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Living While Dying: An ALS Story
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Living While Dying: An ALS Story

Author: Minnesota Public Radio

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Bruce Kramer lived a remarkably rich life because of – not despite – an incurable, always fatal disease: Amyotrophic Lateral Sclerosis, or Lou Gehrig’s Disease. He was diagnosed with ALS December 6, 2010. While the disease diminished his body, it expanded his life and spirit. He shared that experience with Minnesota Public Radio News host Cathy Wurzer over nearly five year of conversations.
29 Episodes
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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."
31. Saying goodbye

31. Saying goodbye

2016-04-0813:55

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.
30. Tipping point

30. Tipping point

2016-03-1116:10

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.
29. A love story

29. A love story

2016-01-2214:23

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

28. Honesty

2016-01-0809:48

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.
27. Focus

27. Focus

2015-12-2424:01

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.
26. Leadership

26. Leadership

2015-12-1108:15

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.
25. Being tested

25. Being tested

2015-12-0418:53

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

24. Prepared for ALS

2015-11-2509:39

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.
22. Teaching doctors

22. Teaching doctors

2015-11-0610:08

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.
19. Embracing loss

19. Embracing loss

2015-10-1620:28

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.
18. The peanut gallery

18. The peanut gallery

2015-10-0919:23

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.
17. Paper cuts

17. Paper cuts

2015-10-0213:51

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

16. Two pictures

2015-09-2511:28

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.
15. bucket list?

15. bucket list?

2015-09-1814:27

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."
14. drug trial ethics

14. drug trial ethics

2015-09-1115:28

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.
13. teaching doctors

13. teaching doctors

2015-09-0412:04

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