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PTs who have never treated a patient with progressive supranuclear palsy are not alone. The disease is so rare that only now are clinical studies emerging that prove the benefit of physical therapy intervention for the population. Whereas more than half a million Americans are diagnosed with Parkinson disease, PSP is much less common, affecting 20,000 people nationwide.

PSP is a Parkinson-like condition that affects walking, balance, mobility, vision, speech, and swallowing. Affected individuals first notice balance difficulties that can cause spontaneous dizziness and sudden falls, and often experience problems with their vision, especially an inability to look downward.

“We don’t know why that happens,” says Cris Zampieri, PT, PhD, a postdoctoral fellow at the Neurological Science Institute at Oregon Health and Science University in Portland. “There is an area in the brain stem that controls eye movement, and when those neurons degenerate, it affects vision. But no one knows if it’s environmental, familial, or genetic.”

PSP is caused by a slowly progressive degeneration of brainstem nuclei with a typical onset in late middle age. Although PSP is not directly life-threatening, individuals with PSP are more susceptible to head injuries and fractures from unexpected falls, and pneumonia from impaired swallowing.

A Visionary Study

Because little research had been done on the subject, Zampieri and her colleague and mentor Richard Di Fabio, PT, PhD, developed a small clinical study that combined treatment for both eye movement and balance problems in people with PSP. Nineteen moderate-stage patients took part in the survey, with roughly half in a balance-only group and the other half given exercises for both balance and eye movement deficits. “The exercises included going from sitting to standing, walking in tandem, abduction exercises, and so on, along with eye movement exercises,” Zampieri notes.

Because there were no guidelines in the literature for developing such a program, the team had to be creative in constructing the study. “We pulled together information from other populations and studies as to what they had found effective to develop our protocol,” Zampieri says. “No one had integrated eye movement with gait and posture studies, yet it’s a normal neuromechanism that we all need in order to function.”

Moderate to large improvements in gait and eye movement was seen in the dual-
therapy group, with only small benefits for the balance-only cohort, she reports: “It was a preliminary study that involved just a small group of subjects, but I think the main message is that when you associate eye movement training with balance training, you get more benefits than with balance training alone.” A larger study involving more subjects is in the planning stages.

Benefits in the Balance

At the University of Texas Medical Branch School of Health Professions in Galveston, Elizabeth J. Protas, PT, PhD, FACSM, created her own pilot study of PSP and balance problems. Protas, professor and chair of the department of physical therapy, was impressed with the Zampieri-Di Fabio trial due to its scope. “I really must compliment them, because getting 19 [patients with] PSP together is almost a miracle,” she says.

Protas became interested in studying balance when a nursing home resident with PSP came to her program after experiencing frequent falls. “His wife wanted to keep him safe, but I failed; I couldn’t help this guy, even though I tried everything I could think of to make him more stable. I found that walkers aren’t the answer for these people, because even while using one they fall over sideways or backward.”

Protas’ study concentrated on exercises to prevent falls, a symptom that, unlike PD, manifests itself early in the course of the disease. There are other differences as well, Protas says. “[With] PSP, [a] patient’s walk is entirely different than with Parkinson’s,” she explains. “They exhibit something called a cavalier gait: almost a kind of swagger, usually followed by a fall. Someone with Parkinson’s walks with very small steps, is very slow, and doesn’t have a lot of trunk and arm movement, whereas the person with PSP has an arm swing and a regular walking stride, but no postural responses.”

For the study, Protas’ nursing home resident was given 1 1/2 hours of exercise three days per week for eight weeks, using walk training, balance perturbation, and step training on a treadmill while strapped into a body support harness for safety reasons. “It took us about three to four weeks before we saw noticeable improvement,” Protas says. “When I saw the data, I could hardly believe it, because I had come to the point where I didn’t think we’d ever be able to help. I never would have predicted we could have helped him and made that much change. It was one of those wonderful moments in clinical science.”

Ongoing Gains

At Concordia University in Mequon, Wis., professor of physical therapy Teresa Steffen, PT, PhD, had a patient with PSP of her own who suffered from frequent falls. After reading Protas’ paper, she set up a treadmill training regimen for the patient, a 72-year-old former dentist who was six years post-diagnosis. The sessions lasted for 2 1/2 years, and during that time he also participated in an exercise group for patients with PD.

The outcome was a success, Steffen reports. The patient’s incidence of falls has decreased markedly, and today he is still ambulating with the aid of a walker, lives at home with his wife, and is very involved in his community. Now 75, he has continued his exercise regimen twice per week since the study ended.

Steffen stresses the importance of a long-term, ongoing exercise program for patients with PSP. “It’s not something you can do for a while and quit and be better,” she says. “It’s forever or forget it. To get this motor learning, patients really have to practice.”

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Mark Cantrell is a medical writer for the Gannett Healthcare Group. To comment, e-mail pteditor@gannetthg.com.

© Copyright 2009 Gannett Healthcare Group