Researching the Unseen Effects of ALS
When most people think of the symptoms of ALS, they think of the loss of muscle control, inability to walk, and difficulty speaking. However, because ALS affects nerve cells in the brain and the spinal cord, there are many unseen autonomic dysfunctions that afflict patients, such as constipation, sexual dysfunction, gastrointestinal disorders, and others. In addition to the physical toll these symptoms take on a person’s body, there is also an acute impact on their mental health and quality of life.
When most people think of the symptoms of ALS, they think of the loss of muscle control, inability to walk, and difficulty speaking. However, because ALS affects nerve cells in the brain and the spinal cord, there are many unseen autonomic dysfunctions that afflict patients, such as constipation, sexual dysfunction, gastrointestinal disorders, and others. In addition to the physical toll these symptoms take on a person’s body, there is also an acute impact on their mental health and quality of life.
Since October 2019, third-year medical student Anika Mazumder has been working closely with the SLUCare ALS Clinic to study the effect of autonomic dysfunction, specifically constipation, on ALS patients. To conduct the study, titled Assessment of the Burden of Constipation in Patients with Amyotrophic Lateral Sclerosis, and Possible Relationship to Dysautonomia, Mazumder uses a series of questionnaires to assess how constipation has affected ALS patients’ daily life. Questions focus not only on the physical discomfort around constipation and other autonomic dysfunctions, but also the psychological impact, and range from “To what extent or intensity have you felt bloated to the point of bursting?” or “To what extent or intensity have you been embarrassed to be with other people?”
“While the patients were waiting to be seen by the doctor, I would go in and introduce myself to the patient and tell them about the project,” says Mazumder. “They were all very interested in participating because this is something that has affected many of them. So many patients have said things like, ‘Yes, I'm afraid,’ or ‘I'm embarrassed to leave my home and go visit my children because I don't want to spend the entire time in the bathroom when I'm there.’” Thus far, the sample size is 44 patients, but Mazumder is hoping to recruit additional participants to reach a sample size of at least 100.
Findings from the study have been presented at the Northeastern ALS Association and Saint Louis University’s Alpha Omega Alpha Honor Medical Society’s Student Research Forum. In April 2021, Mazumder will be presenting the study to the American Academy of Neurology.
For many, the study of ALS extends beyond understanding how the disease functions or how to best diagnose it, or even how to cure it. “I want more research to be dedicated to other aspects of ALS than just the motor symptoms because it's a multi-system disorder,” says Mazumder. “We need more research on ALS patients’ quality of life and their mental health.”
When Mazumder first tells patients about the research project, she explains that answering the assessment questions will likely not alleviate their own discomfort and pain. “I say to them, ‘We won't be able to find anything that might specifically help you, but this will help somebody in the future.’” Even when presented with this realization, patients are eager to help those who may suffer from ALS in the future.