ParkinsonsZA Mover and Shaker is pioneering a new path for patients in SA – Rakesh Harribhai

The prevalence of Parkinson's disease (PD) is rising, with 1 in 37 people expected to receive a diagnosis according to Parkinson's UK. This increase is largely due to growing and ageing populations. In Africa, the relatively younger demographic leads to a lower prevalence, but the continent faces unique challenges in diagnosing and treating PD. Neurologists are scarce, and in South Africa, they are mostly limited to the private healthcare sector, leaving much of the population with insufficient access. Stigma tied to beliefs in witchcraft further isolates individuals with Parkinson's. Parkinson's ZA, a non-profit organisation, aims to improve lives impacted by Parkinson's disease. Founded by Rakesh Harribhai, inspired by his late mother's experience, the organisation has adapted an Indian model more suited to South Africa's healthcare context. Currently operating in Durban, Parkinson's ZA offers diverse activities and plans to expand to Cape Town and Johannesburg, beginning with a care home in Pretoria East. Harribhai said he witnessed how members were isolated, withdrawn, and hesitant and have since embraced activities like table tennis and group outings to the beach..Sign up for your early morning brew of the BizNews Insider to keep you up to speed with the content that matters. The newsletter will land in your inbox at 5:30am weekdays. Register here..The seventh BizNews Conference, BNC#7, is to be held in Hermanus from March 11 to 13, 2025. The 2025 BizNews Conference is designed to provide an excellent opportunity for members of the BizNews community to interact directly with the keynote speakers, old (and new) friends from previous BNC events – and to interact with members of the BizNews team. Register for BNC#7 here..If you prefer WhatsApp for updates, sign up to the BizNews channel here..Watch here.Listen here.Highlights from the interview.Rakesh Harribhai, the founder of ParkinsonsZA, a non-profit organisation, is working to improve the lives of people affected by Parkinson's disease (PD) in South Africa. Inspired by his mother's struggle with PD, Harribhai established the organisation to provide better support and resources for those with the disease, especially in underserved areas. South Africa faces significant challenges in diagnosing and treating Parkinson's, due to limited access to neurologists, especially in the public healthcare sector, and cultural stigma, including beliefs linking the disease to witchcraft..ParkinsonsZA, launched two years ago in Durban, adapts a model developed in India to suit South Africa's healthcare context. The organization offers activities like table tennis and social outings to foster community and improve the quality of life for those with PD. Their programs focus on physical activity and mobility, which are key in alleviating symptoms. The organisation also promotes independence in daily tasks, such as personal hygiene and mobility, through accessible exercises and therapies..Plans are underway to expand to other cities, including Cape Town and Johannesburg, and to establish a new support group in Pretoria East. Despite operating on limited resources, ParkinsonsZA is committed to sustainable growth, relying on community donations to fund its activities. Harribhai also advocates for greater awareness of Parkinson's in South Africa, emphasising the need for local role models and more accurate data on the disease's prevalence. He hopes to continue growing the support network and reduce the social isolation often faced by those with Parkinson's..Edited transcript of the interview.Linda van Tilburg (00:02.254).As Parkinson's disease becomes more common, especially among older people, its impact is increasingly significant across diverse cultural and ethnic groups in South Africa and the wider African continent. A key player in supporting those affected by this condition is the non-profit organisation ParkinsonsZA. Joining us today is their founding director, Rakesh Harribhai, to chat about how ParkinsonsZA is making a difference in the lives of individuals and families dealing with Parkinson's disease. Howzit, Rakesh, thanks for joining us..Linda van Tilburg (00:49.967).So,why did you get involved with ParkinsonsZA?.Rakesh Harribhai (00:54.553).My connection to the disease comes from my mum, who had Parkinson's. It was around 2005 while I was working in Johannesburg when I got the news. The problem with Parkinson's and many geriatric diseases is that they're often just chalked up to old age. So, my mum had to deal with the disease with not much support, making it quite a lonely journey for her, the family, carers, and friends around those with Parkinson's. I realised I was fortunate to have access to resources and information to visit, even though she was in Durban and I was in Joburg. I attended every neurologist appointment, and we managed to have a good caregiver. After she passed in 2021, I thought this was something I could give back to the community and to try to establish a big enough support system for people with Parkinson's, similar to what's available in first-world countries..Linda van Tilburg (02:22.629).How did you get it up and running, and has it been around for just a couple of years?.Rakesh Harribhai (02:32.569).Interestingly, one of the good things about COVID is that the world became smaller. Starting a nonprofit means there's no issues with competition, so everyone is very willing to help. I started with Parkinson's Europe, then Parkinson's UK, and went on to the Parkinson's Foundation in the US, which has many types of nonprofits dealing with Parkinson's. Through this journey, I connected with the Parkinson's Disease and Movement Disorder Society in India. I recognised that South Africa needs a rudimentary kind of solution that is similar to the healthcare system in South Africa..Much like South Africa, India has a very broken public healthcare system, so I reached out to Maria Barretto from the Parkinson's Disease and Movement Disorder Society in India. They've developed an evidence-based program over 20 years, spreading it across 60 centres in India. The programme includes physiotherapy, occupational therapy, and speech therapy, designed so it doesn't require professionals in scrubs to teach it. It's about helping people be more independent with personal hygiene, mobility, getting in and out of bed, in and out of the car and other everyday tasks..Linda van Tilburg (04:49.09).Is all of this information available on your website?.Rakesh Harribhai (04:52.633).We have a lot of information on our website. As we have a very thin organizational structure, we are relying on community donations to keep our costs low. I handle many organisational issues alongside my day job and we have a programme manager based in Durban. We offer three programmes there..On Monday, we table tennis session for the community, the PDMDS program on Thursdays, and a Friday program at the Bet Shalom Home. Our website guides visitors to various community partners, like Parkinson's Europe and Parkinson's UK, where there's more comprehensive information. We intentionally avoid offering too much medical information, focusing instead on getting people with Parkinson's active. Interestingly, one of the biggest breakthroughs in Parkinson's research is that aerobic exercise tends to ease symptoms. So, we highlight activity-based resources, stories of people thriving with Parkinson's, and encourage people to become part of a supportive community..Linda van Tilburg (07:13.123).What's the plan for expanding to other cities in South Africa?.Rakesh Harribhai(07:21.165).We started two years ago in Durban, with the aim of replicating our model in other South African metros—specifically Cape Town and Joburg, and expanding into peri-urban areas. Since it's a basic model, we can work with physiotherapists, bio kineticists, trainers, or nursing sisters to replicate the program. We're currently talking with a retirement home and hope to start a new support group in Pretoria East as early as March. At our 2022 launch at the Durban Country Club, people were initially quite reserved, but two years later, there's a thriving community that enjoys activities like table tennis and small group outings to the beach. Michael J. Fox once said that people with Parkinson's are the real experts, so we've created a forum for sharing tips and experiences..Rakesh Harribhai(09:46.522).We've seen great improvements in social confidence and mobility through the program, which is why we're keen to expand to Pretoria East and eventually to Joburg and Cape Town. The demand is huge because Parkinson's is the fastest-growing neurodegenerative disease worldwide. I personally manage our contact email, and if we had the resources, we'd definitely do more. But we're committed to growing sustainably, recognising the many social challenges in South Africa, so raising funds from the community is essential for us..Linda van Tilburg (10:52.268).You mentioned Michael J. Fox. It's vital when celebrities talk about this. He even played the guitar at a Coldplay concert. Are there local figures in South Africa championing this cause?.Rakesh Harribhai(11:16.599).We definitely need more people to come forward. Most South Africans still reference Michael J. Fox and Muhammad Ali but don't have local personalities to relate to. We need someone with an evangelistic approach to raise awareness, like Michael J. Fox. He makes appearances and keeps the conversation going. We need more of that here to show that anyone can live fully with Parkinson's, build friendships, and have role models..Linda van Tilburg (12:20.036).What about data? How many people in South Africa have Parkinson's?.Rakesh Harribhai(12:25.967).That's the unfortunate part. We don't have precise data on how many people here are living with Parkinson's. We're working with South African disability and epilepsy organizations to encourage better medical recording. We're only aware of those diagnosed, usually those with medical insurance. Many remain undiagnosed due to lack of access to healthcare or specialists. There's also a stereotype of Parkinson's being a 60-something-year-old white male's illness, but in our Durban support group, it's around a 50-50 male to female ratio. Additionally, some local communities still view Parkinson's as witchcraft, leading to social isolation..Linda van Tilburg (14:18.534).Are there any clinical characteristics unique to Africans or Indians in South Africa compared to what we know from Europe or America?.Rakesh Harribhai(14:31.437).There's plenty of research into genetic markers, especially through the Michael J. Fox Foundation. I'm not too clued up on how it affects different communities, but there are ways to identify genetic predispositions..Read also:.Hersov's 'Milei Moment' – Exposing Uber Truths to save South AfricaHow a new party could remake South Africa – Sean McLaughlinSouth Africa's burning question — Can the centrist glue hold the GNU together?

ParkinsonsZA Mover and Shaker is pioneering a new path for patients in SA – Rakesh Harribhai

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