In Santo Domingo, the visible tremors that mark Parkinson’s disease are only the outermost layer of a far more complex, hidden struggle. For many working-age patients, these involuntary movements are often concealed – hands stuffed deep into pockets, or clasped tightly together to hide the telltale shaking. What lies beneath this careful hiding is a frozen rigidity that has derailed personal plans and lifelong dreams, a slowness of movement that cannot keep up with the breakneck pace of modern cities that rarely pause to accommodate their most vulnerable citizens. This unmet need creates a heavy emotional weight that reshapes entire households.
For countless Dominican families, Parkinson’s is far more than a clinical neurodegenerative diagnosis. It is a life-altering experience that upends daily routines, redefines family bonds, and all too often forces patients and their loved ones into suffocating silence. Faced with pervasive social stigma and widespread fear of being treated differently, the Dominican Foundation Against Parkinson’s (Fundación Dominicana Contra el Mal de Parkinson) has emerged as a critical lifeline – a sanctuary that offers support, guidance, and unwavering defense of the dignity of people living with the condition.
### A Crisis That Extends Far Beyond the Clinical Diagnosis
Parkinson’s is a progressive neurodegenerative disorder that gradually robs patients of control over their movement, their personal autonomy, and in many cases, their emotional stability. In the Dominican Republic, a critical lack of centralized, accurate epidemiological data and a fragmented, under-resourced care system have drastically worsened the public health crisis. Most patients do not seek medical consultation until their disease has reached an advanced stage, by which time significant physical and cognitive decline has already occurred, irreparably damaging both the patient’s quality of life and that of their entire family.
Per data from the World Health Organization, Parkinson’s ranks as the second most prevalent neurodegenerative disorder globally. The condition affects roughly 1 in every 100 people worldwide, totaling an estimated 10 million people living with the disease. In the Dominican Republic, a national targeted census of Parkinson’s patients remains an unfulfilled policy goal, but data from leading neurology clinics at major public hospitals including Salvador B. Gautier and Cabral y Báez confirms a sharp, underreported reality: Parkinson’s is no longer solely an illness affecting older adults. Compounding this trend are widespread gaps in the national healthcare system, from inconsistent access to life-sustaining medication to a near-absence of structured advanced therapy programs.
A key structural failure exacerbating patient hardship is the exorbitant cost of prescription Parkinson’s medications, paired with extremely limited insurance coverage through the national public health system. This leaves many low- and middle-income patients unable to afford the treatment that slows disease progression.
### Loneliness: The Invisible, Debilitating Symptom
Beyond the visible physical symptoms of tremors and muscle rigidity, there is another, far less visible symptom that causes profound pain: chronic loneliness. Many patients experience severe social isolation, a devastating loss of independence, and a deep, persistent sense of abandonment. According to foundation leaders, it is extremely common for people with Parkinson’s to feel completely helpless, especially when they lack formal support networks or access to accurate, reliable information about their condition.
This pervasive loneliness is both social and emotional, driven by three core systemic failures: widespread public misunderstanding of how Parkinson’s presents and progresses, deep-rooted social stigma surrounding visible neurological symptoms, and a severe lack of accessible, inclusive public spaces that accommodate people with movement disorders.
### The Silent, Unrecognized Burden on Family Caregivers
Every patient’s journey is shouldered in large part by their family, who bear the brunt of the disease’s daily impact. Most often, informal caregivers are immediate family members, who take on an enormous physical, emotional, and financial toll to support their loved one. As a patient’s autonomy gradually erodes, caregivers must provide constant 24/7 assistance, restructure or abandon their own professional careers, and navigate severe psychological exhaustion. The foundation emphasizes that Parkinson’s does not only affect the individual patient – it upends their entire support network, creating a domino effect that reshapes core family dynamics.
### The Foundation’s Model: Care, Education and Collective Action
Against this challenging landscape, the Dominican Parkinson’s Foundation has built a community-centered intervention model built on three core pillars: comprehensive care, public education, and social integration.
For direct patient care, the foundation delivers an interdisciplinary approach designed to preserve quality of life, including medical guidance from specialized neurologists, structured physical rehabilitation, ongoing psychological support, and assistance navigating barriers to accessing affordable medication.
Through education and awareness initiatives including public lectures, community workshops, and national outreach campaigns, the organization works to educate the general public about Parkinson’s pathology, debunk common harmful myths surrounding the disease, and encourage life-changing early diagnosis. Every year during Parkinson’s Awareness Month, the foundation hosts public events ranging from film screenings to community gatherings and group therapeutic sessions that bring together patients, caregivers, and members of civil society to build connection.
Finally, the foundation’s social integration programming uses events like charity walks, recreational outings, and solidarity running events to pursue one core goal: breaking the cycle of isolation for patients. These community gatherings bring much-needed visibility to people living with Parkinson’s and build broader public empathy for their experiences.
### Unmet Demand and Persistent Systemic Challenges
Despite the foundation’s extraordinary and life-changing work, monumental systemic challenges remain. These include a national shortage of specialized Parkinson’s care centers, extremely limited operational and funding resources, insufficient insurance coverage for life-sustaining treatments, and persistently low public awareness of the scope of the crisis in the Dominican Republic. While the foundation currently serves hundreds of patients across the country, its leadership openly acknowledges that patient demand far outpaces the organization’s operational capacity.
### More Than an Organization: A Network of Hope
Since its founding, the Dominican Parkinson’s Foundation has pursued a goal far deeper than just delivering clinical care: restoring the dignity, sense of community, and feeling of belonging that the disease so often strips away. Its approach unites patients, families, and healthcare providers into a connected network that does not just treat the disease – it humanizes the experience of living with Parkinson’s.
While Parkinson’s in the Dominican Republic is still defined by widespread public ignorance, crippling financial barriers, and systemic isolation, it is also a story of extraordinary resilience. Thanks to the work of organizations like the Dominican Parkinson’s Foundation, a growing public space has opened where patients are no longer invisible. Instead, they are finally being heard, accompanied, and understood by broader society. Ultimately, the true fight against Parkinson’s is not limited to medical research and treatment – it is a social, emotional, and deeply human struggle that requires collective action.
### Personal Stories: Life Beyond the Statistics
Clinical statistics gain new meaning when paired with the lived experiences of patients living “on pause,” their lives slowed but not stopped by Parkinson’s.
Nathaly, 42, a mother of two and a former attorney, was at the peak of her career, balancing legal work with raising her young daughters, when she noticed her right hand began shaking uncontrollably during a client meeting. “People told me it was just stress, but I knew something inside my body had gone wrong,” she recalls from her home in Santo Domingo Este. At just 35 years old, she received a diagnosis of early-onset Parkinson’s. Gradually, she was forced to leave the courtroom and step back from her private practice. Without private health insurance, the cost of her medications and specialist consultations became unsustainable. “Public insurance covers practically nothing, and on top of that there’s school tuition for my girls… that broke me the most. I graduated with honors while raising my kids, I’ve always been strong, but honestly some days this fills me with depression or pure rage… I don’t know.” Nathaly’s story shatters the persistent stereotype that Parkinson’s only affects older adults. She faced devastating social consequences: she lost her job due to her employer’s lack of accommodation, and endured unfair judgment from people who misread her symptoms as anxiety. “Parkinson’s steals your fluidity of movement, but the hardest part is that people look at you like you’re broken. I am still here. My mind still works, even if my body takes longer to do what I want it to.”
At 70, Doña Berkys fights a daily battle in her modest home in the Los Ríos neighborhood of Santo Domingo. Every morning at 7:30, her greatest goal is simply to pour and drink a cup of tea by herself, without spilling anything – or feeling like she has lost the independence that defined her for decades. This small, lifelong ritual is a pleasure Parkinson’s has stolen from her. “Some days my legs feel like lead, and other days they just stop moving entirely,” she explains with a faint smile, her voice barely a whisper. For her, the healthcare crisis is personal: the cost of her medications, including levodopa and other core treatments, consumes more than half of her monthly income. The Dominican Republic lacks a formal, robust network of caregiver support or established public health programs for chronic neurodegenerative illnesses, leaving patients like Doña Berkys vulnerable to advancing rigidity and ineffective, underfunded public policy.
Mariana Cordero, 68, lives with advanced Parkinson’s, and her story is also the story of her daughter Elena, who quit her full-time job to become her mother’s round-the-clock caregiver. The domestic toll of Parkinson’s is one of the most underrecognized, painful facets of the disease. “When my mother was diagnosed, all of us got sick in our own way,” Elena confesses. Parkinson’s causes deep, gradual emotional erosion for entire families. “As the disease progresses, you find out who people really are; it shatters family harmony, all at once or piece by piece. Holiday gatherings get smaller and smaller, and the entire burden inevitably falls on one person.” “It’s not just about giving her a pill on time. It’s lifting her up when she freezes mid-walk down the hallway, managing her depression, and watching the woman who was my everything, the towering figure who raised me, shrink until she fits tightly in my arms.” The absence of public adult day care facilities and formal government support networks turns caregiving into a heroic, lonely, and unrecognized labor of love.
Not all stories are defined by hardship, however. At 71, Carlos, who was diagnosed with Parkinson’s 16 years ago, has found that creative practice acts as a powerful form of medicine. Working from a small studio in his Zona Oriental apartment, he found that when he holds a book or writes along to the rhythm of music, his tremors and freezing spells subside. He made the decision that Parkinson’s would not end his social life or his love of creating. “Music, reading, and writing are my therapy. If I had let myself be consumed by hopelessness, I would have rusted away long ago,” he says, adjusting his posture to keep working on his fourth book. Carlos’s journey underscores the critical importance of mental balance and social integration for people living with the disease. His story is a call to action to build communities where patients are not isolated, but instead supported to maintain their autonomy through cognitive stimulation and active engagement.
### A National Call to Action
The impact of Parkinson’s transcends individual patients and families, creating an urgent national challenge for the Dominican Republic. From a healthcare perspective, the country faces an urgent need to decentralize specialized neurological care, which is currently concentrated almost entirely in the major cities of Santo Domingo and Santiago. On a policy level, there is a desperate need for dedicated protective legislation that guarantees affordable access to high-cost medications and advanced therapies, alongside full insurance coverage for comprehensive rehabilitation programs that prevent premature disability.
The country also needs dedicated public social integration spaces, specialized adult day care centers, and a functional, efficient national network of caregiver support. This would allow family caregivers to remain in the workforce, continuing to contribute to their households and to the broader Dominican economy.
Behind every global clinical statistic from the WHO, there is a Dominican person struggling to button their shirt, walking with the constant fear of falling, or yearning to be seen as a person beyond their symptoms. As a society, the core challenge is clear: even if people with Parkinson’s walk slower than most, we cannot afford to slow our progress in delivering the support and access to care that is their fundamental right.
By Dr. Marcia Castillo
Parkinson’s and Movement Disorders Specialist
Instagram: @dra.marciacastillo
