HOW and WHEN can we truly create a Global Parkinson’s Community?
An Indian perspective
200 years is an opportune time to evaluate the status of People with Parkinson’s (PWP’s) globally. From my perspective treatment ranges from undiagnosed on the one hand to the best possible medical and allied health therapies on the other.
I would like to share an Indian perspective, which I think represents the developing world. My perspective is based on my experience as CEO of the Parkinson’s Disease and Movement Disorder Society (PDMDS) India and my interaction with various Parkinson’s organizations as co-chair of the organizations committee of the 4th World Parkinson Congress.
The PDMDS was founded by Dr. B.S. Singhal a world-renowned neurologist practicing in Mumbai. He was driven by the reality that for India’s population of 1.2 billion people there were just 1,200 neurologists and therefore the need for an organization for PWP’s and their families.
The PDMDS began its journey with a need analysis of PWP’s in the Indian context. Results indicated that for most, knowledge was limited to a diagnosis and medication. The initial years of the PDMDS were full of questions and uncertainty. There were challenging issues from every stake holder: despondency and lack of motivation from PWP’s that stemmed from their total lack of understanding of Parkinson’s; skepticism from a majority of the medical and allied health professionals who questioned if any program could impact or improve quality of life; and lack of interest from every kind of financial sponsor be it individual or trusts. They were disinterested because they knew very little about Parkinson’s and those who knew turned us down as the limited funds available had to go to issues that were viewed as more pressing .
To improve the lives of PwP’s in India we had to develop a program that was multipronged and supported by evidence based strategies. On top of that we had to identify and prepare centers to deliver the program, train personnel, and raise awareness among PwP’s and the general public.
Design of the program involved research, the input of medical and allied professionals and, most importantly, the active engagement of PWP’s and their families, whose practical suggestions and feedback provided guidelines. They told us that the program needed to be taken to the people, to community halls that were accessible and cheerful, it needed to be simple and practical, with strategies that would impact their activities of daily living. The program developed includes education, multidisciplinary therapy and is delivered through a network of community based support groups. Therapy includes physiotherapy, speech therapy, counseling, strategies to improve cognition and the creative therapies of art and dance.
Our most recent addition, by far the most challenging, has been working in the urban slums of Mumbai, the rural and the tribal sector. In these communities people are not even aware that they have a neurological condition. Our work involves door-to-door identification surveys. In order to gain access and build trust in these communities, we trained people from the community to conduct these surveys. Medical camps are then held to diagnose the identified and provide treatment and rehabilitation programs.
What started as one center with five members in the city of Mumbai has grown to 17 centers in Mumbai, and expanded to five states in our country. We currently run 42 centers.
The impact of the program drives us to continue developing centers and to try and reach out to as many PwP’s in our country.
PDMDS and the World Parkinson Congress
In 2010 I had submitted two abstracts for the 2nd World Parkinson’s Congress in Glasgow and was fortunate to receive a travel grant that made my attendance possible. I was impressed with the significant work on the international level, but it also saddened me for the lack of services for PWP’s in India. The PDMDS was also given a booth at the exhibition. There were two significant events that impacted the recognition of the PDMDS. The first, Lizzie Graham, Gen. Secretary of EPDA, visited the booth to learn about our work and asked me to write an article’ for the EPDA news journal titled ‘Magic in Mumbai’. Second, Karen Northrop who was on the WPC organizations committee visited our exhibition booth. It was to her that I most vehemently voiced my views and questioned a ‘World Parkinson Congress’ with little or no representation of the Africans and Asians. This discussion urged her to speak to Eli Pollard and resulted in greater representation of Asians on the organizations committee. Attending the 3rd World Parkinson Congress in Montreal was a great learning experience and I was invited to speak at the Policy Forum. The opportunity to present your work at an international forum and the positive feedback is a tremendous source of motivation. The 4th World Parkinson Congress in Portland was even more exciting as I was involved in planning the first ever leadership forum and witnessed the inclusion of two amazing African women, Dr. Njideka Okubadejo from Nigeria and Hellen Mwithiga from Kenya.
My hope is that a forum like the World Parkinson Congress will continue to reach out to and raise awareness about PWP’s in countries that have little or no access to care. I hope that partnerships are forged between developed, developing and underdeveloped countries and that organizations from the developed world whilst seeking better treatment and programs for those they serve simultaneously reach out to organizations and PWP’s with few resources. It is when we reach this point that we can have truly created a Global Parkinson’s community.
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Maria Barretto, PhD presented at WPC 2013 and WPC 2016. She is the CEO of the Parkinson's Disease and Movement Disorder Society.
Watch her presentation at the WPC 2016 Leadership Forum
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