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On the Brain
June 7, 2021

Sailing to the Mediterranean and Navigating Amyotrophic Lateral Sclerosis

Author Affiliations
  • 1The University of Texas MD Anderson Cancer Center, Houston
JAMA Neurol. 2021;78(8):905-906. doi:10.1001/jamaneurol.2021.1652

It started with constant twitching in his right arm. My mom sent me a video while they were waiting in the emergency room after my dad had a minor myocardial infarction. “I’ve been watching for an hour and it hasn’t stopped,” she said. Given the circumstances, I said we would just deal with it later.

Six months later, at the age of 59 years, we learned of his amyotrophic lateral sclerosis (ALS) diagnosis on the last day of my fellowship, after I had decided to take an amazing job 1000 miles from my family. As the only health care professional in my family, they looked to me for answers. What was I going to say? All I really remembered from medical school was that I knew ALS was something I never wanted (and am pretty sure said I would rather die than have), but how do you say that to your father?

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