“The lockdown has affected people with Parkinson’s in India immensely”
Author: Saskia MairPublished: 29 October 2020
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We talk to Dr Maria Barretto, CEO of Parkinson’s Disease and Movement Disorder Society, India, about how the organisation is helping people with the condition during the coronavirus pandemic – and why solidarity in Parkinson’s community is essential
Tell us about Parkinson’s Disease and Movement Disorder Society.
The Parkinson’s Disease and Movement Disorder Society (PDMDS) was established in 2001 to educate people in India about Parkinson’s, and to support and rehabilitate those living with this relatively unknown condition. Through its network of professionally run community-based centres, the PDMDS provides free educational and rehabilitative support to people with Parkinson’s and their families.
There is still stigma surrounding Parkinson’s in India, and this is primarily due to the lack of awareness. In all age groups, many are ignorant about the disease, have not even heard the name – and lack understanding about what it does to a person and their family. So, many avoid seeking help and support. A major goal of the PDMDS is to educate and sensitise the general public through awareness programmes.
PDMDS also works with people with young onset Parkinson’s disease, who face discrimination in their work and personal life due to decreased capacity for physical work and experience of non-motor symptoms.
The organisation has witnessed an increasing realisation in the public that a lot can be done to improve the quality of life of people with Parkinson’s in India.
Dr Maria Barretto.
What more do you think needs to be done to support Parkinson’s community?
People with Parkinson’s and their families require a network of care, support and information. This includes safe digital modes of treatment and means to access it; home visits and assistance by healthcare professionals, especially to people who are bedbound and those living alone or with elderly family members; services to deliver medicines and assistive aids directly to their homes; a helpline service; and financial aid for Parkinson’s care, particularly during the economic crisis caused by the pandemic.
There need to be large scale awareness programmes in rural and tribal areas to reduce stigma, aid early diagnosis and provide resources and support – as well as sensitisation programmes at workplaces to enable the young working population with Parkinson’s to feel comfortable, appreciated, retain their jobs and sustain themselves financially.
We also need workshops to sensitise doctors on the importance of palliative care and, since Parkinson’s is progressive, on ‘future planning needs’ to plan finances and other asset management.
How has the coronavirus pandemic and lockdown affected people living with Parkinson’s disease in India?
The lockdown imposed during Covid-19 has affected people with Parkinson’s in India immensely, leaving many with limited or no access to neurologists and healthcare professionals. This has resulted in a number of them reporting worsening of symptoms due to lack of their usual Parkinson’s care. People have also reported unavailability of certain Parkinson’s medications – and with no access to a neurologist, alternatives could not be suggested. An increase in mental health issues has been reported and observed due to isolation and fear of Covid-19.
PDMDS has adapted and initiated many free-of-cost resources and services to online platforms to reach people with Parkinson’s and their families across India during the pandemic.
Weekly support group sessions in regional languages, which involve new forms of physical exercise, cognitive activities, creative arts and celebratory sessions for special occasions, have now been adapted to group video calls to uplift people at home. Since April 2020, around 1,000 sessions have been conducted.
The phone counselling service, which began in April 2020, has gone from just five sessions to more than 150 sessions today, and around 65 special sessions for family members and caregivers have been conducted to help them manage professional and personal responsibilities. We have received a lot of positive feedback.
PDMDS has run online sessions during the coronavirus pandemic.
What advice would you give to Parkinson’s community at this time?
The pandemic may be challenging, but it is also a great opportunity to adapt to interact safely with others, stay connected and find new ways to continue rehabilitation and support online. There may be many restrictions, but it does not mean that we have to restrict ourselves from exploring and learning new things.
We know, now more than ever, how important it is to keep our minds and bodies productively engaged. Let peace of mind and physical wellbeing be your highest goal, and organise your life around it. Follow a disciplined schedule of exercise, diet and medication and do not neglect your mental health.
Let’s also find ways to foster and strengthen connections between healthcare professionals, families and all people with Parkinson’s globally. Solidarity in Parkinson’s community at this time will only help us understand that ‘we are all in this together’.
Dr Maria Barretto has a professional career spanning almost four decades of research, teaching and consulting in psychology, with a focus on mental health. She has been CEO of Parkinson’s Disease and Movement Disorder Society since 2005, and has been a vocal advocate for inclusion of developing countries in World Congresses and policy making. She was invited to co-chair the organisations committee for the World Parkinson Congress, held in Portland, US in 2016 and in Kyoto, Japan in 2019.
She was awarded the Dr Rana International Parkinson’s Community Service Award, and on International Women’s Day in 2015 was presented with an award by Nirmala Sitharaman, Minister for Finance and Corporate Affairs, for her work with PDMDS. She lives in Mumbai, India. Find out more about Dr Maria Barretto.
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