Parkinson’s or Parkinsonism?

Last week’s Movers & Shakers podcast tackled a subject that rarely gets enough airtime: what happens when it looks like Parkinson’s but isn’t. Listeners met Lisa Rodriguez, who lives with corticobasal degeneration (CBD), and Karl Perkins, diagnosed with Lewy body dementia. Both conditions sit under the umbrella of “parkinsonism” – a set of symptoms that mimic Parkinson’s but come from different causes, respond differently to treatment, and often carry a tougher prognosis. Rebecca Packwood from the PSP Association put it bluntly: “These are rare, life-limiting neurological conditions. They’re often mistaken for Parkinson’s. In fact, 60% of people with these conditions are misdiagnosed, and 40% of those are told they have Parkinson’s.” Why does this matter for people already living with Parkinson’s? Because misdiagnosis is not just a statistic. Studies show that about one in five people given a PD diagnosis in life turn out not to have it at post-mortem. Patient surveys echo this: around a quarter of people report they were misdiagnosed at the start. The risk is highest in the early years, when the symptoms of different parkinsonian conditions overlap. Time often clarifies the picture, but until then, the label can shift. The differences are not academic. In Parkinson’s, levodopa remains the gold standard treatment and usually provides sustained benefit. In atypical parkinsonisms, the same medication may do little or nothing. PSP brings early backward falls and eye movement problems. CBD causes limb clumsiness, dystonia and swallowing difficulties, as Lisa described so vividly on the podcast. Lewy body dementia, Karl explained, shares the rogue protein behind Parkinson’s but when it strikes the thinking part of the brain first, memory, concentration and even perception take the early hit. Multiple system atrophy (MSA) comes with severe blood pressure drops and bladder problems. All of these conditions progress faster than typical PD and need different support strategies. Misdiagnosis matters for day-to-day management. People with MSA, for example, need early blood pressure and sleep support. Those with PSP need help with balance and swallowing. In CBD, botulinum toxin for limb dystonia may be more useful than extra medication. And in Lewy body dementia, sensitivity to certain Parkinson’s drugs can cause hallucinations or confusion. For families, knowing the right label also helps plan ahead: life expectancy is often shorter in PSP, CBD or Lewy body dementia than in PD, and the challenges that arise are different. Tests can help but they are not perfect. A DaTscan, which shows dopamine loss in the brain, can confirm parkinsonism but cannot separate PD from PSP or MSA. Heart scans (MIBG) and smell tests sometimes help draw the line, but the most powerful tools are still careful history, examination, and watching how the illness unfolds over time. Listening to Lisa and Karl on Movers & Shakers, what shines through is not just the hard science but their remarkable resilience. Lisa jokes about her purple hair, her beloved electric wheelchair “Winston” and her mischievous approach to life. Karl is more reserved, reflecting on faith, family and the choice to focus on living well. Both are reminders that while these conditions can be harsher than Parkinson’s, life with them can still be rich with laughter, holidays, purpose and connection. So here’s the takeaway for the Parkinson’s community: if your journey looks and feels like classic PD and medicines help in a predictable way, you are likely on the right track. But if symptoms progress rapidly, falls come early, blood pressure collapses, or medications do little, it is worth asking your team to revisit the diagnosis. The science supports it, the statistics confirm it, and as Lisa and Karl show, getting the name right matters – not just for treatment, but for understanding what lies ahead and how best to live with it.