Huntington’s, through a glass rosily
Date: July 15, 2011
“Nobody gets cured of emphysema. It’s a progressive, misery-inducing ailment,” psychiatrist Adam Rosenblatt begins, “but you don’t see pulmonologists broken up about their patients when they come to clinic.” The same is true, he adds, when you treat congestive heart failure or severe osteoporosis: “Any physician’s job, to the best of their abilities, is to make life as good as possible for patients, no matter how serious the disorder.”
Rosenblatt takes a dim view of clinical crepe-hanging around patients with progressive diseases. It’s natural to do, he says, but even the suggestion of pity or—worse—hard-heartedness can have catastrophic results for patients and their families. “We were taught to be aware of such things in medical school, but that can fade,” he says.
As clinical head of Hopkins’ Baltimore Huntington’s Disease Center, Rosenblatt knows in particular the workings of that illness. Unlike Parkinson’s or Alzheimer’s, which usually strike later in life, HD typically starts during prime working and family-raising years, before patients have financial security or a satisfying bank of life experiences. “It’s a cruel disease that way,” he says. Moreover, most patients and those who know they carry HD’s dominant gene have seen family members struggle with the disease. They’re aware that uncontrolled movements and dementia lie ahead.
Still, Rosenblatt says, an unhelpful mythology dogs Huntington’s. He once bought into it himself: “I believed all the stereotypes about HD: You can’t do anything to help these patients with a horrible, progressive illness. You have to be a saint to work in this field.” Not true, he says. “The saints burn out in about two years and are gone, and patients with Huntington’s can enjoy a good quality of life for quite some time.”
Rosenblatt advocates putting on the armor of a helping attitude. “The physician that patients need has a positive outlook and a sense of humor,” he explains, “someone who’s pragmatic and points out victories where they come, who actively seeks to make life better in the time that remains.” He mentions a need for professional detachment. “That doesn’t mean you’re humorless or cold, but you must find some way to separate the clinic from the rest of your life.”
Help also comes from knowing the disease. One new patient of Rosenblatt’s, for example, was admitted because of severe insomnia and inertia. He wouldn’t talk or leave the bed. It wasn’t depression, says Rosenblatt. But neither was it totally apathy—part of the executive function syndrome that’s an HD hallmark. A look at medications showed that several he was taking could worsen the man’s symptoms. “They were tapered off and we put him on a ‘take no prisoners’ approach,” says Rosenblatt. That meant a regular schedule with mandated activities. Now the patient is active by day and sleeps well at night. His family calls his improvement remarkable.
The optimum for psychiatry, Rosenblatt suggests, blends being aggressive, providing relief where you can, and having aequanimitas—calmly accepting what comes.
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