Progressive Supranuclear Palsy (PSP)
Progressive supranuclear palsy (PSP) is an adult-onset, neurological disease that impacts movement, thinking, speech and vision. PSP is commonly referred to as an “atypical parkinsonism” because of its overlap of certain symptoms with Parkinson’s disease. However, it often progresses quite differently than Parkinson’s disease, and it shares similar pathology to Alzheimer’s and frontotemporal dementia. DOWNLOAD PSP BROCHURE: SOME ANSWERS (PDF)
Nicole with friend Katie and Nicole's Mom Rosemarie (February 2025)
Quick Facts:
- Progressive supranuclear palsy (PSP) is a rare neurodegenerative disorder that has no known cause or cure.
- It affects brain cells that control balance and coordination, eye movement, speech, swallowing and thinking.
- On average, symptoms begin in the early 60’s, but may start as early as in the 40’s.
- PSP is slightly more common in men than women, but it has no known geographical, occupational, or racial preference.
Some Symptoms of PSP:
- Loss of balance
- Changes in personality
- Weakness of eye movements, especially in the downward direction
- Weakened movements of the mouth, tongue, and throat
- Slurred speech
- Difficulty swallowing
Prevalence
PSP is considered rare, affecting 6-10 individuals per 100,000, with about 30,000 cases in the United States. These numbers are likely underestimates due to frequent misdiagnosis of Parkinson’s disease or frontotemporal dementia.
In comparison, about 1 million people in the U.S. have Parkinson’s disease, and about 7 million have Alzheimer’s disease. PSP is slightly more common than ALS (Lou Gehrig’s disease), but ALS is more widely known, easier to diagnose and often affects younger people.
PSP and Parkinson's Disease:
PSP is sometimes called an “atypical parkinsonism” because of its overlap with some Parkinson’s disease symptoms. However, PSP and Parkinson's have their own unique set of symptoms and disease progression because they have different underlying causes. PSP symptoms are more similar to those associated with Alzheimer's disease and frontotemporal dementia
Parkinson's and PSP both tend to cause issues balance, stiffness, slowness and clumsiness. But even within these similar symptoms, they tend to differ. For instance, while tremor is a characteristic symptom for people with Parkinson's disease, people with PSP do not tend to experience tremor. In addition, when experiencing a fall, people with PSP tend to fall backwards, while people with Parkinson's tend to fall forwards.
PSP also progresses more quickly than Parkinson's disease. More than 50% of people with PSP are initially misdiagnosed with Parkinson’s disease. Healthcare professionals usually begin to rethink the diagnosis when symptoms progress faster than expected or when typical Parkinson’s medications aren’t working.
Receiving a PSP diagnosis can be challenging and frustrating. Even for those not initially misdiagnosed, the process can be lengthy because many healthcare providers are unfamiliar with the disease. As a result, it can take a long time for people to receive an accurate diagnosis.
(Information above from CurePSP)
Meet the Faces & Voices of those with PSP/CBD/MSA/DLB
Click Here to hear stories of patients and caregivers living through these diseases as seen on www.pspawareness.com...
Other Notable Cases:
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Jennifer Wexton
Former VA Congresswoman with PSP...
She has described PSP as "Parkinson's on steroids".
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Annual 'Teeing Off for Katie' Fundraiser Event
A CurePSP Charity Golf Tournament in Raleigh, NC
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1st Annual 9/19/25 Event: Raised over $72,000
2nd Annual 9/18/26 Event: TBA but $50,000+ so far
3rd Annual TBA 2027
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WAYS TO DONATE AND HELP
Option 1: Sponsor the Team!
Support Nicole's 2027 team next September by pledging $5/10/15/20 per birdie (or lower like an eagle or hole-in-one :)... whatever you'd like to donate per birdie or lower made during their round (scramble format). Nicole will be personally teeing it up with her team again in Raleigh to support the cause and help with research towards this brutal, terminal disease that affects so many around the world as patients and caregivers alike, including her Mom (Rosemarie) who lost her battle to PSP in September 2025.
Her goal now is to support her friend Katie Lyons and others living the PSP experience. Just let Nicole know your pledge amount (nicolewellergolf@gmail.com) and she'll touch base upon the conclusion of the event with results, your final amount based on how the team played and how to get the funds to the Teeing off for Katie event that will be tax-deductible straight through CurePSP. Contact Nicole directly at nicolewellergolf@gmail.com.
2025 - Nicole's scramble team made 13 birdies and lower
2026 - Nicole's scramble team made 13 birdies and an eagle
Option 2: Donate one-time easily through this CurePSP link between events
Resource Sites:
CurePSP 
PSP Awareness 
