“I have had it for the entire time that I have served in the United States Senate,” Collins, 73, told News Center Maine. “It has absolutely no impact on my ability to do my job or on how I feel each day.” Collins recently announced in a video that she is running for a sixth term, and online comments called attention to the shakiness in Collins’ hands, voice, and head.
This is the first time Collins has discussed her diagnosis publicly. “The tremor is occasionally inconvenient, and sometimes the subject of cruel comments online, but it does not hinder my ability to work,” she said in a statement to the Associated Press.
Essential tremor manifests most obviously as shakiness in both hands and arms. It can also affect a person's head, voice, or lower limbs.
The tremor itself appears during activity rather than at rest. "The primary manifestation is a tremor that occurs when people are using their hands and their arms—so for example, while writing, while drinking from a cup, anything that involves hand usage," Louis says.
Dr. Albert Fenoy, director of functional neurosurgery at Northwell Health, describes it similarly: "It's a movement disorder that causes rhythmic involuntary shaking, most often in the hands when a patient's trying to move—so not at rest, but like an action- or an intention-type tremor."
Is essential tremor progressive?
Yes, but slowly—Louis says it worsens at a rate of about 1% to 2% per year, and not in a strictly linear way.
The two conditions are often confused, but they show up differently—and essential tremor is far more common (and less serious). "It's as much as 20 times more common than Parkinson's disease," Louis says.
People with essential tremor have a 4 to 5 times higher risk of developing Parkinson's disease than the general population. But Louis emphasizes the absolute numbers stay low. "Any one of us has about a 0.5% to 1% risk of developing Parkinson's disease during our lifetime,” he says. “It just means essential tremor patients have a 2% to 4% chance of getting it, so the vast majority do not get Parkinson's disease.”
What causes essential tremor?
What researchers have identified are degenerative changes in the cerebellum—the area at the back of the brain that helps coordinate movement. "Research that we and others have been doing for the last 10 or 20 years have identified degenerative changes in the cerebellum, which is an area of the brain that's sort of right at the back of the brain," Louis says. Specifically, a population of neurons called Purkinje cells appear to deteriorate, and experts believe that's the underlying driver of the tremor.
Age is the clearest risk factor. Essential tremor can show up at any age—Louis says he's seen it in 1-year-olds—but prevalence climbs steeply with each decade starting in a person’s 50s, 60s, and 70s. Fenoy adds that patients with a strong hereditary component "typically present at a much earlier age."
"There's some emerging data over the last 10 to 20 years that patients with essential tremor can experience some mild cognitive difficulties," Louis says. Traditionally, the issues have involved executive function. "That's sort of being able to organize thoughts," he explains. More recent work, including studies from Louis' lab, has also found that some people with essential tremor have amnestic problems, meaning difficulties with memory.
The shift in understanding has also affected how clinicians refer to the disorder. The condition was long called "benign essential tremor"—the terminology Collins used in her announcement of her diagnosis—but among medical professionals, the word "benign" has been dropped. "Patients don't like that term because it tends to minimize the problems that they have," Louis says.
How is essential tremor treated?
Fenoy notes that no medication targets tremor directly. Instead, the drugs commonly used are "geared to kind of slow down the nervous system"—typically a heart-rate-reducing medication and an anti-seizure medication. "They're good starting points. They don't work perfectly, and they also have associated side effects such as sedation or nausea," he says. A new drug is currently under review with the U.S. Food and Drug Administration, Louis notes, and early data looks “somewhat promising,” though it will be months before there's clarity on whether it's approved.
With deep brain stimulation—the "gold standard," Fenoy says—surgeons place an electrode deep in the brain, targeting a specific node in the faulty tremor circuit. "When we stimulate, it causes a functional block. It blocks that pathway with stimulated electricity, so we can block that pathway and we can take away that tremor." If the procedure is done on both sides of the body, "it affects both arms and actually stops tremor everywhere." The electrodes are connected by wires running down the neck to a pacemaker-like battery in the chest that powers the device.
The newer option, high-intensity focused ultrasound, is incisionless—no cutting required. "We focus ultrasound beams through the skull to create a lesion," Fenoy says. "We burn an area, the same target in the brain where we put an electrode, and instead of doing surgery, we just kind of make a roadblock by burning that tissue, destroying it. That takes away tremor as well." It's used for tremor on one side of the body, but it's "extremely effective,” he adds.
Patients typically pursue treatment for one of two reasons, Louis says: "The two things that drive a desire to be treated on the patient's part are embarrassment, and also functional difficulty. "Essential tremor most often affects the hands, but it can also affect the head and voice. Katharine Hepburn's quavering voice and head tremor in the film On Golden Pond is a classic example, Louis notes—"that characteristic quaver to the voice was part of the tremor that Katharine Hepburn had."
Essential-tremor patients can also develop some other neurological symptoms, but they tend not to be severe. Some people experience slight gait ataxia, meaning a bit of unsteadiness while walking, "but it's generally very mild, and it's not something that really requires that they use a cane or even that they end up in a wheelchair," Louis says.
Why isn’t essential tremor talked about more?
Fenoy's bottom line for patients: Essential tremor doesn't have to be something you simply put up with. "This is a disease that's benign, so it's not going to kill you, but it bothers patients, and they don’t have to live this way. If their quality of life is suffering, there's something to do about it."
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