Bringing Parkinson’s awareness to underserved rural communities

Since my father’s passing last year, I’ve continued to reflect not only on the pain of loss (which has begun to subside), but also on the many hidden realities we faced during his Parkinson’s journey. Lately, my thoughts have returned to the place where it all began — our quiet village in southeastern Nigeria — and the haunting question: What if we hadn’t known what Parkinson’s was?

In many rural communities across developing countries, that question isn’t hypothetical — it’s the reality.

Parkinson’s disease, with its tremors, stiffness, slowed movement, and cognitive fog, often goes unnamed, misunderstood, or misdiagnosed. It hides in plain sight — cloaked in silence, mistaken for old age, witchcraft, or spiritual attack. And the people suffering from it are too often ignored, hidden, or “prayed over,” rather than cared for.

Growing up, I heard elders refer to strange conditions with no medical explanation. “He’s been cursed,” they would say. “It’s not natural.” “It’s from the gods.” The symptoms were always the same: shaking hands, frozen limbs, lost memories.

Today, I recognize what they were describing, but back then, no one knew the name. And in places where illness has no name, there can be no treatment plan, no palliative care, no community understanding — only fear and maybe faith.

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Had my family not intervened when we did (although we should’ve done so earlier), and had we not had the privilege of education, city exposure, and relatively better financial means to relocate my father for treatment, he might’ve lived — and died — as just another rural statistic. His symptoms might have been spiritualized, his dignity eroded in the name of ignorance.

If Parkinson’s disease information had been more common and accessible in rural communities, perhaps we would have recognized the early signs more clearly and responded faster. We also might have been able to extract vital information from my father before full-scale dementia set in — a situation that, as I shared in a previous column, greatly hampered his chances and left our family struggling to fill critical knowledge gaps he could no longer recall.

The hidden numbers

Parkinson’s may be vastly underreported in rural communities — not because it’s rare, but because people don’t have the language, access, or support systems to identify it. Hospitals are distant, sometimes hours away by foot or motorcycle. Social media, where awareness campaigns thrive, is often inaccessible. In these areas, health education is a luxury, and rare diseases are a mystery.

I believe, from experience and observation, that the real Parkinson’s statistics are buried in the margins — in small villages, farm compounds, and family homes where symptoms go unspoken and stigma prevails. Without diagnosis, there’s no data. And without data, there’s no policy response.

To bridge this gap, awareness must become a mission, not just a message. We must “preach” Parkinson’s — not from medical journals or conference halls, but in churches, market squares, traditional councils, and village meetings. We must equip community leaders, pastors, imams, and teachers with the language of neurological illness so they can dismantle dangerous myths. The same cultural tools that can reinforce superstition can also be used to spread understanding, if only we are willing to translate science into the heart language of rural life.

In a world of smartphones and clinical trials, it is easy to forget that millions still rely on word of mouth and traditional authority as their primary sources of information. If Parkinson’s awareness is to be truly inclusive, then neurologists, nongovernmental organizations, and policymakers must step outside the hospital and listen to the voices of the countryside.

A call for grassroots advocacy

My father’s story taught me that love can move mountains — but education and access move systems. We need grassroots health advocacy models that include:

• culturally sensitive Parkinson’s education materials
• community-based screening initiatives
• mobile health units or partnerships with rural clinics
• training programs for community health workers
• spiritual leaders trained in recognizing disease symptoms.

Because, in these underserved rural communities, the first responder is not a nurse. It’s a neighbor. A sibling. Someone like you or me, unsure of what they’re seeing, afraid to name it, and uncertain where to turn.

Honoring the unseen

I write this not only for my father but also for the countless others whose symptoms were never documented, whose conditions were misattributed, and whose last days were spent not understanding what was happening to them. I write for those whose illnesses had no name, and whose pain was folded into folklore and prayer.

We owe it to them — and to ourselves — to lift the veil, name the illness, and meet people where they are. Parkinson’s disease should no longer be a hidden condition for rural dwellers. The message must travel, even where the internet cannot.

Because every person, no matter where they live or how they worship, deserves to understand what is happening to their body — and to be cared for with dignity, not mystery.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.