5-2-11: The Physical Effects of ALS
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, he talks about the physical progression of disease: what’s actually happening to his body, what it feels like, and how it’s affected his emotions.
“It’s not just the voice. If people want to listen to these conversations, they ought to know what’s in progress…it’s called a neuromuscular disease, and what begins to happen is the nerves start to misfire as they wither, and when they misfire, they trigger muscle tissue. Since it started with me in the brain stem, that’s the muscles of the throat and mouth, of my ribcage, and diaphragm, which helps me breathe.”
Dudley says the changes in his muscles makes it feel like there are bunches of butterflies inside him: “I can feel the fluttering of the muscles…from the outside it looks like piano keys. They ripple. As they do that, the muscle tissue dies….Late in the afternoon, when I get tired, I feel like a whole nest of butterflies. The effect is that the muscles get weaker. They shrink. I’ve lost twenty pounds or more, and most of that, unfortunately, is muscle tissue. I’m weaker.”
He said there are upsides to losing the weight, “I’ve actually gotten a few ‘Hey there, big boy,” kind of looks, which is nice. I like this stage of the disease for that reason, in part…it’s my cosmetic phase. But it means it’s harder for me each night to lift the dog into bed. I’m beginning to have trouble holding a pen in the right hand. There are other little things — and what it means in terms of breathing is that I can’t inflate my lungs enough.”
He says he tries to figure out what these changes mean for his overall prognosis: “I guess my first reaction is to try to get a handle on what part of the larger calendar this phase is. In other words, if I’m in phase A, how many phases are there? How long does it all last? … They say the shortest calendar on this disease is that some people die in as little as six months, some live well past twelve years. It varies, but for people like me, who start out with a problem with breathing, the bulbar kind, that’s a shorter lifespan, usually.”
Dudley says that as the disease progresses, he’ll have to make choices–such as whether to undergo a tracheotomy to help him breathe. “That all gets into what I call the ‘ick’ zone, and I’m not sure if I want to be in the ick zone.”
You can listen to all of the conversations we’ve had with Dudley in the series “Living with Lou: Dudley Clendinen on a Good, Short Life,” at this link.