Get to Know the Early Warning Signs of Progressive Supranuclear Palsy—a Disease Doctors Often Mistake for Parkinson’s
PSP, a disease affecting celebrities like Jesse Jackson and Linda Ronstadt, can look similar to Parkinson’s—but here are the symptoms doctors use to tell them apart
Parkinson’s disease is a widely recognized condition, but there’s another disorder with similar early symptoms that your doctor might initially miss. If you’ve noticed your balance shifting unexpectedly or your eyes struggling to move downward, progressive supranuclear palsy (PSP) could be to blame. While it’s rare, it is something to keep an eye out for. Civil rights activist Jesse Jackson, 84, was initially diagnosed with Parkinson’s disease before learning he actually had PSP. Grammy winner Linda Ronstadt, 79, had the same experience.
Since the symptoms of PSP are commonly misdiagnosed, we spoke to an expert to break down what exactly you need to know and why spotting early warning signs sooner supports better long-term care.
What is progressive supranuclear palsy (PSP)?
“Progressive supranuclear palsy is a neurodegenerative disorder that is uncommon and typically affects movement, balance, vision and thinking capacities,” says Zergabachew Asfaw, MD, a geriatrician affiliated with Montefiore Einstein and Burke Rehabilitation Hospital.
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The exact cause of progressive supranuclear palsy is still being studied, but researchers have identified the changes the condition may lead to. “The existing data indicates that the disease is linked to the development of an abnormal form of a protein known as tau and its accumulation in the brain,” says Dr. Asfaw. “This accumulation causes the dysfunction of nerve cells and death of nerve cells in vital brain areas involved in movement and cognition.”
The way these changes take form with PSP helps doctors distinguish it from other neurodegenerative conditions like Alzheimer’s disease. “This distinctive pattern assists clinicians in distinguishing PSP among similar conditions, although the underlying mechanism is under investigation,” says Dr. Asfaw.
Who’s most at risk?
“The disease is common in people above 60 years old, and the average age of the disease onset is in the early to mid-60s,” says Dr. Afsaw. “The most significant risk factor is age, since the disease is not very common among young individuals. No definite indication of great genetic inheritance is present, but there are some genetic variants that are likely to make one a little bit more vulnerable.”
How PSP compares to Parkinson’s
As we revealed above, people with PSP may be diagnosed with Parkinson’s disease at first. Jackson’s family explained in their November 17 statement: “He was diagnosed with Parkinson’s syndrome in 2013. In April, the diagnosis changed to supranuclear palsy (PSP), a neurological disorder.”
Per the Association for Frontotemporal Degeneration, Linda Ronstadt’s PSP was also initially diagnosed as Parkinson’s. The confusion is understandable.
“PSP and Parkinson’s are both movement disorders that are accompanied by stiffness, slow movements and difficulty in balance,” says Dr. Asfaw, and the symptoms typically get worse over time. “They also appeal to the wider category of neurodegenerative Parkinsonian syndromes, which have the same symptoms in terms of loss of motor control.”
However, the conditions cause different physical responses. “One of the main distinctions is the time and the extent of balance issues,” says Dr. Asfaw. “Falls in PSP are early in onset and backward in nature, but in Parkinson’s, later in the disease progression, they occur. PSP also shows typical eye movement impairments, particularly downward gaze impairment, which are not evident in Parkinson’s.”
However, the conditions cause different physical responses. Dr. Asfaw says one of the main differences between Parkinson’s and PSP is how balance problems show up. In PSP, people tend to fall backward early on. In Parkinson’s, backward falls usually appear later as the disease progresses. People with PSP also experience downward-gaze difficulty, which Dr. Asfaw says can look like trouble reading or seeing food on a plate. This type of eye-movement problem does not typically occur in Parkinson’s.
5 common progressive supranuclear palsy symptoms
While the medical field is still working to fully understand the root cause of PSP, the symptoms are clearer. According to Dr. Asfaw, they include:
- Unexplained postural instability or frequent falls (essentially, trouble keeping your balance, which may look like falling backwards for no clear reason)
- Bodily stiffness
- Moving slowly
- Difficulty controlling eye movements (especially moving your eyes up and down)
- Trouble with swallowing and speech (causing choking or slurred speech)
Subtle PSP symptoms you might miss
Some symptoms are less obvious, but still linked to PSP. Dr. Asfaw says these may include:
- Behavior shifts (irritation, impulsiveness and lack of interest in doing activities)
- Vision changes (specifically issues with your downward gaze)
“All these [behavior changes] happen because of the degeneration of the frontal areas of the brain that deal with executive functioning and emotional control,” says Dr. Asfaw. “Such changes may be minor at first, but in most cases, they tend to escalate with time.”
As for vision changes, “The patient may complain of having trouble reading, using stairs or seeing food on his or her plate,” says Dr. Asfaw.
How progressive supranuclear palsy is treated
Dr. Asfaw says there’s no cure for progressive supranuclear palsy, and medications used for Parkinson’s, like levodopa, usually don’t help. Treatment for PSP focuses on managing symptoms with:
- Early neurologist care
- Physical therapy
- Speech therapy
- Support resources and networking with those also managing the disease
Can PSP be prevented?
“Currently, no known lifestyle alterations and preventive factors have been found to decrease the risk of PSP,” says Dr. Asfaw. “PSP is not associated with strong correlations to diet, level of activity or cardiovascular risk factors as compared to some other neurological conditions. Since the condition seems to be caused by complex protein anomalies in the brain, scientists have yet to understand the possible environmental or genetic causes.”
While you can’t prevent PSP, early evaluation for unusual balance or eye-movement issues can lead to a faster diagnosis, earlier planning and better quality of life. By learning about PSP now, you’re giving yourself the gift of awareness—and that awareness is power.
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