Edward 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. 

Dr. Kasarskis

Q: I know two people with ALS, and both experienced a lot of stress in their lives. Could there be a connection between experiencing a great deal of stress and getting ALS?  And does pseudobulbar affect the course of ALS?

A: Honestly, there is so much stress in people’s lives, if there were a direct connection between stress and developing ALS, we would most likely be seeing many, many more people with ALS than we actually do.  But there is very little in the medical literature on this topic.

My personal observations support the concept that people who manage their stress well, who have adapted well to changing circumstances, and who have good social support systems, make informed, timely decisions about their disease and its management.  The ability to deal effectively with stress certainly after being diagnosed with ALS involves focusing the mind on constructive approaches to the illness, which contributes to better survival and quality of life.  These issues need more research.  We also know that people who go to multi-disciplinary ALS clinics experience enhanced survival as compared to those going to a single practitioner’s office for care.  I frequently tell patients that "you can’t do ALS by yourself,” and our multi-disciplinary clinics offer ALS patients a variety of expertise, counseling, and support.

How might all this be related to pseudobulbar affect, or PBA?  I wrote about PBA a few months ago concentrating on the clinical findings and the new treatment for PBA.  To recap, PBA can occur with many neurologic diseases, including ALS, brain injury, or stroke.  Patients may find themselves crying uncontrollably at something that is only moderately sad or laughing uncontrollably at mildly amusing things.  In a broader context, PBA can be part of a constellation of additional symptoms of cognitive difficulties, impaired planning, and impulsive behaviors (together labeled FTD, or frontotemporal dementia).  Hence some, but not all patients with PBA, may have trouble planning and executing activities or actions with an eye to the future, or can find it hard to follow simple directions. They can have difficulty following the health team’s recommendations or seeing the consequences of their actions, or inactions in this regard.  In many ways these issues likely cause stress for the patient (they certainly do for the family) as they add confusion and complexity to the patient’s environment.

Although the issues of stress, PBA, and FTD have not formally been linked in the research literature, common sense argues that stress is not helping the situation at all.  The bottom line about stress and ALS is relatively simple: To the extent you can find effective coping skills for dealing with the disease, you can expect to find real benefit. 

If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.