Moving to a different rhythm

As April marks the Parkinson's Awareness Month, here's taking stock of the awareness on the neurodegenerative disorder

By Shereen Saif, dancer and actor

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Published: Fri 12 Apr 2019, 12:00 AM

Last updated: Fri 12 Apr 2019, 2:00 AM

Hundreds of thousands of red tulips will dot the globe this month as a symbol of hope and optimism for people with Parkinson's. April is Parkinson's Awareness Month. And this year's global theme to "Start a Conversation" urges people to talk about the condition with their loved ones, friends, neighbours and the community at large.
Many of us may have heard of the condition in passing. Perhaps even come across stories of celebrities like George W. Bush, Muhammad Ali, Robin Williams, Michael J. Fox and Neil Diamond heroically fighting the disease. Or heard someone talking in hushed whispers about a family member or a dear friend suffering from it. But what really is Parkinson's?
Parkinson's Disease (PD) is a progressive neurodegenerative disorder. In layman's terms, it means that the condition affects nerve cells and that, while symptoms can be controlled to an extent, there is nothing that can stop the disease from progressing. It is caused when the nerve cells that produce dopamine, a neurotransmitter responsible for movement, die off for reasons unknown. This results in tremors, slowness of movement, stiffness, and problems with gait and balance. What makes the condition even more challenging to live with for both patients and their families is that it can lead to loss of cognitive skills, hallucinations, depression and issues with different kinds of communication, including speech, facial expressions and writing.
Neurological disorders are now the leading source of impairment in the world and Parkinson's is the fastest growing of these. Over the past generation, the number of individuals with Parkinson's Disease globally has more than doubled to over 7 million. According to medical journal The Lancet, the UAE has an estimated 4,500 reported cases of Parkinson's Disease. Many more remain undiagnosed, wrongly diagnosed or unreported due to social stigma.
What I know about Parkinson's comes from my two-year long association with Movement Mantra, a social enterprise that works to improve the quality of life of people with Parkinson's in the UAE. Movement Mantra was started by Vonita Singh after her father succumbed to the disease in 2009. Through movement sessions that incorporate elements of dance, yoga and theatre, we have been working with a small but growing community of PD members and their caregivers. In the absence of a cure, we have found (and research proves it) that a way to delay the progression of Parkinson's is to move frequently, consistently and mindfully.
With this core message in mind, Movement Mantra and independent theatre company Third Half Theatre created Still Dancing, an original dance-theatre production. The play is inspired by the true-life story of Prem Chandana, Vonita's father and carries a message of hope for people with Parkinson's.
There is another less obvious message that the play hopes to convey. Having worked closely with people with Parkinson's, I see that the disease means much more to them than the physical challenges it poses. It is about how the condition robs them of their independence and dignity. In this fast-paced world we live in, we are intolerant to slowness. People with Parkinson's are heroes who move to a different, slower rhythm. All they want from us is patience and a few extra minutes. Let's be kind and give them that... because they deserve it.
(Saif plays the role of narrator Vonita in Still Dancing that will be staged at The Junction, Al Serkal Avenue, on April 12 and 13)
wknd@khaleejtimes.com