Progressive Supranuclear Palsy

Not all movement disorders are Parkinson’s disease

Progressive supranuclear palsy (PSP) is an uncommon neurodegenerative disorder. It’s commonly misdiagnosed as Parkinson’s disease.

However, PSP is different from Parkinson’s in several key ways:

  • PSP causes frequent falling early on.
  • PSP causes more neck stiffness than Parkinson’s.
  • PSP does not cause tremors.
  • People with PSP maintain their sense of smell.
  • PSP does not respond strongly to the drug Levodopa as Parkinson’s does.

Other common symptoms of PSP include sensitivity to bright light, slow or slurred speech, insomnia, depression, difficulty completing tasks, and difficulty problem solving and planning.

PSP affects roughly 5 in 100,000 adults. It is much less common than Parkinson’s disease which affects roughly 150 in 100,000 adults. PSP is considered a “Parkinsonian” syndrome, however, the disease process in the brain is very different from Parkinson’s disease. Parkinsonian refers to the movement symptoms of tremor, slowness, muscle stiffness, and impaired speech.

PSP was described in 1964 by Steele, Richardson, and Olszewski.  It is named after the finding of loss of normal eye movements. However, eye movement abnormalities do not usually occur until three or four years after disease onset. PSP is very unlikely to run in families, instead, it affects individuals through chance mutations.   

PSP is diagnosed by history and physical exam, not by blood tests and imaging. There is no treatment or cure for PSP and it progresses more quickly than Parkinson’s disease. Treatment is focused on maintenance of function, preservation of independence, and prevention of choking, bedsores, and other complications.

Practical tips:

  1. If you have been diagnosed with Parkinson’s or another neurodegenerative disorder but you are not progressing as expected or something does not fit, see a neurologist that specializes in neurodegenerative disease to obtain an accurate diagnosis.
  2. Engage a team of physical, occupational, and speech therapists to maintain independence for as long as possible, and prevent complications such as choking and falls.
  3. Plan ahead for financial and social needs so that you and your family are as prepared as possible as the disease progresses.
  4. Make decisions about care preferences early on, before a crisis occurs. 

Things you can do:

Participate in research

https://www.clinicaltrials.gov/ct2/results?cond=Progressive+Supranuclear+Palsy&term=&cntry=&state=&city=&dist=

Get involved, get support, support others

https://www.psp.org/

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