Parkinson's or Something Else? Understanding Parkinsonisms

Navigating a diagnosis of Parkinson's or a related condition can feel like stepping into a confusing maze of medical terms, fluctuating symptoms, and evolving answers. A recent panel hosted by the Michael J. Fox Foundation for Parkinson's Research brought together experts and individuals with lived experience to unpack how doctors distinguish Parkinson's from other conditions, how treatment approaches compare, and why clarity matters even when answers are complex. The discussion featured Dr Rachel Dolhun, chief medical adviser at the foundation; Dr Rebecca Williamson, a movement disorder specialist and director of the COPE Center at Penn Medicine; Chris Humphrey, who was diagnosed with Parkinson's in 2015 and progressive supranuclear palsy in 2022; and Harriet Adam, an advocate and former care partner to her late husband Brian, who lived with multiple system atrophy. Understanding parkinsonism as an umbrella concept To understand these conditions, it helps to start with the vocabulary. Doctors use the term parkinsonism not as a single diagnosis, but as an overarching description for a cluster of physical movement signs. These core signs generally fall into three categories: Slowness of movement: This can affect any part of the body, including facial expressions, blinking, moving the arms, or taking steps while walking. Stiffness: Muscle rigidity that a person might feel directly or a doctor might detect during a physical examination. Tremors: Typically a resting tremor, which appears when a hand or leg is completely at rest rather than active or holding a position. Idiopathic Parkinson's is the most common cause of these symptoms, where the exact root cause remains unknown. However, other underlying factors can produce an identical pattern. Drug-induced parkinsonism can occur after long-term use of certain medications, particularly those that block dopamine in the brain, such as specific psychiatric drugs or anti-nausea treatments. Vascular parkinsonism stems from small strokes or localized blood vessel damage caused by high blood pressure, cholesterol, or blood sugar changes over time. Identifying atypical parkinsonisms and red flags Beyond standard Parkinson's lie the atypical parkinsonisms, sometimes referred to as Parkinson-plus syndromes. These neurodegenerative conditions feature core movement symptoms alongside distinct secondary features: Progressive supranuclear palsy: Often marked by early difficulties with balance leading to frequent backward falls, alongside characteristic eye-movement problems, such as slowness or difficulty shifting gaze up, down, or sideways. Multiple system atrophy: Involves movement symptoms paired with significant disruptions to the autonomic nervous system, which controls automatic bodily functions. Common features include sudden blood pressure drops upon standing, severe constipation, temperature regulation difficulties, and urinary issues. Corticobasal degeneration: Frequently presents with muscle overactivation causing abnormal postures in a limb, as well as apraxia, where the brain struggles to carry out automatic voluntary actions like picking up an object. Dementia with Lewy bodies: Marked by early cognitive decline or dementia that emerges within the same year as movement symptoms, often accompanied by visual hallucinations and fluctuating levels of alertness throughout the day. Because these conditions can mimic typical Parkinson's early on, specialists watch for warning signs during the first one to three years. Early and frequent falls, severe autonomic issues, limited symptom improvement from standard medications like carbidopa-levodopa, or unusually rapid progression can prompt a doctor to re-evaluate the primary diagnosis. The role of diagnostic tools and ongoing research Confirming an atypical parkinsonism relies heavily on a thorough clinical examination and a detailed history of how symptoms evolve over time. Supplemental tests provide helpful clues, though none offer a standalone answer: Brain scans: A specialized DAT scan measures dopamine transport activity in the brain. While it helps differentiate parkinsonism from conditions that leave dopamine untouched, such as essential tremor, it cannot separate typical Parkinson's from atypical forms. Magnetic resonance imaging can highlight structural changes or vascular damage but cannot independently confirm a specific syndrome. Biomarker advancements: Recent developments include skin and spinal-fluid tests designed to detect abnormal alpha-synuclein, a key protein linked to Parkinson's, multiple system atrophy, and Lewy body dementia. Research remains active to find similar reliable biological markers for other proteins, such as tau. Autonomic testing: Specialised evaluations, such as tilt-table testing and cardiac monitoring, help assess how well the nervous system controls blood pressure and heart rate, providing vital information when evaluating multiple system atrophy. Adapting care and prioritising quality of life While specific treatments to halt disease progression are still in development, managing daily symptoms remains essential. Multidisciplinary teams, including physical, occupational, and speech therapists, play a central role in helping individuals adapt their routines, maintain balance safely, and stay physically active. Palliative care is another valuable resource that can be introduced at any stage following a diagnosis. Rather than focusing solely on end-of-life needs, palliative care focuses on maximizing overall quality of life, offering support for physical discomfort, emotional well-being, and long-term planning for both the individual and their family. Care partners also serve as a vital part of the support system. Keeping a log of daily events, noting blood pressure changes, and attending medical appointments together ensures that subtle changes are tracked accurately. While receiving an atypical diagnosis presents significant challenges, having clear information helps families adapt, access appropriate support networks, and focus on living as fully as possible.