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RAISING TEACUPS from saucers or spoonfuls of soup or cereal from bowls are challenging for hands that shake as they move, most likely caused by Essential Tremor (ET)—not Parkinson’s Disease (PD), which shares the rhythmic trembling but usually occurs in the body at rest.
Essential Tremor—previously called familial tremor, benign essential tremor and hereditary tremor—is the most common movement disorder, affecting an estimated 10 million Americans. Katharine Hepburn was a famous sufferer.
“To drink without using both hands” was the greatest wish of Tim Dobbyn, a 60-year old writer who lived with ET since age 9 before trying an experimental surgery for ET, he told NBC news.
Handwriting by someone with ET tends to be large and tremulous—rather than slow and very small as in PD. While dopamine is depleted in Parkinson’s —it’s visible on brain scans—that is not so with ET. For sufferers of both, though, tremors can be made worse by anxiety, stress, fatigue, physical exertion and fever.
Essential Tremor is often associated with a family history, most commonly begins after age 40 and can range from mild to disabling. It can interfere with eating and drinking as well as activities like writing and shaving; and cause dangerous behaviors for sufferers such as throwing objects or hitting themselves or others very hard. Head, voice, face, tongue and other body parts can be affected by the tremors.
Even for those whose worst moments occur with jiggly teacups and wobbly spoonfuls, ET sufferers live with an ever-present risk of difficulty and embarrassment, along with stress that comes with knowing such “action tremors” might occur —stress that can make the tremors worse.
(Tremors can also be caused by neurological disorders, such as MS and other movement disorders such as dystonia; or as a side effect of drugs, such as asthma medication, amphetamines, corticosteroids, and drugs used for psychiatric and neurological disorders like Thorazine and Mellaril.)
The most common treatments for ET are drugs such as propranolol, a beta blocker and the only FDA approved drug for ET; and primidone, an anti-convulsant, but these don’t work effectively for many patients. Another treatment is deep-brain stimulation, which requires brain surgery to implant a battery-powered device that delivers electrical stimulation to parts of the brain controlling movement.
The newer method tried by Tim Dobbyn focuses some 1,000 ultrasound beams, guided by magnetic resonance imaging, to heat—from 98 to 130-140 degrees—and destroy a very small section of brain tissue in the thalamus. Weill Cornell neurosurgeon Michael Kaplitt compares the effect to using a magnifying glass to focus sunbeams that can heat and even burn leaves or paper—similar to what the boys did with Piggy’s thick eyeglasses in Lord of the Flies.
During surgery, the patient remains awake and is checked regularly, for example, given handwriting samples, to assess progress. Although the procedure is still performed on only one side, in experimental cases, patients who received bilateral treatments had significant improvement with no significant adverse effects.
Since its FDA approval in 2016, focused ultrasound has provided significant lasting improvement in most patients but is still not reimbursed and can cost around $25,000 for each side of the body. Eleven days after the surgery, Dobbyn held a wine glass by the stem and drank with confidence, and he moved around his house much more easily.
But most ET sufferers simply live with their tremors, and many suffer alone. “Other than my mother, I thought I was the only person with this condition. It was confusing, embarrassing and frustrating,” one sufferer wrote anonymously to the International Essential Tremor Foundation.
Another ET support organization is the Diann Shaddox Foundation for Essential Tremor. Both foundations raise money for ET awareness, anti-bullying programs and suicide prevention as well as for research grants.
—Mary Carpenter
Every Tuesday Mary Carpenter reports on the state of our well-being, giving us the download about new shingle shots, lyme disease, chemical additives in food, psychedelic therapy and strength training.
