From the Clinic

Gail Miller has a second home at Johns Hopkins’ ALS clinic as an occupational therapist. Trained in OT at the medical school of Washington University in St. Louis, she was in the business almost 30 years before she began seeing ALS patients regularly. Now she’s spent the last six years specializing in that illness, attending to patients in the clinic or at home visits in a job she calls being a path smoother. “We’re all on a journey,” she says. “Some of us just know where we’re going sooner than others, and some of us are able to smooth the path a bit. I see that as my role.”

Miller works on James McComb's joint stiffness.

So you basically help ALS patients manage the daily stuff of life?

Yes. There’s the shorthand that speech therapy’s for talkin’ and physical therapy’s for walkin’ and occupational is for everything else, from getting out of bed in the morning onward. A lot of OT is just what people expect: You help with dressing, eating, grooming. But I do address posture, muscle function and prevention of joint stiffness—a bit of an overlap with physical therapy because we deal so much with things people do with their hands and arms. Patients need to know when to use splints to maximize stability, and I work with the clinic’s orthotist, who does custom fittings, most of which are insurance-billable.

And there are home visits?

I save the home visits for an ergonomic analysis of where patients spend most of their time, where they sit and sleep. Proper posture and positioning help keep them as mobile as possible and also guard against loss of precious energy. ALS patients know about marshaling energy; it’s a big issue. So I raise seat heights, for example, or suggest commode extenders or shower chairs before they think they need them—anything to reduce effort and heighten safety.

You include caregivers?

Of course. I show them how to maintain a good range of arm or leg motion in the person they’re helping, for example. Or I remind them of obvious things that’re easy to overlook in the midst of all their patient-care tasks, simple things such as touch. Friends and family often forget that ALS doesn’t steal sensation. And patients need that input to their vestibular and proprioceptive systems—parts that maintain balance and a normal sense of body. So do shake hands; do rub arms and massage the neck when you can.

How about a tip of the month?

Here’s one. Go to the hardware store and buy a wireless doorbell. It’s inexpensive and an easy, energy-saving way to tell your caregiver you need help, especially if your voice is soft. It also keeps your caregiver from having to hover so much. Just don’t choose a buzzer!

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