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When Parkinson’s Symptoms Point to Something Else
Some neurological disorders closely resemble Parkinson’s at first. A neurologist explains the clues that can help patients seek the right care
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Key takeaways
- Roughly 1 in 5 people diagnosed with Parkinson’s may have a different, often more aggressive neurological disorder.
- Early falls, poor response to Parkinson's medication, eye movement problems, severe blood pressure or bladder issues, or an “alien limb” may warrant reevaluation.
- Regular follow-ups, rehabilitation therapies and self-advocacy can support a more accurate diagnosis and better symptom management.
When 71-year-old Mary Ellen Pauli told her primary care physician in January 2024 that she was having trouble walking and her handwriting had become terrible, the doctor assured her that nothing was seriously wrong.
But by August, still without answers and anxious to know if she had Parkinson’s disease like her husband, who had recently died, Pauli called his neurologist.
After a series of tests, she was prescribed carbidopa-levodopa, the medication used to replenish dopamine, a brain chemical essential for normal movement. It was not until March 2026, when Pauli saw a movement disorder specialist, that she learned she doesn’t have Parkinson’s disease after all. She has progressive supranuclear palsy (PSP).
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About 1 in 5 people diagnosed with Parkinson’s disease may have a different and often more aggressive brain disorder that closely resembles Parkinson’s, particularly during the early stages of the disease.
That 20 percent may be an underestimate, according to Dr. Farwa Ali, division chair of the movement disorder section at the Mayo Clinic, who recently evaluated Pauli. “It may take the third, fourth or fifth evaluation with a doctor” to get the right diagnosis, she says.
Three look-alike disorders
At first, the symptoms of these conditions are similar: stiffness, slowed movement and balance difficulties. As a result, physicians frequently default to a Parkinson’s diagnosis until more unusual features emerge.
The umbrella terms for these progressive brain disorders are atypical parkinsonism or Parkinson-plus syndromes. Three disorders that fall under this umbrella are: progressive PSP, which Pauli was ultimately diagnosed with, multiple system atrophy (MSA) and corticobasal syndrome (CBS). Lewy body dementia is also sometimes misdiagnosed as Parkinson’s early in the disease.
Although there is no cure for any of these disorders, there are a variety of ways to help ease patients’ symptoms.
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With no definitive diagnostic test for Parkinson’s disease, doctors rely on patient history and clinical examination. They look for slowness of movement (bradykinesia) plus at least one of the following: tremor in a hand or limb when it is at rest and rigidity or stiffness in the arms or legs.
One clue that a Parkinson’s diagnosis may be off base is that people with atypical parkinsonism often respond poorly to carbidopa-levodopa, whereas people with Parkinson’s disease tend to experience a dramatic improvement once on the medication.
Another sign that may raise suspicions is that Parkinson’s typically involves one side of the body, and then over time, the other side shows symptoms, notes Dr. Janis Miyasaki, professor of neurology and medicine at the University of Alberta in Canada. She is on the board of directors of the Parkinson’s Foundation.
“When symptoms affect both sides and are very symmetric,” or symptoms start on one side but never move to the other, Miyasaki says, “those are signs at the outset that make me wonder: Is this really Parkinson’s?”
Progressive supranuclear palsy
Although diagnosing any of these look-alike conditions is challenging, there are some symptoms that are important to share with your doctor if you experience them.
If someone has balance problems or is falling within the first three years of being diagnosed, this is a big red flag to tell the doctor about, as this is not typical of Parkinson’s, Ali says.
The final straw that triggered Pauli’s call to the neurologist was a terrifying fall. She was standing in a restaurant, holding her baby granddaughter when it happened. “I didn’t lose [balance], I didn’t feel dizzy or woozy.… I just went down,” she says. Pauli continued to fall at odd moments as the months passed. “One time, I fell pretty hard and hit my head on the shower door; another time, I fell in the bathroom and hit the wall,” she recalls.
People with PSP fall without the ability to catch themselves, says Dr. Jori Fleisher, a movement disorder specialist at Rush University in Chicago. “They lose their postural reflexes, so when they fall, they fall hard, they fall fast and they hit their head, or they fall backward or may keep plopping backward into the chair,” she adds.
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“Picture a two-by-four of wood,” Fleisher says. “They just tip back without that instinct to put a foot behind them or take those steps to try to catch themselves.”
Because some people with PSP have eye movement problems, Miyasaki adds, they often can’t look down to see where they are walking and have bad balance. “So of course, these patients tend to fall very early on. They also complain that [they] can’t read books. It’s because they cannot track from the end of the line to the beginning of the next line, and they’re always losing their place,” she explains.
Multiple system atrophy
Falls can also occur in the other atypical parkinsonisms. People with MSA, for example, may pass out after standing up.
“They have really marked changes in blood pressure and blood pressure control. When they lie down, their blood pressure is high and when they stand up it’s low,” Miyasaki says.
Voice changes are another sign. The voice may become strangled with abnormal breathing patterns that cause a sharp, high-pitched breathing sound known as stridor. A person with MSA may also have such bad bladder problems that they require a urinary catheter, she says.
Corticobasal syndrome
John Scornavacco, 86, a lifelong athlete who picked up golf in his mid-70s, began experiencing balance problems during his swing follow-through about three years ago. “All of a sudden, I didn’t feel steady walking,” he recalls. “I ended up holding a tree.”
“Eventually, I couldn’t catch a beach ball, and that was so strange to me,” says Scornavacco, a former college football player and high school coach. His symptoms sent him to the ALS clinic at Rush, because he feared he had Lou Gehrig’s disease. When that was ruled out, he was referred to Fleisher and received a diagnosis of corticobasal syndrome, which is a clinical description of symptoms seen in a person who has corticobasal degeneration (CBD).
Corticobasal degeneration causes a combination of movement problems, thinking and sensation difficulties. One side may be slow and stiff and the other looks weakened, like the person might have had a stroke, Miyasaki says.
“It almost looked like a stroke,” recalls Scornavacco, adding that at times, his doctors noticed that his left hand had a mind of its own. “When doctors asked me, ‘Have you noticed your left hand is kind of like sticking out away from your body?’ I said, ‘No, I’m not aware of this.’ ”
This sign is called alien limb phenomenon, and it is characteristic of CBS. “The hand is searching for where it is in space, because the information isn’t coming through correctly,” Miyasaki says.
Patients will refer to their arm and give it a name, she says, or say that it behaves as if it’s completely separate from them, throwing food from the table at a restaurant or nudging someone on the subway, for example. People don’t typically disclose this strange symptom to their doctors, but when they learn it’s part of the neurological disease, they are often relieved, Miyasaki says.
What to do if you suspect your diagnosis of Parkinson’s is wrong
- Report unusual or embarrassing symptoms promptly. People with PSP may exhibit heightened or inappropriate emotions, called pseudobulbar affect. “The person may laugh at times when it’s not appropriate,” Miyasaki says. A patient may tell her that they went to a funeral where they felt very sad but couldn’t help laughing, for example.
Bladder or bowel changes or sexual dysfunction are particularly common in atypical parkinsonisms, especially MSA, and people are often not comfortable bringing up the issue, Fleisher says. In PSP, the eyelids may slowly drift shut, even when the person is not going to sleep, a condition called eyelid apraxia.
- Get regular follow-up visits. The diagnosis of parkinsonian syndromes is not static — it evolves over time as new features emerge. Regular follow-ups and reassessments with your physician are critical, not only to reconfirm the diagnosis over time but also because the progression of symptoms in atypical parkinsonian syndromes is often rapid.
“What happens for many people is they become more mobility challenged, [so] it’s difficult for the families to get them to an appointment,” Miyasaki says. “They just have to say, ‘Something’s not right,’ and we will support them by providing a teleconsult,” she says.
- Ask for treatments to help with symptoms. Regardless of the specific diagnosis, physical therapy, occupational therapy, speech therapy and psychosocial support may help. There is a misconception that because we don’t have a cure, there’s nothing we can do, says Fleisher, who explains that those therapies can offer an improved quality of life that lets people thrive with their condition.
Scornavacco credits his physical therapist with helping him feel he can do more than he could three years ago. Pauli is a firm believer in exercise: She does yoga four times a week, goes on the elliptical or the treadmill daily, adds fitness classes in when she can and golfs when the weather allows.
- Advocate for yourself. “You really [have to] be a fierce fighter for yourself and ask as many questions as possible and not be afraid to pick up the phone and call anybody,” says Pauli, who did just that in the hopes of getting into a new clinical trial for PSP.
- Find a support group. “Participation in support groups is very important,” Miyasaki says. “You look around and you say, ‘Oh, yes, they are talking about things I’m experiencing.’ ” Pauli found the CurePSP.org website so informative that she decided to attend its second annual Spring Community Weekend in Los Angeles last May, where she learned from others with PSP. “You’ve got to do your homework and read, and you have to talk to a lot of people,” she says.
CurePSP also offers online support groups as well as a regional list of peer supporters for people with PSP, MSA and CBD.
The key takeaways were created with the assistance of generative AI. An AARP editor reviewed and refined the content for accuracy.
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