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Submitted by PatientsEngage on 13 April 2016

There is much more to life for people affected with Parkinson’s disease than treatments and medications, believes Sudha Meiyappan, founder of Parivarthan, a community support group in Chennai that provides a safe platform to those diagnosed with Parkinson’s disorder.

Shaik Mohideen Sahib returned to India couple of years ago after he retired as a Hindi teacher for 20 years in Muscat, Oman.  This was not his best time since his mother had recently passed away, he was emotionally shattered, but he nonetheless looked forward to spending time with his wife and two daughters in Chennai. 

Upon his return, his slowness in walking, slurred speech, general lethargy and weight loss were self explained as grieving for his mother. With no abatement of the symptoms, the family consulted a neurologist who gave the diagnosis of Parkinson’s disorder (PD).  Mr. Mohideen and his family had never heard of this disorder.  They were confused, depressed and felt utterly lonely. Mr. Mohideen embarrassed by his deterioration in his physical movements and people’s inability to understand his speech reduced his social interactions and avoided talking on the phone.  

Parkinson’s, a neurodegenerative disorder, usually, but not always, strikes older population of over 60 years and is more prevalent among men. For people with PD (PwPD), in the substrata nigra area in their brain, neurons that carry dopamine, a chemical messenger responsible for smooth and purposeful movements, for some unexplained reason become damaged or die.  This depletion of dopamine causes havoc in the physical movements manifesting in symptoms typical to Parkinson's like tremors, rigidity, slurred speech, and gradual loss of movements.  

Like in the case of Mr. Mohideen, a few, but not all symptoms are manifested.  Unfortunately, since the cause for the gradual depletion of dopamine is not known, and there is no complete cure for PD, it usually leaves PwPD in a state emotional vulnerability due to their perpetual physical challenges.    

When Mr. Mohideen first came to Parivarthan, a community support group in Chennai that provides a safe platform for people affected by PD, he was shy, non-communicative and in depression.  He would never participate in discussion among members, would not ask questions to the guest speakers and would always be accompanied by one of his daughters.  But he would never miss a meeting, be it a general interactive one or a session on yoga or occupational therapy.  

Mr. Mohideen’s family and he gradually made friends with other members. They would swap stories on their experiences with PD.  Most members remembered his daughter and not Mr. Mohideen. After almost a year of engaging with Parivarthan, at one meeting his usually impassive face broke out in to a smile leaving most members surprised.  With encouragement from other members and yoga therapists, his depression gradually abated.   He started participating more in discussions, did not hesitate to speak in public and would also sometimes come to the sessions unaccompanied by his daughters. 

Science has made great strides in PD medication that can effectively manage its symptoms and provide quality of life for PwPd.  Inspite of the medication there is a huge social void leaving the person affected by PD with a sense of living on an island. Parivarthan strives to reduce this isolation with regular peer interaction along with information on the disorder, and its treatment and therapies. There is a sense of community among members where they can discuss their intimate life details in a secure setting.   When a member is irregular to the meetings, it is noticed by others and some usually follow up with phone calls or home visits. 

It is highly crucial for cities to create these safe spaces of sharing and caring.  This is a very neighbourhood oriented effort and not a macro, all encompassing city level endeavour.  With difficulty in stepping unassisted out of house, most members are comfortable travelling frequently only within the radius of couple of kilometres.  

Parivarthan is expanding its neighbourhood focus within Chennai.  For those unable to make it even to this, there are plans of home visit by counsellors and social workers, however, the best counsellor would always be a fellow PD traveller.  There is much to life in this PD journey beyond treatments and medications.  Quality of life can significantly be increased through local, community level interactions. This is evident in Mr. Mohideen’s confident voice when he answers the phone himself these days.

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