“Many people in Kenya are not aware that Parkinson’s disease exists”

We hear from Dr Maria Barretto, CEO of the Parkinson’s Disease and Movement Disorder Society in India, about how the organisation has expanded its efforts to raise awareness of the condition in Kenya

Tell us a bit about yourself and your connection to Parkinson’s.

I’m based in Mumbai, India. I have 40 years of academic and professional experience in psychology, mental health and education, and I hold a PhD in psychology. My work has focused on the development and management of not-for-profit organisations, and I’ve pioneered several local and international projects for different underserved populations.

As a psychologist from a developing country, my interest has always been in demystifying different conditions, responding to people’s issues and concerns, and presenting their conditions in terms that are easy to understand. In 2004, I became CEO of the Parkinson’s Disease and Movement Disorder Society (PDMDS), which aims to improve the quality of life of people living with the condition and their caregivers in India.

In 2020, we spoke to you about establishing PDMDS in India. Has anything changed about your work in India since then?

It has given me great joy and fulfilment to see the PDMDS family grow and flourish over the past few years, having weathered many storms – including a pandemic. Reconnection and regrowth now seem to be the themes of these new times!

Our work for Parkinson’s has been steadily carried out. These efforts have been directed towards developing programmes promoting healthy aging for the elderly and developing and replicating a rehabilitation programme for residents in care homes across the country.

Plans to expand our reach in the northeast areas of India are underway, and we are continuously working with individuals there to develop our understanding of the elderly, their awareness about Parkinson’s and the cultural differences that could guide our work. There is always so much to learn in order to adapt these programmes in various parts of India, but we have certainly come a long way since our inception.

Maria says she’s proud to have seen “the PDMDS family grow and flourish over the past few years.”

Why did you feel Kenya was a good candidate for PDMDS?

With the Parkinson’s community network that had already been built by Africa Parkinson’s Disease Foundation, it was a great starting point for us to begin our work. Like India, Kenya is a low- and middle-income developing country. It faces similar challenges dealing with the condition, such as difficulties in access to therapy and medications and general awareness around the condition.

Though culturally the view about Parkinson’s may be different, there is a similarity in the stigma associated with the condition – so the strategies we’ve previously developed to change mindsets about the condition are surely going to be effective in Kenya as well.

What are the most pressing issues concerning Parkinson’s awareness in Kenya?

Many people in Kenya are not aware that Parkinson’s exists. There’s very limited information available regarding what the condition is and how it can be managed. Much like in various parts of India, this often results in people with the condition remaining undiagnosed and being stigmatised – leading to challenges with access and affordability of medication.

Kenya has to embark on a journey where society can have an understanding of Parkinson’s. I’m optimistic that we can help provide effective solutions.

How have you established the PDMDS model in Kenya?

I realised during our group’s presence at the World Parkinson Congress that developing countries face similar issues when accessing quality care for Parkinson’s.

I often discussed the common challenges in India and Kenya with Hellen Mwithiga, CEO of the Africa Parkinson’s Disease Foundation. After sharing the initiatives PDMDS had undertaken, the idea emerged for us to replicate our organisation’s model in Kenya. Following a grant from the Edmond J Safra Foundation, our project became a reality.

We began by choosing Mombasa as the Kenyan city in which to launch our programme. We found an accessible venue for neuro-physicians and interviewed potential facilitators who could execute the programme.

The main focus of the work has been for professionals from PDMDS to train local personnel. Through this, participants have been able to understand the challenges of living with Parkinson’s and conduct weekly sessions following the programme’s multidisciplinary approach. They have also been able to identify and implement strategies to increase awareness around Parkinson’s.

What are some of the challenges you’ve faced? Have there been any highlights?

Since the initiation of the project, we have overcome a few hurdles. It was difficult to identify experienced healthcare professionals to conduct the programme at first, but through our experience, we were able to train medical staff.

It has also been difficult for some people with Parkinson’s to attend the sessions regularly due to distance and large travel costs. To help this, we have modified the sessions to be once a month and to last longer. We’ve also undertaken home visits to help make care accessible to more individuals.

Our team in Mumbai has taken the time to have continuous meetings and discussions with the personnel in Kenya to ensure that any apprehensions and doubts related to the program have been addressed. Sharing our experiences of delivering the programme in India has helped them understand the nuances immensely. Our content is constantly modified, and there is active collaboration, which is always effective.

The team in India and the team in Kenya have learned so much through this project. The mutual understanding and respect that has developed between the two teams has been the highlight. Though we are in different countries and continents, we all have the same vision: to improve the lives of people with Parkinson’s and their families.

What advice would you offer to people with Parkinson’s seeking support in Kenya?

As the programme is new, we do expect there to be apprehensions from people with Parkinson’s and their caregivers regarding the programme’s content and how it could benefit them.

We would like to encourage those living close to the centres to give the sessions a try and to attend as regularly as possible. The positive outcomes may not be apparent immediately, but as with our members in India, we have definitely seen a gradual improvement in their quality of life as a direct result of regularly attending our sessions.

We encourage them to follow our motto: together we move better. This supportive and educative environment can only be a beacon of hope for people living with the condition.

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