Helping those with Parkinson’s, one step at a time

Chennai: In 2014, four years after she returned to India from the US to look after her father, Sudha Meiyappan, an economic analyst by profession, decided to form Parivarthan for Parkinson’s Foundation, a Chennai-based NGO for those with the progressive nervous system disorder.
Although her father didn’t have Parkinson’s Disease (PD) — he had suffered a brain hemorrhage which first put him in a coma and then left him physically compromised — Meiyappan had joined a support group for primary caregivers.That was where she met A L Vasudevan, who had the neurological condition. "I started Parivarthan in August of 2014, with Vasudevan as the peer mentor. Ten people showed up and for me it was an eye-opener as I knew nothing about the disease," says Meiyappan, while spending her evenings and weekends coordinating events for Parivarthan.
When her father died a few months after she launched Parivarthan, Meiyappan thought she would take a step back, but the members said they wanted her back in the lead. The support group continues to this day, having grown from the 10 who met in Anna Nagar to more than 250 members from across the state, with monthly meetings being held in Anna Nagar and Adyar apart from telecounselling and speech therapy sessions.
"In 2015, we worked with YogaVahini, a training and research centre in yoga for some customized therapy and saw symptom alleviation for those with PD," says Meiyappan, who presented a poster on it at the World Parkinson’s Congress in the US. "We have now extended the yoga sessions for caregivers as well," she says.
This month, the theme of the meetings was ‘metamorphosis’ (incidentally, ‘parivarthan’ also means ‘change’) and celebrated the lives of members who had recently passed away. "We have families sharing stories about their loved ones. The real life experiences shared help those with PD as well as their caregivers plan for advanced life care," says Meiyappan. Parivarthan members also do house visits, especially to help those newly diagnosed with the disease. "Although I go on all the visits, I take a person with PD along as peer to peer connection is important," says Meiyappan, adding that membership to the support group is free.
"When you have PD, a constant thought is that things might get worse. There is always a ‘what if’ in one’s mind," says Vidya Krishnan, a retired French teacher who was diagnosed with PD when she was 40. "When you meet people going through the same emotions, you bond," says the 57-year-old. Krishnan says that while sessions on yoga, speech therapy and handwriting help deal with PD on a more practical level, it’s connecting with other people going through the same thing that makes a difference. "You feel part of something, you feel hope."