We recognize this information is scary and overwhelming to learn and to think about. It can be helpful to talk this information through with your medical team and your family, including planning for the future and your wishes for quality of life. CurePSP and the rest of your support system are here to help.
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Are there different types of PSP? PSP is occasionally referred to as Steele-Richardson-Olszewski syndrome after the three physicians who first described the disease in 1963. There are thought to be several different types of PSP.
About half of those with PSP have the Richardson’ s syndrome type. The most common first symptom of this type of PSP is loss of balance while walking, which can take the form of unexplained falls. People may also experience stiffness or awkwardness when walking, while sometimes the falls are described as attacks of dizziness.
The second most common form of PSP, accounting for about a quarter of cases, is called PSP-parkinsonism. The PSP-parkinsonism type of PSP is more likely to have mild tremor as a symptom, to involve one side of the body more than the other, to have less of a problem with vision and swallowing, and to respond better to drugs for Parkinson’ s disease.
There are other less common types that are characterized by their predominant clinical symptoms.
Some neurologists may share the diagnosis of a specific PSP type with you, but they likely will not. The different types may involve symptoms that require certain care considerations, but ultimately, PSP, regardless of the type, is treated similarly. Care, support, and management will be tailored to your unique needs.
How is PSP diagnosed? To diagnose PSP, a neurologist will gather a person’ s medical history, including neurological symptoms, when they started, and how they impact the person’ s everyday functioning. They will also perform a physical examination where they will evaluate how a person walks, speaks, and moves their eyes, feet, and hands.
At this time, there is no specific test to diagnose PSP. Neurologists will often refer to magnetic resonance imaging( MRI) to look for changes in the brain. Midbrain atrophy found on a brain MRI can be suggestive of PSP and when viewed from a certain angle, this atrophy can resemble a hummingbird. The“ hummingbird sign” on a MRI( sometimes called the“ penguin sign”) can help to support a clinical diagnosis of PSP. A neurologist may decide to use other tests, such as blood tests, a neuropsychological evaluation, a DaTscan, or positron emission tomog raphy( PET) scan to support the diagnosis of PSP or help rule out other causes of symptoms. Sometimes how someone responds to medications for Parkinson’ s disease can also help a neurologist make a diagnosis of PSP.
Many people with PSP face a long and confusing diagnosis journey, including a number of tests, specialists, and diagnoses. It is our hope that better awareness of PSP, especially within the medical community, will lead to earlier and more accurate diagnosis.