What Parkinson’s rapid rise means for Rochester

Parkinson’s disease is often thought of as a condition that comes with age. But in recent decades, the number of people living with Parkinson’s is rising more quickly than can be explained by aging alone.

A recent global analysis published in The BMJ estimates that more than 25 million people worldwide could be living with Parkinson’s disease by 2050, more than double the number in 2021. Even allowing for uncertainty in those projections, the direction is clear. Parkinson’s is becoming one of the defining neurological challenges of our time.

In clinical practice, this shift is already visible. More patients are being diagnosed, and more families are navigating the long arc of the disease. In Rochester, where specialized movement disorders care draws patients from across a broad region, these trends are already apparent in our clinic. What is less visible, but equally important, is how often Parkinson’s is misunderstood.

Most people associate Parkinson’s with tremor. Tremor is one feature of the disease, but it is not the whole story. Parkinson’s affects movement, but also sleep, mood, cognition, digestion, and other body systems. It unfolds differently in each person, which makes both diagnosis and care more complex than many realize.

That complexity matters, especially when it comes to the timing of diagnosis. By the time the most recognizable motor symptoms appear, a substantial portion of the brain’s dopamine-producing cells have already been lost. In other words, what most people see as the beginning of Parkinson’s is often well into its progression.

Why timing matters

This has led to a growing focus on identifying Parkinson’s earlier, before those visible symptoms appear.

For many patients, the earliest signs are not motor problems at all. Changes in sleep, a reduced sense of smell, constipation, or subtle shifts in mood can precede a diagnosis by years, even decades. These symptoms are easy to overlook or attribute to other causes, and most people do not associate them with a neurological condition.

Research is beginning to make these earlier stages more visible. Advances in biomarker testing, including tools that detect abnormal proteins associated with Parkinson’s, are helping researchers identify the disease process sooner than was previously possible. At the same time, wearable technologies, such as smartwatches, and mobile devices are being studied as ways to track changes in movement and function over time, offering a more continuous picture of how symptoms evolve.

Earlier recognition does not yet mean prevention or cure. But it does change the conversation. It allows patients and clinicians to plan, to begin treatment earlier, to participate in cutting-edge research, and to connect individuals with the kinds of specialized care and support that can make a meaningful difference in quality of life.

It also reframes how we think about Parkinson’s itself. Rather than a condition that begins with a tremor, it becomes a disease with a long and often invisible lead-in, one that requires greater awareness from both the public and the medical community.

The variability of Parkinson’s is one of the reasons specialized care matters.

No two patients experience the disease in exactly the same way. Some may live for years with relatively mild symptoms, while others face more rapid progression or more complex challenges. Treatment decisions often require careful adjustment over time, balancing medications, managing side effects, and addressing symptoms that extend well beyond movement.

This is where movement disorders specialists play a distinct role. These clinicians are trained to recognize the nuances of Parkinson’s and related conditions, and to tailor care to the individual rather than relying on a single approach. In many cases, care involves not just a physician, but a team that may include non-physician providers, physical therapists, occupational therapists, speech therapists, nurses, counselors, and social workers.

That team-based approach is especially important as the disease progresses. Parkinson’s is not only a condition that affects patients, but one that reshapes the daily lives of families and care partners. The need for guidance often grows over time, and many individuals do not seek out additional support until those needs become more acute.

Access to this kind of care is not evenly distributed. While some regions, including Rochester, have well-developed programs, many communities have limited access to specialists or coordinated services. As the number of people living with Parkinson’s continues to grow, this gap between need and access is likely to become more pronounced. Efforts to expand access, including the use of remote monitoring and emerging technologies, may play an important role in bridging that gap over time.

What this means for Rochester

For Rochester, these trends are not abstract.

This is a community with a strong foundation in neurology and clinical care, and with that comes both opportunity and responsibility. As the number of people living with Parkinson’s grows, so too does the need for awareness, earlier recognition, and access to multidisciplinary care that reflects the complexity of the disease.

That begins with a broader public understanding of what Parkinson’s is and what it is not. Recognizing early signs, seeking evaluation sooner, and connecting with specialized care can change the course of how individuals experience the disease. It also helps families prepare for what lies ahead, rather than reacting only when needs become urgent.

At the same time, the growing prevalence of Parkinson’s raises larger questions about how communities support those living with chronic neurological conditions. Care partners, in particular, often carry a significant and largely unseen burden. As more families navigate Parkinson’s, ensuring that support systems extend beyond the clinic will be increasingly important.

There is no single solution to a challenge of this scale. But as Parkinson’s becomes more common, communities like Rochester will need to recognize it earlier, understand it more fully, and build the kinds of support that allow patients and families to live with it more effectively.

Meeting that challenge will require a community commitment to advancing knowledge about Parkinson’s disease and supporting those who live with it.

Jamie Adams M.D. is associate professor of neurology and chief of the Department of Neurology’s Movement Disorders Division at the University of Rochester.

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