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OHSU among 25 centers treating debilitating movement disorder

New consensus statement highlights value of early diagnosis and treatment for deadly neurodegenerative disease
Marian Dale, M.D., M.C.R., a brunette woman in a medical face mask works with a senior male patient wearing straps across his chest, over his shoulders, and around his waist in a clinic setting.
Marian Dale, M.D., director of the PSPCure Center of Care at OHSU, works with patient Arnie Hoag of Vancouver, Washington, on Friday, June 25. A statement of consensus published Wednesday outlines best practices for timely diagnosis and treatment of progressive supranuclear palsy, or PSP. (OHSU/Erik Robinson)

Oregon Health & Science University is among 25 specialized centers around North America to treat a rapidly degenerative form of parkinsonism that may be more common than generally understood.

Known as PSP, or progressive supranuclear palsy, the disorder is estimated to effect six in 100,000 people. The condition leads to death in an average of seven years from its onset.

In an effort to improve diagnosis and treatment, a trio of OHSU clinicians and researchers joined with other experts across the U.S. and Canada in co-authoring a consensus of best practices around the disorder. The paper published today in the journal Frontiers in Neurology.

Portrait of Marian Dale, M.D., M.C.R., a smiling brunette woman wearing a white lab coat with her name and the OHSU logo embroidered on the right and left chest respectively.
Marian Dale, M.D., M.C.R.

Clinicians hope the new consensus document will raise awareness of PSP and a related disorder called corticobasal syndrome especially among primary care physicians, geriatricians and general neurologists, said co-author Marian Dale, M.D., M.C.R., assistant professor of neurology in the OHSU School of Medicine and director of OHSU’s CurePSP Center of Care.

Dale said she believes the disorder may be far more common than currently realized.

“We think it’s underdiagnosed,” she said. “The symptoms of PSP get confused with Parkinson’s disease, but the pathology is actually closer to Alzheimer’s disease.”

The disease primarily affects adults in their early 60s and older and is considered a “prime of life” disease. PSP is characterized by imbalance and early falls, difficulty coordinating eye movements, and speech and swallowing impediments.

Medications traditionally used to treat Parkinson’s aren’t generally as effective in PSP.

With early diagnosis, Dale said it’s possible to extend longevity and reduce symptoms through targeted approaches such as speech therapy, physical therapy and occupational therapy. OHSU, which established the only CurePSP Center of Care in Oregon or Washington in 2019, coordinates patient care through a multidisciplinary team.

The consensus paper highlights the value of accurate diagnosis and early intervention.

“It does extend patients’ longevity to be on the right regimen of therapies early on,” Dale said. “Many patients take a long time to get a diagnosis. An astute physical therapist or ophthalmologist might pick it up, but it gets missed a lot.”

Dale’s co-authors from OHSU include physical therapist Jenny Wilhelm, P.T., D.P.T., N.C.S., and Martina Mancini, Ph.D., assistant professor of neurology in the OHSU School of Medicine.

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