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

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 developed ALS about a year ago. I continue to work as a manager in what is an intellectually-demanding job, but it doesn’t require much mobility. Of course, I don’t know how long I’ll be able to continue. What should I consider as I decide when to resign from my job?

A: As you might imagine, this question comes up frequently. There is no stock answer. Each person’s situation is different. Deciding when you should stop working is a personal decision that depends on many factors:

• What benefits psychological and financial do you get from working? You would need to have a plan for managing your income and health coverage issues and for ensuring you find a way to stay involved in something that interests you. Most of us get tremendous psychological benefit from the work that we do. What will you do to replace this? Write a book? Volunteer within your physical abilities? Travel? You will have to redefine your purpose in life. This is fairly standard retirement advice, but it applies to people with ALS.
  . 
• The pace of your disease: How are you affected by ALS now? What have you been told by your neurologist about what to expect in the months ahead?
  . 
• The nature of the work you do: How would changes in the impact of ALS affect what you are expected to do at work?

For manual laborers such as mechanics or those involved in construction, for example the workplace can be quite dangerous if you have even a little bit of muscle weakness. But someone like you, who works at a desk, may be able to work longer. Even those who do detail work, such as dentists or jewelers, may be able to continue working, as long as they stop doing the particular tasks that their muscle ability will not allow.

Many people with ALS continue working for quite a while but typically have to get job modifications. Talk with your physician, who may even be able to speak directly with your employer. The Americans with Disabilities Act provides certain protections you should know about.

You should be aware that when you decide to leave your job and get disability retirement, the process takes time, even with the Medicare waiver for ALS. Planning ahead will be critical. The process will take at least three months, so get working on filing the application.

Resources: For more detailed information from The ALS Association about how to access government benefits, see “A Professional’s Guide to Assisting Families with Obtaining Government Benefits”

If you would like to submit questions for a future Q & A, please send your questions to theexchange@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.