my predisposition of always wanting to help people in whichever way I could as I could not find a ready vehicle to reach out to people suffering from PD and hence fell unfulfilled. This quasi adversity I wanted to turn into an opportunity. Armed with my strong background in Indian classical dance and my research based bent of mind through my doctoral work in Anthropology and subsequent assignments, I started looking up on the internet how dance could help with mobility. Voila! Dance for PD’s curriculum rang true to all that I had intuitively believed in. Armed with a certificate from the Mark Morris Dance Group, I made tentative beginnings to reach out to PD patients in Dubai in 2013.
Are there more centers in the UAE working on the same lines. Do you associate with them? How?
Unfortunately, we are not aware of centers in UAE and the region that may be focused on such interventions. We are keen to grow this movement and are looking for bodies and individuals who want to join up.
How many nationalities attend your classes and have they taken the word forward in their communities?
Gity Bazargan, an Iranian by decent was my first participant. Second, a British who chooses to remain anonymous. Whilst the largest nationality today are Indians, the group has members from New Zealand, Pakistan, Norway and more recently also from the local community. Men and women both feel comfortable participating in these sessions.
What is your plan with taking this cause further?
Movement Mantra was born after a long gestation period and having embarked upon this journey from passion to mission and with a deliberate plan of using dance as medium of intervention, I am confident and excited about furthering on this path. I am committed to ensure that MoMa sees viral growth and where mindful movement becomes a mantra in every PD fighter’s life, and helps ease the day to day challenges.
Photographs by: Sulthan Khan