From the Clinic

It’s hard to imagine some patients becoming more fit for a time after being diagnosed with ALS, but that doesn’t surprise Brenda Shaeffer, physical therapist with the Johns Hopkins ALS Clinic. A licensed PT and graduate of a respected university-based program, Shaeffer brings the benefits of some 25 years of sports medicine training and practice to more traditional physical therapy for ALS.

Q. Does what you do differ from traditional PT?

A. My approach centers on optimizing performance of remaining “good” muscles. That’s a bit of a shift from usual neurotherapy-oriented PT, where you’re working to re-train the nervous system as you’d do for stroke patients. I look at what you want to do, what you can’t do anymore and then retrain existing muscles to compensate for the loss.

Q. For example?

A. We helped a woman keep walking who’d lost use of the quadriceps muscle in one leg. First, we taught her to adjust her balance by tightening abdominal muscles and locking her knees. Then we trained her to bring her pelvis forward and swing the side of her body around, shoulder first. Basically, you’re choosing a different set of muscles to take over a function. It can look strange, but it certainly keeps people independent longer.

Q. How do you start?

A. You first evaluate a person’s posture, strength and balance. That tells you specifically how to compensate. But you can’t just jump in and get an optimal effect. Using a new group of muscles usually places demands that most people who aren’t fit can’t supply.

Most of us don’t realize that for muscles to gain sufficient strength, the nearby joint must have a complete range of motion. So we work on that. Sometimes, just a focused massage and manipulation can work wonders, can produce a dramatic freeing of the joint. I laugh and say it’s our revival-tent experience! Even then, patients must follow up with daily muscle and joint movement. And if a joint no longer moves then, someone else must manipulate it.

Q. Does that ever cause pain?

A. Not if you do it properly. Pain isn’t part and parcel of ALS. If you do get pain it’s usually because joints are too still. Stilled joints become soft and inflamed. Then tissues swell, resulting both in pain and in an arthritis-like appearance.

Also, if weakened muscles promote poor ways of holding the body—ways that unnaturally stress joints—you can have pain. But you avoid that with posture awareness, keeping full range of motion and muscle retraining.

Q. So you really can get people more fit than before they were diagnosed?

A. Yes. Early in the course of ALS, if patients are diligent, they can increase remaining muscle strength as much as 10 percent.

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