Living with ALS, Part I: Music adds solace to Bruce Kramer's journeyby Cathy Wurzer, Minnesota Public Radio
Edina, Minn. — Editor's note: This is the first part of our continuing series following St. Thomas professor Bruce Kramer as he copes with life after being diagnosed with ALS, also known as Lou Gehrig's Disease.
ST. PAUL, Minn. -- On a late July evening earlier this year, Bruce Kramer was working with the Good Samaritan United Methodist Church choir on an anthem he arranged for an upcoming service at the Edina church.
The beautiful melody of the old American hymn the choir was singing, "The Lone Wild Bird," was ripe for a new choral arrangement, he said, drawing on a passion for music that comes from 35 years spent singing in and directing choirs. He wanted the voices in the choir to reach anew for a deeper meaning in the song.
"You touch something very human and very spiritual when you do music," Kramer said that summer night.
Kramer used to direct the choir until a couple of years ago, when he took on new responsibilities as dean of the University of St. Thomas's College of Applied Professional Studies. He was busy, but the music kept him sane.
Now, he may rely on music even more. On Dec. 6, 2010, he was diagnosed with ALS, also known as Lou Gehrig's Disease.
He was stunned by the news. Until a year ago, the 55-year-old Minneapolis resident had little time to slow down. He was always looking for things to do. He rarely slept. He exercised regularly and commuted by bike to work every day. In excellent physical shape, he loved his life.
But in the late summer of 2010, Kramer started noticing odd physical problems. He told his doctor that his left foot felt "funny." It "flopped" sometimes when he walked. His doctor said it was probably nothing but recommended that he see a neurologist.
Kramer put the appointment off, until he fell. Twice.
After a battery of tests, a neurologist took only 15 minutes to give Kramer and his wife the devastating diagnosis.
"It just felt like he could hardly wait to get us out of there. My wife, when we went out to the car, she muttered a number of expletives and said, 'They couldn't even give us a pamphlet?"
Kramer remembers every detail about that morning. The date was Dec. 6, the time was 8:15 a.m. He and his wife went home and retreated to different parts of the house. She sat down and just stared out the window. Kramer went on the Internet and immediately began digging into research.
"I just couldn't believe what I had facing me and then the big thing is you know, what do I do now? What do you do because you read the information about it and there's a lot of information that's hard to handle," he said.
ALS is an incurable, degenerative neurological disease. Generally speaking, the muscles that control everything from the movements of a person's arms and legs, to vital functions like swallowing and breathing, gradually weaken and quit functioning.
A year into his diagnosis, Kramer says he can tell exactly where he's weakening.
"It is a very personal disease. Each person will get it where they get it and then it will move at the speed it will move for that person. For me, it presented at first in my left foot with just a dropped foot. My left leg is very, very weak. My right leg has started to weaken."
Now, music and directing a choir, as the condition works its course, offers him some solace.
"I'm tired. I find myself as I'm standing and I'm trying to hold my hands out, I feel my right hand shaking a little bit and I have to really concentrate to hold it steady. But at the same time, once it starts it's not about me anymore, is it? It's about the music. "
These days, Kramer always keeps a cane nearby. When he directs the choir, the cane rests near his music stand. It serves as a sort of tangible sign of how his life has changed in just a few short months. And in the coming weeks and months, Kramer will open a window on his world coping with ALS, bringing Morning Edition along for the journey.
The disease "makes you focus on the fact that yes, there's the past, and yes, there's the future but this is now," he said. "Probably the greatest gift I've learned from ALS is to try and live in the moment no matter what it is and no matter how bad or how good, to try and live in that moment."
Bruce Kramer: Living With ALS
• Part I: Music adds solace to Kramer's journey
• Part II: Like Gehrig, Kramer turned to Mayo
• Part III: Kramer describes 'The Tell'
• Link: Bruce Kramer's 'Dis Ease' blog
- Morning Edition, 12/06/2011, 6:50 a.m.