Ask the Doc: Q & A with Edward Kasarskis, MD, PhDEdward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.
Restless Nights, No Clear Reason Q: My mother was diagnosed with ALS about five months ago. She had been very healthy, and then the first sign that she developed was slurred speech. Now she is unable to speak or walk, and while she is still able to feed herself, she’s starting to have a hard time with that. But she’s also having a lot of trouble sleeping, and she moans or cries about every hour throughout the night and needs my dad to put her into her wheelchair and take her to the bathroom. Most of the time it turns out she didn’t need to go. The doctor has put her on sleeping medication, but it’s not working all that well. What should we do? A: I’m very sorry to hear about your mother. Without hearing more, it’s hard for me to know for certain what to recommend, but I think it may helpful to you and hopefully for other readers if I give it a try. There are a few things to consider. First, it’s possible that something other than ALS is causing your mother’s night time discomfort and making her want to go to the bathroom so often. She may have a urinary tract infection, which typically causes someone to want to urinate frequently, often with a sense of urgency. One option would be to ask your physician to test her urine to see if she has an infection. You mother also might have what is called an “overactive bladder,” something that can be caused by muscle spasms. If this is what she is dealing with, her physician could prescribe a medication, called an “anti-cholinergic,” which could reduce bladder spasms and might incidentally also help her deal with any excess saliva, a common problem among people with ALS. That’s because a side effect of anticholinergic drugs is that they decrease saliva production. Excess saliva is often hard for people with ALS to deal with, especially when they have trouble swallowing. She also may be agitated or upset for other reasons. She could be having muscle cramps or restless legs syndrome, something that seniors frequently encounter, with or without ALS. There are drugs and treatments available for that. Your mother may also be experiencing respiratory problems. People with ALS often develop difficulty breathing, which is related to weakness in the muscles that are involved in respiration. It’s possible that sleeping medication could make the situation worse. That’s because as she sleeps more soundly, she may find it harder to breathe deeply, and she awakens when the amount of oxygen in her blood dips below the necessary level for good oxygen circulation in the body. That might cause her to feel agitated or uncomfortable, and let’s face it: going to the bathroom is a natural thing to want to do when you’re uncomfortable in the middle of the night. Again, I am speaking in generalities since I have not evaluated your mother personally. Your mom might benefit from pulmonary function studies or possibly an “overnight sleep study” to assess the situation. Her physician may decide to make it easier for her to get the oxygen she needs during the night by giving her what is called non-invasive ventilation (“Bi-Pap”), a pressurized breathing system that involves putting a plastic mask over her nose and mouth at night, with a machine doing some of the breathing work for her. Complicating all of this is the fact that your mother is having trouble speaking. That means that her specific needs are hard for her to express, making it harder for your dad to make her comfortable. A variety of communication aids and devices are available to help with that. All of these possibilities point to the fact that treating ALS is multi-faceted and involves a broad understanding of the unique challenges of the disease. That’s why I would strongly recommend that your mother regularly visit an ALS clinic in addition to continuing her care with her primary care physician. In the clinic, she will be seen by a neurologist who specializes in ALS and a team of people, including respiratory and physical therapists, a nutritionist, an occupational therapist and a nurse, who would provide her with practical, multi-disciplinary care and support.
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