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

Dr. Kasarskis

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: My husband has difficulty accepting the need to adapt to ALS as it progresses. When the doctor or team members suggest he consider getting some additional help like a cane, or a wheelchair he bristles, and puts off the decision. What can I do?

Dr. Kasarskis: This is a common frustration. And it’s actually tough, since we all want to respect the person’s autonomy and their desire to make their own decisions. Typically, the family tries to let the person with ALS call the shots, but then finds they are getting increasingly anxious as they worry their loved one will fall, or choke on food, or have some other kind of difficulty.

Some people with ALS view recommendations to get a new assistive device, a PEG tube for feeding, or BiPap for breathing as a sign that they’re losing the battle with ALS. So they fight on without these aids. Their approach to the disease may reflect their decision-making style before being diagnosed with ALS. Sometimes someone’s coping style was extremely effective when they didn’t have the disease, but it doesn’t work well now.

It’s important to make sure your husband isn’t depressed, and your physician may want to prescribe an anti-depressive medication. It may also be valuable to have a formal battery of neuro-psychological tests done which may help you (and him) better understand any issues your husband may be dealing with. It is also possible that he may have developed a cognitive inability to make these kinds of decisions or to deal with his emotions effectively, a situation that can occur in people with ALS.

Too, you may both benefit from meeting with a counselor who can help you discuss the challenges you face together and assist you in effectively expressing your concerns about your husband’s tendency to delay getting the assistance he needs to effectively cope with his diminishing neuromuscular strength.

We do know that people with ALS must be good at solving problems because they face a variety of significant serial challenges. As Gilda Radner was fond of saying, “It’s always something.” The trick is to deal with issues as they arise by actively making decisions. Ignoring problems will not make them go away.

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.