Nearly Half of Americans with Parkinson’s Don’t See a Neurologist: Expert Explains Why

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Parkinson’s disease is the second most common neurodegenerative disorder in the United States, just behind Alzheimer’s. About a million people in the country currently live with the debilitating condition, a number projected to increase to 1.2 million by 2030.

A recently published analysis of Medicare data found that few patients seek needed care. About 40 percent didn’t see a neurologist, suggesting that the health care system might be inadequately prepared to handle their needs.

“By utilizing 2019 Medicare data that represents 90 percent of people living with Parkinson’s in the U.S., this research provides the most timely and comprehensive study of patients with PD (Parkinson’s disease) yet conducted,” study senior author James Beck, who holds a doctorate in neuroscience and is the chief scientific officer for the Parkinson’s Foundation, said in a press statement.

Researchers looked at Medicare data from 2019 to exclude disruptions in care caused by the COVID-19 pandemic.

Critical Shortage of Movement Disorder Specialists

Movement disorders specialists (MDS) are neurologists trained to recognize the disease and other movement illnesses and tailor treatments to each patient. However, this recent analysis found that only 9 percent of Parkinson’s patients receive care from an MDS.

The primary reason for this disparity is the scarcity of MDS neurologists in the United States. On average, there is one MDS per 1,038 Medicare beneficiaries living with Parkinson’s.

“It’s a very highly specialized field,” Dr. Jonathan Rasouli, a neurosurgeon at Staten Island University Hospital, told The Epoch Times. “[It] requires very specialized training after a neurology residency,” he added. Consequently, “there’s just not as many specialized movement disorder neurologists as general neurologists.”

Among the remaining 91 percent of patients, approximately half seek care from general neurologists. However, as much as 40 percent of individuals either have their condition overseen by primary care physicians, who are not experts in PD, or receive no management at all.

As many as 40 states are experiencing shortages of neurologists, and even states that are not may still have areas of limited access, particularly in rural areas, according to the American Academy of Neurology (AAN). Moreover, the AAN predicts that the shortage of neurologists may increase to 19 percent by 2025, up from 11 percent in 2012.

Parkinson’s Patients Often Overlook Depression, Don’t Treat It

Depression and anxiety are frequently overlooked nonmotor symptoms of Parkinson’s disease, yet they can significantly impact a patient’s overall quality of life. These psychological challenges can lead to sleep disturbances, appetite changes, loss of energy, and even worsen the motor symptoms associated with the condition.

Yet only 2 percent of Parkinson’s patients received treatment from mental health professionals, according to the recent analysis, and only 3.9 percent sought psychiatric care.

Mood disorders can precede motor symptoms, and one of the most common is depression, Dr. Rasouli said. Parkinson’s disease can induce changes in the brain that trigger mood disorders (pdf), and the loss of dopamine—the neurotransmitter affected by the condition—can further contribute to depression.

“[It’s] usually found very early in the course of the progression of the disease,” Dr. Rasouli added, noting that it’s a telling symptom when it occurs in someone who is otherwise healthy and “didn’t really have any triggering events for depression.”

One plausible reason for patients not seeking help for depression may be the emotional discomfort and stigma associated with psychological issues.

Stigma surrounding mental illness remains a significant barrier to accessing mental health care, even when adequate resources are available, according to research published in Parkinsonism & Related Disorders.

Many Do Not Receive Therapy to Preserve Function and Independence

Speech-language, physical, and occupational therapy can significantly help people with Parkinson’s maintain their independence as the disease progresses. However, only 20 percent sought physical therapy in 2019, with even fewer people going to occupational or speech-language therapy. 

A 2016 study found that although few people use these available therapies, uptake significantly improved when patients saw a neurologist at least once.

Part of the problem is how the health care system is organized; “It’s difficult,” Rasouli said. Many people face challenges accessing specialized care due to regional or financial limitations. As a result, they often find it difficult to see a neurologist or an MDS and may instead visit their primary care physician or the emergency room. This can lead to delays in receiving proper care and recognition of Parkinson’s symptoms.

Many people face challenges accessing specialized care due to regional or financial limitations. As a result, they often find it difficult to see a neurologist or a movement disorder specialist and may instead visit their primary care physician or the emergency room. This can lead to delays in receiving proper care and recognition of Parkinson’s symptoms. 

Parkinson’s is not a very common diagnosis, Dr. Rasouli said. “And it can be difficult for [patients] to get shuffled or moved to the right place where they actually get the treatments instituted.”

It is essential to increase awareness of early Parkinson’s symptoms among primary care doctors, Dr. Rasouli added. Creating a streamlined service line for patients would enable early recognition and prompt action when these symptoms are identified.

“Because it’s great to identify it, but then you need to do something about it, right?” he noted.