OPMD: Like a Frog in Boiling Water

Article Highlights:
  • Part of the 2009 In Focus report on oculopharyngeal muscular dystrophy (OPMD), this article tells the story of Ken Lang, a middle-aged man with difficulty swallowing (dysphagia) who underwent surgical procedures that corrected the problem.
  • The article discusses Lang's severe swallowing problems, starvation, cricopharyngeal myotomy, repair of Zenker's diverticulum, voice improvement and swallowing improvement.
by Margaret Wahl on October 1, 2009 - 3:27pm

QUEST Vol. 16, No. 4

Ken Lang’s OPMD symptoms began with swallowing problems, when he was about 50. “They were fairly mild at first,” he says. “There were certain foods I could no longer eat,” such as rice and ground beef. “I couldn’t eat a hamburger. I couldn’t swallow it. It would get stuck. I’d have to cough it up, or I’d feel a sensation of choking. Over the course of time, the symptoms got a little worse, and my voice started to go, which was a real bummer.”

Lang, who’s been a community organizer and radio personality, has relied on his voice a great deal. His father had also experienced trouble talking late in his life.

Ken Lang, shown here at a friend’s ranch in Washington state, says throat-muscle surgery saved his life.

Despite knowing his family history, he managed to more or less ignore his symptoms until it was almost too late. “I was like a frog in boiling water,” he says, referring to the hapless amphibian who’s being cooked so slowly he doesn’t notice there’s a problem until it’s too late. “I had all these things going wrong. I couldn’t eat. I was losing weight. I just chalked it up to having muscular dystrophy.” Had he postponed seeking medical attention any longer than he did, “it wouldn’t have mattered,” Lang says. “Some of my vital organs were shutting down.”

At age 60, the 5-foot, 10-inch Lang weighed 103 pounds. “I was starving,” he says. Eventually, he wasn’t even able to swallow liquids.

Fortunately, he went to see throat surgeon Albert Merati at the University of Washington Medical Center in the nick of time. By the time he saw the doctor, Lang’s throat muscles had weakened so much that a balloon-like pouch, known as a “Zenker’s diverticulum,” had formed. “This pretty much blocked me from eating, period,” he says.

Lang underwent a surgical procedure called a cricopharyngeal myotomy, in which a tight muscle above the esophagus is loosened. The Zenker’s diverticulum was repaired at the same time, although he had to undergo a revision of that repair later on.

“Since that time, not only is my voice back,” says Lang, “but I have no swallowing problems whatsoever.” 

The surgery, he says, “saved my life.” His weight is now stable at 170. “It’s a little heavy for me, but I’ll take it.” 

While swallowing and speaking impairments have been Lang’s main concerns with OPMD, he’s also begun to experience some eyelid drooping, for which he’s considering surgery, and noticeable weakness in his legs. 

“I was a runner and a climber for many years,” he says. “Those days are gone.” But, he says, “my voice has gone back to being normal and strong, and I can eat anything.”

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