Ask the Doc: Q & A with Edward Kasarskis, MD, PhD

Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital 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. 

Q:  Is it normal for people with ALS to experience depression? What can we do about it?

Dr. Kasarskis: Usually there are phases in how people experience the disease. People are initially shell shocked and need time to put their new diagnosis into perspective. Some level of depression is understandable and a normal reaction to a loss. But people don’t usually experience long-term depression. To be sure, they may be depressed for a period of time but most then develop a certain determination to deal effectively with the disease and to get the help and support they need. They typically settle into an emotional coping pattern similar to what they experienced before they developed ALS.

Some people with ALS need and benefit from medication and counseling just as do many others in the general population. Most are helped by talking about the issues facing them and formulating a concrete plan for what they should do about each problem or issue that comes up. People want clear direction from their health care professionals about what to expect around the corner, and how to prepare for the future. Patients and their families value this guidance so that they can understand the challenges facing them in the future and set priorities.

Caregivers of people with ALS can also experience depression, in addition to physical fatigue. Getting additional help and support is absolutely crucial. The ALS Association and the physicians and staff at ALS Certified Centers of Excellence and Clinics can work with caregivers and help find necessary resources.

Research indicates that an ALS patient’s quality of life remains essentially unchanged, even as their physical condition worsens.  I suspect that much of this is due, in part, to the unceasing physical and emotional support of their family.  Interestingly, studies of quality of life in people with ALS and their caregivers have found that an individual’s level of satisfaction with life before diagnosis is usually predictive of how satisfied he or she will be after developing ALS. When it comes to caregivers, satisfaction with life at the point of their loved one’s diagnosis is also important, but individual differences -- such as age and the speed of disease progression -- can have a significant impact.

Each issue we feature a leading neurologist specializing in ALS responding to a question. If you would like to submit questions for a future Q & A, please send your questions to Amber Walters. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.