Living While Dying: An ALS Story

Bruce Kramer felt that the doctor who first told him that he had ALS did not deliver the devastating news with the proper compassion. Bruce decided to go back and give the doctor a critique on his bedside manner in the hope that future patients would have a better experience.

Bruce Kramer talks about his thoughts on mortality and spirituality. He also has an encounter with the Dalai Lama which makes him think about what it means to be blessed.

As ALS takes its toll on his body, Bruce Kramer decides that the time and energy required to go out and see friends is too great. Now, if people want to see him, they need to come to Bruce. And life at home becomes quieter.

Bruce Kramer and Matthew of Mind/Body Solutions speak at an event at the University of St. Thomas. They talk about how all of our bodies are breaking down. They say it's important to embrace that reality rather than fight it.

Bruce Kramer responds to a series of articles in the New York Times which argue that suicide is a logical choice at the end of life. He also talks about the decision to surgically-install a device which helps him breathe and whether that decision was a way of denying his inevitable death.

In the fall of 2013, the losses of ALS - or paper cuts, as Bruce called them - kept coming.

Two recent photographs of Bruce Kramer illustrate his frame of mind. In one, he didn't recognize himself at first and then saw what he calls the "ALS look." In another you see his pure joy at becoming a grandfather for the first time.

Bruce Kramer faced some important decisions as his ALS progressed. He contemplated whether he should get a diaphragmatic pacing system which would help him breathe. And he wondered about the value of checking things off a "bucket list."

Bruce Kramer believed that researchers need to rethink the way they test new drugs on ALS patients like him. He argued that the double-blind testing model doesn't work for a devastating fatal illness like ALS. In this episode of Living While Dying, we also hear from a bio-ethicist about the decision to deny some patients access to an experimental drug.

Bruce Kramer helps medical students understand the patient's point of view. He has advice about how doctors should deliver bad news.