During this time, the Parkinson’s community comes together to raise awareness about the challenges of living with this condition and to inspire meaningful action. This year’s theme focuses on reclaiming “the spark”, representing the energy, hope, and determination that fuels the global Parkinson’s community. The theme encourages people to share their personal stories and join forces in the collective mission to end Parkinson’s disease.
While we take the time to commemorate the Parkinson’s Awareness Month, this neurological disorder remains widely misunderstood, especially in our African context.
Too often it goes undiagnosed due to some of its symptoms mistakenly attributed to normal ageing.
The lack of public awareness contributes to stigma and misconceptions which further delays crucial treatment and support for those affected.
Unfortunately, the stigma in turn results in social isolation, depression, and anxiety, further diminishing the quality of life for patients.
As such greater awareness is required surrounding the cause, effect and management of the disease.
What is Parkinson’s disease?
Parkinson’s disease is a progressive brain disorder that leads to unintended or uncontrollable movements, such as shaking, stiffness, and difficulties with balance and coordination.
It results from the death of neurons (nerve cells) in the brain area controlling movement.
These neurons typically produce dopamine, a crucial brain chemical that regulates body movement. The reduction in dopamine is responsible for many of the disease’s symptoms.
Early warning signs may include a slight tremor in one hand, smaller handwriting, loss of smell, sleep disturbances, and a softening or slurring of speech.
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While the exact cause of nerve cell death is unknown, most experts believe it involves exposure to environmental toxins like pesticides, as well as genetic factors.
While there is no cure for Parkinson’s disease, symptoms can be managed with medications like Levodopa, which stimulates brain cells to produce dopamine, or through deep brain stimulation via surgery.
However, the cost and availability of these treatments remain challenging for many African patients.
Global and Local Impact
Parkinson’s is becoming an increasing public health concern due to its association with older age (above 50 years) and increasing life expectancy.
Worldwide, over 10 million people live with Parkinson’s disease, and projections estimate this number will exceed 25 million by 2050.
Data in Africa is less clear, but a recent review of sub-Saharan African studies reported approximately 7 to 67 cases per 100,000 people.
These figures are higher among individuals over 50 and among men.
Challenges in Kenya
In Kenya, Parkinson’s disease is not widely recognized, and symptoms are often mistaken for normal aging or attributed to unknown disorders.
However, in recent years research into Parkinson’s disease has been increasing. One such research study, ‘Assessing Awareness, Perception, Diagnosis, and Treatment of Parkinson’s Disease in Africa,’ is underway to address these issues.
The study which involves Jaramogi Oginga Odinga University of Science and Technology (JOOUST), the African Population and Health Research Center (APHRC), and the Kenya Medical Research Institute (KEMRI), in partnership with the Kenya Ministry of Health seeks to identify tools for timely detection of Parkinson’s disease at primary care levels, map available management services, and assess challenges in accessing proper care.
Preliminary findings
The study’s findings are expected to guide government actions to improve care for individuals with Parkinson’s disease.
Preliminary findings from the study indicate that most primary healthcare facilities lack the capacity to detect and manage the disease.
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For instance, only 5% have treatment guidelines, and only 2% have the necessary medications. Ideally, neurologists should manage Parkinson’s disease effectively.
However, with only about 20 neurologists in Kenya, primarily located in major cities, junior doctors, clinical officers, and nurses often handle the care, despite lacking adequate training for timely diagnosis and treatment.
Consequently, over half of those living with Parkinson’s disease remain undiagnosed and untreated, leading to complications such as depression and disabilities.
Even when diagnosed, patients often struggle to find or maintain a consistent supply of treatment and regular follow-up care.
The prescribed medicine, Levodopa, is often scarce and unaffordable in both public and private pharmacies.
Call to Action
The journey begins with awareness. In communities where tremors and movement difficulties are often dismissed as normal aging or even attributed to spiritual causes, public education campaigns can transform understanding.
When neighbors, family members, and the patients themselves recognize early symptoms, treatment can begin sooner, preserving quality of life for months or even years longer.
Awareness alone isn’t enough. At rural health centers and urban clinics alike, many healthcare workers lack the training to identify and manage Parkinson’s effectively.
These frontline providers require standardized diagnostic tools and treatment protocols, that can extend quality care beyond the few specialized neurological centers to reach patients wherever they live.
Access to medication
The most heartbreaking challenge may be medication access. For many Parkinson’s patients, the life-changing benefits of Levodopa remain out of reach due to inconsistent supply and prohibitive costs.
Government action through tax incentives for suppliers could ensure these essential medications reach both public clinics and private pharmacies at affordable prices.
Underpinning all these efforts is the need for locally relevant research. The collaborative study on Awareness, Perception, Diagnosis, and Treatment of Parkinson’s disease currently underway across several Kenyan institutions isn’t merely academic – it’s generating the evidence needed to transform care systems. These findings will guide interventions not just in Kenya but throughout Africa, where similar challenges persist.
The path forward is clear, though not simple. Only through collective action – from policymakers to healthcare providers, researchers to community leaders – can we build a system where Parkinson’s disease is promptly diagnosed, effectively treated, and ultimately, better understood.
Authors
Gershim Asiki is a Senior Research Scientist at the African Population and Health Research Center, leading the Chronic Diseases Management Unit.
Chao Shete is a Communications Officer at the African Population and Health Research Center (APHRC).
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