Terry Ellis received a five-year, $3 million grant from the National Institutes of Health for an exercise program with an mHealth component. Photo by Jake Belcher
Each year, doctors diagnose about 60,000 Americans with Parkinson’s disease, a progressive neurodegenerative disorder that can lead to tremors, limb and facial rigidity, and balance and walking problems. There are treatments, but no cure.
One of the best therapies turns out to be one with no cost and few side effects, says Terry Ellis, an assistant professor of physical therapy and athletic training and the director of Sargent’s Center for Neurorehabilitation. That treatment, says Ellis, is exercise.
Ellis, who directs the American Parkinson Disease Association National Rehabilitation Resource Center at Boston University, has been working with patients and studying the neurology of Parkinson’s for 20 years. Widely recognized as a national leader on the subject, Ellis has received many teaching and research accolades, including the 2016 Chattanooga Research Award. Presented by the American Physical Therapy Association, the award recognizes the most significant research paper contributing to the science and practice of physical therapy that year.
Ellis has also pioneered work on using mobile health (mHealth) technology like iPads to help people with Parkinson’s keep moving. With Gammon Earhart, a professor at Washington University in Saint Louis, she recently received a five-year, $3 million grant from the National Institutes of Health to enroll 200 people with Parkinson’s in a one-year exercise program with an mHealth component to study how well it works and why.
We spoke with Ellis about how Parkinson’s treatment has changed through the years, and her outlook for the future.
Inside Sargent: When you were first working as a clinician, 30 years ago, how did you treat people with Parkinson’s? What was the standard practice?
Terry Ellis: Back then, we thought, “Oh, these people have a chronic progressive disease; they’re just going to get worse.” We didn’t really expect them to improve, so we just taught them strategies to get by. Like, “If you can’t stand up out of a chair by yourself, here’s how someone might help you.”
And what was the understanding of the effect of exercise on Parkinson’s?
At that time, there were almost no studies looking at the benefits of physical therapy or exercise for people with Parkinson’s. It wasn’t until the 1990s that there were some animal studies done in rats and mice with Parkinson’s. And scientists found a potential neuroprotective effect, meaning that maybe exercise does something to slow down the progression of the disease or to protect cells from dying.
What do we know about exercise and Parkinson’s now?
Studies conducted here at Sargent as well as by other research groups looking at the benefits of physical therapy and exercise for people with Parkinson’s have shown improvements in things like walking and balance. Most of those early studies were short-term; you could make a difference over 8 to 12 weeks. What about longer? People with Parkinson’s live a long life and want to live well.
In the last five years or so, more long-term studies have come out looking at what happens if you exercise consistently for a year or two. The results show that people with Parkinson’s who exercise do better than people who don’t.
Why? What’s happening?
We know that exercise improves overall brain health. But in Parkinson’s, there may be an increase in neurotrophic factors that protect sick cells from dying. We don’t know for sure. We see improvements at the functional level. We see that people can walk better for a longer period of time. We see that balance can improve. We see that strength can improve. So now exercise is becoming part of the standard recommendations for treatment for people with Parkinson’s.
“We promote people coming directly to physical therapy at the point of diagnosis [so that we can] prescribe an exercise program that’s tailored to their needs.” –Terry Ellis
Are there issues with exercise that are particular to people with Parkinson’s?
Yes. First of all, they have mobility problems, so they can fall, they have a shuffling gait, they’re slow. These can make it difficult to exercise. But I think, more important, there are issues related to depression and apathy, and they may have poor confidence in their ability to exercise successfully. These factors make it even more difficult to overcome that inertia. Also, the number of people in the United States with Parkinson’s who are referred to physical therapy is around 14 percent. That’s terrible. In my mind, it should happen for everybody right away.
Do other countries do it better?
Yes, because other countries with socialized medicine aren’t dealing with third-party payers. If you have Parkinson’s in the Netherlands, you can just go to a physical therapist and get treatment.
We promote people coming directly to physical therapy at the point of diagnosis. Then we can do a battery of tests to get a baseline assessment—what’s your initial walking ability, your balance, your quality of life—so that we have solid data. And then we prescribe an exercise program that’s tailored to their needs.
Are there certain types of exercise that seem especially beneficial for people with Parkinson’s?
It seems that there may be a neuroprotective effect from aerobic exercise. There are also studies showing that progressive resistance exercises or strengthening exercises help people with Parkinson’s who have bradykinesia, or slowness of movement, to turn on their muscles faster so that they can move more efficiently. Balance exercises are also very important because of the fall risk.
I was wondering whether they should avoid exercises requiring balance.
Well, at one time, that was the recommendation. But if you sit too much, you’re going to be so deconditioned, that creates a whole other cadre of problems. And so we recommend people move, and move a lot.
How does mHealth fit into that?
When we see people every six months, they still have to exercise independently between visits. So what we’ve been doing is using a mobile health platform, an app. People have their device—either their iPad, tablet, or their smartphone—and we use an app that shows videos of their exercises. So they get home, open the app, and then they can see the exercises that we’ve prescribed for them and remember how to do them. After they finish the exercise each day, they answer certain questions, like, Was this hard or easy? How many did you do?
Then the therapist can check the data. And based on the responses, we can remotely adapt the exercise program so we can keep it interesting. One of the big things that patients report to us is that accountability makes a difference. They know that you’re watching, and they know they’re coming back in six months to be remeasured, and they want those numbers to improve. They want to take control of this disease.
Where do you hope treatment will be 20 years from now?
Well, maybe we’ll have a cure. But I think what might happen is that there will be a “buffet” of treatments that slow the progression of the disease. And one of those will be exercise. And I hope that we have a system in place across the United States so that everybody gets this, not just people in the know.
This interview has been condensed and edited for clarity.