Parkinson's cases rise as policy gaps persist

From left: Occupational therapist Michael Amara, Agnetta Opiti who has been suffering from Parkinson's disease since 2005, Prof Francis Okere and Irene Obuya Director of Nyanza Parkinson's support group during an interview in Kisumu, on April 24, 2025. [Olivia Odhiambo/Standard] Once regarded as a condition primarily affecting white populations, Parkinson's disease is now becoming more prevalent in African communities, including Kenya. Patients and health professionals are sounding the alarm over its increasing visibility, as well as the lack of awareness, treatment options, and support. Parkinson's disease is a neurological disorder that affects movement, mental health, sleep and overall well-being. Despite being widely misunderstood and under-recognised, a growing number of what are now called "Parkinson's warriors" are stepping forward to advocate for better care and visibility of the disease. Agnetta Opiti was diagnosed with Parkinson's disease in 2005. At the time, the condition was unfamiliar to many in her community, and even her family struggled to understand what she was going through. "Why do you walk slowly? Why do you walk like that? she recalls her husband asking, confused and frustrated. I was the first person in that region to be diagnosed with this disease, so he imagined all sorts of things," says Opiti, reflecting on the tensions her condition created at home. A teacher by profession, Opiti, says her ability to carry out daily tasks - walking, cooking, even speaking-deteriorated as her symptoms progressed. There was no known history of Parkinson disease in her family. "When this disease hit me, I could no longer walk upright like everyone else. I slowed down in everything-walking, cooking, even doing basic chores. Tasks that once took 30 minutes now stretched to an hour or more," she shares. She described experiencing intense tremors, severe mood swings, a desire to isolate herself, and a "heavy tongue" that made speaking difficult. While medication was necessary, it also left her feeling sluggish. Her job suffered too-slowed speech and shaky handwriting made teaching nearly impossible. "This disease affects every aspect of our lives, and there's a great need for awareness," she says. "Even after my diagnosis, I had to keep working to provide for my family." Without public education on the condition, many in her community initially believed she had been bewitched. Michael Amara, an occupational therapist with the Kisumu County Department of Medical Services, describes Parkinson's as a neurodegenerative disorder that affects the brain's ability to produce dopamine-a key neurotransmitter responsible for movement, balance, motivation and emotion. "When dopamine production is disrupted, all of these functions are affected," he explains. "Parkinson's typically presents with symptoms such as tremors, stiffness, rigidity, poor balance, incoordination and reduced movement. As a result, it can significantly impair a person's ability to carry out even the simplest daily tasks." He notes that although Parkinson's was once considered a disease of the elderly, it is now increasingly being diagnosed in younger individuals-as early as age 35. "This is why sensitisation is so important," he explains. "It now appears in childhood or mid-adulthood, and while people may notice symptoms like tremors or stiffness, they often can't identify them as Parkinson's." The disease typically progresses through five stages-starting with mild symptoms and gradually advancing to severe disability requiring full-time care. "It's crucial that we raise awareness across all these stages," he adds. "Parkinson's is often misdiagnosed because it presents a wide range of symptoms-like anxiety, depression, sleep disturbances, impaired movement and speech difficulties." Amara also points to possible causes including genetics and exposure to pesticides, especially among farmers. Despite having no cure, he says multidisciplinary care involving neurologists, occupational and speech therapists, and support groups can help manage symptoms and slow the disease's progression. Support networks are growing, including in Kisumu, Nairobi, Mombasa and Kilifi. Irene Obuya, the Nyanza coordinator for a Parkinson's support group, says the Mombasa chapter is already formally registered, while Kisumu and Nairobi are working to establish a joint trust. "Through the trust we plan to formally push for adoption of a policy tackling specifically Parkinson's disease," she says. Obuya says the cost of medication remains a major burden, with one tablet costing Sh150 and patients often needing several drugs monthly. The network is lobbying for the drugs to be exempted from VAT and formally recognised as disability treatment. She also notes that while the network started with just five members, it now has 50 registered patients and continues to grow, with two new registrations every week. "The challenge is that the condition is different from one patient to another so the management is also different. The causes of the disease are also guesswork or based on ongoing research," she adds. Most patients registered with the network come from Kisii (40 per cent), followed by Western Kenya (30 per cent), Kisumu (29 per cent), and Migori (1 per cent). Despite the rising cases, Kenya has no official policy dedicated to Parkinson's. Researchers at Jaramogi Oginga Odinga University of Science and Technology (JOOUST) are working to fill that gap through a national study on the prevalence of the disease and the readiness of health facilities to manage it. "From the study, we want to know about the needs of the people who take care of patients with Parkinson and what they require going forward. We want to understand the needs of these patients, how their journeys have been, dates of diagnosis and treatment journey. We also want to know how Parkinson impacted on their lives," says Dr Dickens Omondi, the study's principal investigator. The study, which is being carried out in Kenya and Senegal, is a collaboration between JOOUST, KEMRI and the Africa Population Health Research Center. Prof Charles Obonyo from Kemri notes the urgency of the research: "We do not have data and that is why we are doing research to generate it." He adds that while Parkinson's is more common in older men, environmental exposure-especially among farmers and certain athletes-is a factor. There is no known cure, and available drugs only manage symptoms. JOOUST's Prof Francis Okere, whose department supports the patient network, calls for a sustained awareness campaign: "We do not want our people to suffer from a disease that can be managed."

Parkinson's cases rise as policy gaps persist

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