6-27-11: The Idea of Being Compromised
Dudley Clendinen is an award-winning author and journalist who lives here in Baltimore. A former reporter and editorial writer for The New York Times, he found out in November, at age 66, that he has amyotrophic lateral sclerosis, or ALS, more popularly known as Lou Gehrig’s disease.
There is no known cure for ALS, and once a person is diagnosed, they usually live between 1.5 to 3 years.
Over the past few months, Dudley has been speaking with Tom Hall about living with ALS. In this conversation, they talk about the different treatment options for ALS with Dudley’s doctor, Jeffrey Rothstein, who is the Director of the Robert Packard Center for ALS Research at Johns Hopkins University. He’s also a professor of neurology there.
Since ALS has no treatment and no cure, Tom asks Dr. Rothstein what can be offered to Dudley and other patients with ALS.
Jeff Rothstein says there is only one FDA-approved drug for ALS, called Rilutek. “It’s not what patients want; it’s not what we want. But it will slow the disease down slightly. It’s a bit like a weak cancer therapy. Patients live about a year longer on this drug, at least from the most recent research. They won’t feel any better. They won’t feel much from that, other than the notion, or the faith, that they will live longer.”
Dr. Rothstein says the two largest problems ALS patients face, the survival related problems, are eating and breathing. He says the respective treatment options for them are tube feeding and tracheotomy, which very few patients opt for. “There’s a hole cut in the throat, and you’re hooked up to a machine that breathes for you. All of us have seen this on TV before. When a patient has a tracheotomy and is hooked up to a ventilator, the device that we use, the patient will not die of ALS. The patient will go on to live a normal life span, but a life complicated by the ability to do anything motorical, to move any muscle. That is, it doesn’t stop the disease, but the machine is breathing for you.”
Dudley says he’s not sure if he’ll take that option. “A lot of what I do for pleasure and for work depends on my voice…when I can’t speak anymore, I’m not sure that it’s going to be a life I enjoy or feel that I am contributing to. If I can still write, I might. But if my hands don’t work, I’m not sure I’ll be easily able to write. Some people have become famous for being stoic enough to continue to rely on machines that can read the will of their eyebrows or the movement of their eyes. I’m not that stoic.”
Dudley says he’s still not afraid of dying — but the idea of being compromised is abhorrent to him. “I am afraid of that,” he says. “I don’t know if the word is fear, so much that it repels me….It would be a torture, I think, to the people who know me and love me. I’ve been through that with my mother and my aunts and a host of older friends, and if I can prevent that, I intend to.”
Jeff Rothstein also talks about how he responds when a patient wants to stop treatment. “The vast majority of patients will tell me that there’s a limit. And I’ll support them….I’m not the one who’s going to tell them ‘No, I’ll give you devices to go beyond that,” one — because I really can’t. And two–because patients are intelligent. They can make that decision.”
In this extra just for the web, Dudley and Jeff speak in more depth about the cost of Rilutek (also known as Riluzole), the FDA-approved drug that treats ALS:
You can listen to all of our conversations with Dudley Clendinen at this link.
The out music for this segment is the song “Slip Away,” by Kathryn Calder, from the album “Are You My Mother,” which she made while caring for her mother, who had ALS.