India Parkinson's Disease & Movement Disorder Society on Awareness

An interview with the India Parkinson’s Disease & Movement Disorder Society on Awareness, September 8, 2023 by George Ackerman, Ph.D, J.D.

Biography

The Parkinson’s Disease & Movement Disorder Society (PDMDS) is the leading voice for Parkinson’s in India. Through our activities, we strive to raise awareness about Parkinson’s and dispel the associated myths, provide affordable and accessible information and therapy to all stakeholders and promote the rights of People with Parkinson’s (PwPs) in India.

We started with one community-based support centre in a suburb of Mumbai in 2005, and have steadily grown to more than 60 Parkinson’s Support centres in 13 states all over India. This Mumbai paradigm has been replicated in other parts of the country through the ‘PDMDS MULTIDISIPLINARY MODEL OF CARE’ which has been internationally recognized as one of the best models of care for developing countries.

Together We Move Better I World Parkinson’s Day 2020 I Parkinson’s Society India https://www.youtube.com/watch?v=c-QVCWFWNT4&t=2s

Can you tell me more about your organization?

Parkinson’s Disease and Movement Disorder Society (PDMDS), is a Non- Profit Organization founded by Padma Shri Dr. B. S. Singhal (Neurologist at Bombay Hospital, India).

We are a team of allied health care professionals who aim at:

i) Spreading awareness about PD
ii) Providing FREE multidisciplinary services(Physiotherapy, Speech therapy, counseling, etc.) to People with Parkinson’s disease and their caregivers.

iii) Promoting healthy living

We achieve this through our more than 60 Support Groups in 24 states of India where we have our regular weekly ONLINE AND OFFLINE support group sessions for People with Parkinson’s.

What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?

Our Story

The PDMDS is an all-India charity organization founded in 2001 and registered under the Societies Registration Act of 1860. The organization was founded by internationally renowned neurologist Padma Shri Dr. Bhim Sen Singhal, whose vision was to set up a free-of-cost multidisciplinary support service for PwPs and their caregivers with the aim of improving their Quality of Life.

We started with one community-based support center in a suburb of Mumbai in 2005, and have steadily grown to more than 70 Parkinson’s Support centers all over India. This Mumbai paradigm has been replicated in other parts of the country through the ‘PDMDS MULTIDISIPLINARY MODEL OF CARE’ which has been internationally recognized as one of the best models of care for developing countries.

Most recently in India, Parkinson’s disease has been included in the Rights of Persons with Disabilities Act, 2016 by the Indian Parliament. Dr Maria Barretto, the CEO of the PDMDS, was nominated on the sub-committee for Neurological Disorders by the Ministry of Social Justice and Empowerment to make recommendations for Parkinson’s disease.

What type of goals do individuals with Parkinson’s have when working with you?

At the PDMDS our mission is to accomplish the following objectives:

To reach out to the Parkinson’s community from all corners of India through the development of urban, rural and tribal Parkinson’s support centres.

To promote public awareness about Parkinson’s.

To develop resources within the community that can be effectively utilized to support PwPs.

To facilitate community-based programs for PwPs in other developing countries with limited or no access to Parkinson’s care.

To promote healthy living through healthy ageing programs among seniors.

What if the PDMDS your Model of Care?

COMMUNITY BASED

Taking Parkinson’s care to those affected has been a key objective for us in order to allay the problems of mobility faced by the population. Thus, we run community-based centres in more than 60 locations across India. These are run in fixed local venues which are disability – friendly such as religious institutions, educational institutions, community recreational and charitable centres and this eases the access of these centres to people with Parkinson’s and their caregivers. This feature makes the model replicable across the country, yet at the same time it is adaptable to fit the diverse cultural specifications of each location.

MULTIDISCIPLINARY

Being a complex condition requiring a myriad of rehabilitative interventions, we have focused on developing the model to encompass varied allied health services. At the helm of this is an internationally recognized, evidence – based written manual which has facilitated the education and rehabilitation of people with Parkinson’s and caregivers, as well as, the capacity building of allied health professionals specifically in Parkinson’s care. This multidisciplinary paradigm is based on the principles of physiotherapy, occupational therapy, speech therapy, psychology, neuropsychology, diet and nutrition, dance and movement therapy, yoga. Delivered in a group setting and under one roof, these sessions are cost-effective and the paradigm has enabled us in reaching out to people with Parkinson’s (PwPs) and caregivers to whom rehabilitative Parkinson’s care is not available.

EVIDENCE BASED

The educational and rehabilitative services which are provided are based on established theories and fields; further researched, published and delivered by qualified professionals. This allows the content provided to be standardized and scientific, ensuring rehabilitation-efficiency. Moreover, this paradigm promotes evidence-based care to be replicated in a variety of communities, including those in low resource settings.

FREE OF COST

The patient – oriented services offered by us come at no cost to the patients and their families. This feature decreases the disease-specific challenge of affordability of a multitude of allied health therapies for a population that is encountering rising medical costs and age-related limited resources.

GROUP – BASED THERAPY (WITH INDIVIDUAL INDUCTION AND COUNSELLING)

Group – based therapy through weekly support centers forms the crux of our patient – oriented services. While making the program cost – effective, it enables individuals from different walks of life to come together and share a platform to motivate each other living through a chronic illness. It encourages them to participate in their own rehabilitation and fosters an environment of learning and compliance. This set-up also promotes optimal resource – utilization which meets the challenge of inadequacy of allied health specialists for Parkinson’s care. The paradigm additionally facilitates individual counselling at the time of induction into the organization and individual consultation on a need basis.

What effect can it have on an individual with Parkinson’s?

With the increase in the number of elderly people, the incidence of neurological conditions is on the rise. An important objective of the PDMDS has been to spread awareness about Parkinson’s disease, as little is known about this condition amongst the masses. Thus, the PDMDS has focused on sensitizing people in various ways.

The PDMDS provides sensitization and educational programs about neurological conditions in the elderly population, particularly dementia, Alzheimer’s, Parkinson’s, and stroke so as to promote healthy ageing. This has also enabled the organization to reach out to those PwPs and their families who may not have access to multidisciplinary care for their condition. This can result in early diagnosis, better care and management and reduce the impact of the burden of these conditions on the patient and their family.

What would you like to see as a future goal for your programs?

“At the PDMDS, we firmly believe in our motto “TOGETHER WE MOVE BETTER” and strive to collaborate with like-minded individuals and organizations to further our reach and meet the unmet needs of the Parkinson’s community in India.”

Dr. Bhim Sen Singhal