This story first appeared in MPR News on December 17, 2013
This month marks the third year since Bruce Kramer of Minneapolis received a medical diagnosis that changed his life in an instant. Kramer, who was 54 at the time, had noticed his left foot feeling heavy and a little floppy. His ordinarily muscular thighs would tremble noticeably, and he had taken a couple of falls and found it tough to get back up.
The diagnosis hit hard: It was ALS, Lou Gehrig’s Disease, a fatal illness that slowly shuts down the body’s muscles. The disease is doing just that to Kramer’s body. His limbs have little use now except for small movements of his wrist and fingers. Even his breath was getting more shallow — until recently.
Kramer has had a device implanted that’s like a heart pacemaker, but for a diaphragm. It’s called a “diaphragmatic pacing system,” or DPS and he’s one of only a handful of Minnesotans with ALS to have had one implanted. Dr. Jeffrey Strommen, the Mayo Clinic physician overseeing Kramer’s use of the DPS, says, “he’s more energetic. He feels stronger and we do have some evidence, albeit, limited that this may actually prolong survival.”
Here are some highlights from what Bruce Kramer had to say about this new development. Click on the audio link above to hear the full conversation.
“I have a friend in Kansas City that I Skype with every now and then who actually had the system put in pretty early with his ALS. The reason he did is because it hit his breathing pretty quickly, but he told me at that time that I really ought to consider it because it felt a lot better. And, since that time, I’ve been doing a lot of research on it and, you know, gone to the websites. And I’ve talked to people with ALS who have had the DPS put in all over the country, and to a person they have felt that it has improved their quality of life, so when it looks like the things that were going to come together finally came together I had to make a decision quickly and I decided to do it. It’s done laparoscopically with five incisions in the belly and you end up with a series of electrical leads coming out of your belly.”
“It’s an electrical shock that’s being delivered. Its electrical supply is outside the body and the electrical shock actually contracts the diaphragm so I feel the electrical shock all the way around. There are four electrodes on my diaphragm; one on the front, two on the side and one in the back. I feel that shock, but then I feel the diaphragm contract. If you are at all aware of a diaphragmatic contraction, it makes you feel the need to haul in air. … I have it turned off right now because it fires every five seconds and when it fires, you know, your diaphragm contracts and when your diaphragm contracts it’s like guhhhh, so you kind of sound funny when you’re trying to talk around it. But, I’m learning how to.”
“It was almost immediate. From the time they turned it on I could feel my brain picking up. I felt like I was getting oxygen again, and I’ve been feeling pretty tired. I’ve been feeling like my voice is really going, really, really soft, and now I can actually get some diaphragm underneath my voice. And so, I’m feeling better, but I want to emphasize that this is not a cure. We’re not even sure if it lengthens life, but quality of life is what I’m looking for, and so far, so good. … What I see is, is that technology has a lot more to offer us in ALS right now than drug therapy. And it’s through technology that we’re able to work around these physical problems that we’re presented with. This is a piece of technology. It aides the breathing, and breathing is one of the things that goes. And so, I see this as being something that could become a treatment of choice for people with ALS, particularly if they can get good data on people like myself.”
“I’m so used to getting up in the morning and realizing that I feel a little worse than I did the day before, and the day after I started DPS I got up and felt better. And, it just threw me for a loop. I thought, wait a minute, you can’t feel better, because you have ALS and you’re going to feel worse. I feel like I have the perseverance again to hang with this a little longer and so then the question is well, does that make you feel hopeful and it’s a place I mustn’t go. I think I need to remain hopeless. … There is a difference between hope and possibility. Possibility is about the…it’s rational. It’s about the things that you can concretely grasp that make your life meaningful, worthwhile and better. Um, so, my body continues to get worse, there is no question, but there is possibility in the DPS that within the worsening of ALS I still have some energy. I still wake up feeling like I’m still here, I’m okay and I can do this, and that’s not really hopeful. I’m not holding out for a cure. It isn’t going to happen in my lifetime I’m pretty sure, but I’m hopeless in the possibility.”