Living While Dying: An ALS Story

Los Angeles-based singer/songwriter Anna Schulze was so touched by the "Living While Dying" series that she wrote "Don't You Fade Away," featured on her new album "Pickford Market."

As Bruce Kramer's life nears its end, friends and family gather at his bedside to say goodbye. Cathy Wurzer shares her thoughts on the experience.

As ALS continues to diminish his physical capacity, Bruce Kramer considers when his condition will reach a tipping point. Bruce and his wife Ev rethink Bruce's end of life directives.

Bruce Kramer and his wife Ev Emerson discuss how they fell in love and how their relationship evolved through marriage and ALS.

The choir that he once directed visits Bruce Kramer's home at Christmas. He appreciates the frank and honest conversations he can have with friends and family as the end of his life approaches.

Bruce Kramer says ALS helped him focus on what is important in life: love and relationships. He also talks about a device he's been using that helps him breathe and the decision to enter hospice.

Bruce Kramer taught leadership ethics at the University of St. Thomas. He talked to students about how his training as a leader helped him adjust to life with ALS.

Bruce Kramer is tired of having the progression of his ALS measured with a number. He has embraced living in the moment.

Bruce Kramer tells us that during his childhood, his mother was frequently ill and in the hospital. He says that experience helped prepare him to deal with ALS.

Bruce Kramer and his wife Ev Emerson discuss how their relationship has evolved as she has taken on the role of caregiver.

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.

After being diagnosed with ALS, Bruce Kramer learned to appreciate the value of yoga. He found it to be a freeing and emotional experience. It helped Bruce reconnect with parts of his body that were affected by the disease.

Bruce Kramer reflects on how having ALS has affected his belief in God. He says it has not shaken his faith. He thinks ALS proves that there is something greater than us.

Bruce Kramer participated in a drug trial to determine if Dexpramipexole could slow the progression of ALS. Kramer felt the drug was working for him and was frustrated when the trial was terminated.

Two years since being diagnosed with ALS, Bruce Kramer re-evaluates his priorities. As Christmas approaches, he has the time and solitude to appreciate the season more than ever.

People who've been hit hard by a very serious health challenge wrestle with a lot of questions right after their diagnosis. One of them is, "can I, should I, keep working?" Bruce Kramer talks about his battle with this question.

Bruce Kramer talks about participating in a drug trial, and how it led him to question the bureaucracy of the medical care system.

Bruce Kramer describes how he adjusts mentally to the changes in his physical capabilities brought on by the progression of ALS. He likens it to a snake shedding skins.

A conversation with Bruce Kramer and his wife Ev Emerson about their evolving relationship. As his ALS progresses, she is becoming a caregiver.

When he was diagnosed with ALS, Bruce Kramer was a dean and professor in the University of St. Thomas School of Education. As the disease weakened his body, it made teaching more difficult. It also helped him focus on what was important in his professional life.