From the Clinic

Lora Clawson, M.S.N., C.R.N.P.

Lora Clawson, M.S.N., C.R.N.P., manages Johns Hopkins’ ALS clinic. She also oversees its clinical trials.

It’s been a half-year since my ALS diagnosis and, while I generally know the disease’s course, it’d be helpful to learn more exactly what comes when. Nobody discusses that with me.
Because ALS is unpredictable, every patient progresses differently. And though the disease advances in a set way within cells, what happens to the whole body varies from person to person, both in the order and timing of what body part’s affected. In our clinic, for example, we have the sense that weakness starting, say, in the right leg, next moves to an adjacent limb—the right arm or left leg. But we can’t predict which.

At times, some patients report that the disease seems to speed up. But studies show that the rate of motor neuron death within a muscle remains constant.

Mostly, times that patients tell us their ALS has quickened follow a major lifestyle change—in feeding themselves, for example, or in needing breathing help. We believe heightened awareness of the disease makes it seem to progress faster.

True, some people are “rapid progressors” throughout, while others are slow and stay that way. After three or four consecutive monthly visits, we get a feel for a patient’s rate. Then we help plan an approach as the disease progresses.

If ALS undeniably progresses, why should I keep up my clinic visits?
When patients feel well, they often don’t want to see other patients. Being constantly reminded of ALS is stressful. Others find it difficult to travel, or family members can’t get off work. Many valid reasons exist for not coming to a comprehensive clinic.

But there’s a down side to letting visits lapse. Regular appointments let us help patients deal with where they are in the course of the disease—they help optimize the good and handle the bad. Visits let us stay ahead of problems and avoid surprises. They permit interventions that may stave off the next stage a little longer. If a patient is losing weight, for example, we can advise specific changes in preparing meals or in calorie content that can delay the need for a gastrostomy tube.

Also important: Scheduled visits tell us how patients and their families are coping. Patients who have difficulty, say, in changing the way they brush their teeth, who resist alternate ways to accomplish tasks, may shorten survival. We know mourning losses gets in the way. But research on ALS and other illnesses such as cardiac disease shows that flexibility and a positive attitude make a difference.

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