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, including its clinical trials. In this column she answers typical patients’ questions.

Is depression a symptom of ALS? I mean, is it part of the disease?
No one has shown that depression is a result of ALS’s activity in the nervous system. It’s not like Parkinson’s disease, where mood change can be disease-related. Patients are understandably depressed following diagnosis or after progression of the disease requires a lifestyle-altering step, such as getting a PEG tube or using a wheelchair. But in ALS, there’s not as much depression throughout the course of the disease as some would think.

Not to state the obvious, but patients deal so much better with ALS if they’re not depressed. If symptoms of depression continue—change in sleep patterns, loss of appetite, preoccupation with death issues, loss of concentration or sexual desire, mood swings—we typically prescribe antidepressants. We also emphasize the importance of counseling to deal with the effects of ALS on patients and families.

It takes about six weeks for the drugs to become therapeutic, so we’re in touch with patients weekly during that period, alert for side effects and watching how things are going in general. Fortunately, several of the drugs have added benefit in enhancing sleep and/or decreasing the excess saliva that often occurs in the disease.

What if I still have trouble sleeping?
Sleep may be disturbed for reasons other than depression. Low oxygen levels, difficulty moving or turning in bed or poor sleep hygiene all contribute. The latter is often overlooked, especially in people newly sedentary: too much caffeine, a too-heavy meal, emotional upset before bed, an overstimulating video.

Then what should I do?
Don’t suffer in silence. Talk with your clinic practitioner to get a proper evaluation and appropriate help. Sometimes a small tactic can make a major difference.

If a patient isn’t sleeping, chances are the caregiver isn’t sleeping either, or, at least, is losing essential REM sleep. That contributes to short temper, partner burnout and inability to provide necessary support. So it’s important for caregivers to schedule regular weekly breaks early in the disease—four to eight hours of private time.

Establishing the break early on, so it’s routine, lessens the emotional dependency that can come later in the illness when patients rely completely on caregivers. It can lessen anxiety and feelings of being burdensome that patients may develop. Also, it makes it less likely for caregivers to feel they’re abandoning their loved one if they take time out. Finally, such breaks give patients a chance to see other friends and family members.

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