In Kisumu, a community of resilient individuals is tackling Parkinson’s disease, one of the most misunderstood neurological conditions. Despite being largely under-recognized, these individuals, known as Parkinson Warriors, are determined to raise awareness, provide support, and advocate for better care for those affected by the condition.
Parkinson’s disease is a progressive, degenerative disorder of the nervous system that affects movement. It causes nerve cells in parts of the brain to weaken, become damaged, and die, leading to symptoms like tremors, stiffness, impaired balance, and difficulty with movement. Though there is no cure, treatments can help manage symptoms and slow progression. With the right support, many people with Parkinson’s can live normal lives and continue to work.
However, in many communities, individuals with Parkinson’s face stigma and discrimination. They are often misunderstood and unjustly labeled as drunk or bewitched. This lack of understanding leads to marginalization, especially in the workplace and within their communities. Chairman Richard Oketch of the Kisumu Regional Parkinson’s Support Group, who himself has Parkinson’s, emphasized the importance of educating the public about the condition and breaking these misconceptions. He noted that many people with Parkinson’s are not only surviving but also living with the condition and working to raise awareness.
The Kisumu Regional Parkinson’s Support Group, which holds bimonthly meetings, provides a platform for people with Parkinson’s, caregivers, doctors, neurologists, and healthcare providers to come together. These meetings offer a safe space for individuals to share their experiences, learn from each other, and receive support from professionals. Oketch and other members of the group are working tirelessly to educate the public and offer hope to those living with Parkinson’s.
Research is ongoing to better understand Parkinson’s disease and find a cure. However, treatment options remain limited, primarily focusing on relieving symptoms like tremors and rigidity. Access to necessary medications is inconsistent, and the cost of treatment can be prohibitive, especially for older individuals who may no longer be working. Prof. Charles Obonyo, a researcher from the Kenya Medical Research Institute (Kemri), highlighted that many individuals over the age of 60 struggle to afford treatment, and the government needs to implement policies that ensure affordable care for older adults.
Another significant challenge is the burden of caregiving. Most caregivers are informal, unpaid family members who provide essential support to people with Parkinson’s. However, caregivers often lack resources, training, and recognition for their efforts. Prof. Obonyo emphasized the need for policies that support caregivers and ensure that people with Parkinson’s receive the care they deserve.
The lack of data on Parkinson’s disease is another major issue. In Kisumu, more than 100 patients are registered with the support group, but the actual number of individuals affected by the disease is unknown. To address this, researchers from Kemri, Jaramogi Oginga Odinga University of Science and Technology, and the African Population Health Research Centre are conducting studies to better understand the prevalence of Parkinson’s and improve access to care. The research team is screening individuals over the age of 60 to identify those with the disease and connect them to treatment. Additionally, a clinic at the Aga Khan Hospital in Kisumu offers subsidized treatment, linking patients to neurologists at the facility.
Principal investigator Omondi Dickens, from Jaramogi Oginga Odinga University of Science and Technology, is working to fill the knowledge gaps surrounding Parkinson’s. Their research, in collaboration with Kemri and the African Population Health Research Centre, is focused on raising awareness, understanding the prevalence of the disease, and improving access to care. Omondi and his team are conducting community surveys in Kisumu and Nairobi to learn more about the extent of Parkinson’s in the population. They are also developing tools for early diagnosis and working to ensure that healthcare facilities are equipped to provide adequate care for Parkinson’s patients.
Despite the challenges, the Parkinson’s community in Kisumu is united in their efforts to raise awareness, provide support, and advocate for better care. The ongoing research and advocacy work are crucial in ensuring that individuals with Parkinson’s disease receive the care and recognition they deserve.
