May, 23, 2022 — Fred Gutermuth, a 67-year-old retiree based in Virginia Beach, can’t remember a time when his hands didn’t shake.
During the earlier part of his life, he never gave it much thought. For 22 years, he had been in the Navy, and the tremor did not hurt his performance. But after he took a job in the Water Treatment Division of his city, testing the water for potential bacteria or toxins.
“We had to record the tests we did, and no one could read my handwriting,” he says.
A neurologist diagnosed Gutermuth with essential tremor, a disorder that causes parts of the body — particularly the hands, head, trunk, and legs — to shake involuntarily and rhythmically. It can also affect the voice.
“For a long time, only my hands were affected but lately I’ve noticed that my voice is starting to tremble too,” Gutermuth reports.
What Is Essential Tremor?
Essential tremor “is one of the most common neurological conditions we see, affecting about 5% of people over age 60,” according to Holly Shill, MD, chair of Parkinson’s Disease and Movement Disorders at the Barrow Institute in Phoenix. It may affect as many as 7 million people in the United States, according to a 2014 study.
ET can be age-related and can develop or worsen as people get older.
“We have looked all over the brain to see if it’s a neurodegenerative condition, but we haven’t found a ‘smoking gun’ in the brain, although there are features in the brain that are recognized to be associated with essential tremor,” says Shill.
There are two “peak” times when ET can develop — in childhood and in older adulthood. Shill says people who develop essential tremor in childhood “tend to be those who more likely have a genetic, hereditary cause and are more likely to report that others in their family also have essential tremor. In fact, about 60% of people with essential tremor report that there is a family history of it.”
Nichole Harrison is a 50-year-old resident of Australia who has experienced ET all her life.
“It started when I was a toddler,” she says. “My parents didn’t recognize it, and just thought I was a nervous kid. I thought I was a nervous kid, too.”
Harrison has become instrumental in raising awareness of ET through her YouTube and Facebook videos, where she calls herself “Shakey Nan.”
“My mother’s great-grandmother was nicknamed ‘Shakey Nan’ by the kids. She was diagnosed with Parkinson’s disease, but she had a head tremor and a whole-body tremor when she walked and did fine things. Now I realize she probably had ET,” says Harrison.
One of Harrison’s siblings has a tremor, and Harrison noticed shaking in her father’s hands as well. “It’s recently clicked into place that I must have a ‘double whammy,’ inheriting essential tremor from both sides of my family.”
Myths and Misinterpretations
Essential tremor is often confused with Parkinson’s disease, but they’re different conditions.
“There’s an easy way to distinguish between the two,” says Shill. The tremor in ET is an “action tremor,” which appears when the person is engaging in activity like trying to use his/her hands. The tremor in Parkinson’s is a “rest tremor,” which appears when the hands are quiet and disappears when the person is using their hands. Additionally, unlike Parkinson’s, essential tremor typically does not cause stooped posture, slow movement, rigidity, or a shuffling gait.
Patients with ET are “often regarded as frail and nervous, which is far from the case,” Shill says. “Just because someone is shaking doesn’t mean they are nervous or impaired — although stress can make the symptoms worse.”
Someone with ET may be “reluctant to stand up and speak in front of people, get food at a buffet table, or eat at a restaurant,” which are situations that highlight the tremor. “In that sense, ET can be a very socially disabling condition,” Shill says.
Essential tremor also interferes with daily activities like eating, drinking, shaving, writing, and functioning in the workplace. The impact on quality of life can generate stress.
Harrison says people with essential tremor are often misperceived as being under the influence of alcohol or drugs, even by health care professionals, because of their shaking. One woman with ET told Harrison that she went to the hospital for treatment and a doctor stopped her at the door and said, “Come back when you’re sober.”
Treatments and Management Approaches for ET
A number of medications are currently available for essential tremor, says Shill. The cornerstones of medication treatment are primidone (an anti-seizure medication) and propranolol (a medication usually used to treat high blood pressure), which reduce tremor in roughly 40% to 50% of patients. “However, not everyone responds to these, which can be very frustrating.”
Deep brain stimulation is a surgical approach “especially useful for people with fairly advanced tremor who have tried a number of medications over the years,” Shill says.
It delivers electrical stimulation that regulates the abnormal signals via electrodes implanted in the thalamus, a structure deep in the brain that coordinates and controls muscle activity. Brain stimulation can reduce tremor, especially in the hands and legs, and has a high rate of success in improving quality of life in people with ET.
Focused ultrasound is a noninvasive technology that focuses multiple beams of ultrasound energy in a targeted way on deep brain structures, particularly the thalamus, without damaging surrounding normal tissue.
“No incision is required in the scalp and skull, although the ultrasound does burn a little hole in the thalamus to disrupt the tremors,” Shill says.
Gutermuth said the medications he tried were “sort of useless.” Focused ultrasound had been recommended but was not at that time covered by insurance. (Since then, focused ultrasound for ET is covered by Medicare and some other insurance companies are following suit.) Instead, he tried deep brain stimulatoin, which was helpful. “I was able to keep my job and retired when I was ready to do so.”
Occupational Therapy and Stress Reduction
Shill recommends occupational therapy “to help people with ET find tips and tricks to live better.”
An occupational therapist can help patients learn new techniques and can suggest devices (like weighted utensils, writing instruments and cups, a computer mouse that compensates for tremor, and voice recognition programs that can cut down on the need to type and write) to make daily activities more manageable, artificial devices like splints and braces to help to stabilize the arm, and deep breathing to assist with relaxation.
There are stimulator-type therapies that do not require surgery and might be useful, says Shill. For example, a noninvasive stimulator bracelet has received FDA clearance.
Shill also recommends using weights and doing exercises to strengthen and tone muscles. Approaches that increase relaxation and help people to control breathing, such as yoga, meditation, biofeedback, and neurofeedback, can also be useful.
Humor Helps
When Harrison’s son was young, she volunteered to read to children in his class and her hands shook so much that she could barely hold the book. “The children were laughing at me. I ended up walking out in tears. I knew I’d never be able to volunteer like that again, and that broke my heart because I’ve always been a mom who wants to be there for everything having to do with my kids. I started to hide away.”
The COVID-19 lockdown “made things much easier because I was able to live my whole life at home,” says Harrison.
But when she turned 50, she got engaged and, in anticipation of the reaction of friends and family to her shaking at the wedding, she began posting videos on Facebook to prepare them. “The videos took off around the world,” she reports.
Sometimes, humor lightens things up, says Harrison. “If I’m asked to carry something I might say to a family member, ‘do you want it on the floor or do you want it carried?’ That names the ‘elephant in the room.’ I’ve always been able to laugh at myself or with my immediate family and friends, but never before in public.”
Gutermuth agrees. “Try to maintain your sense of humor,” he advises. “You may be spilling things all over the place, but if you can laugh, it puts other people at ease to laugh with you.”
Reach Out for Support
Harrison recommends joining a support group. The International Essential Tremor Foundation and HopeNet sponsor groups, and there are groups available on Facebook.
Harrison and Gutermuth are passionate about educating the public and health care professionals about this condition. “If I see someone shaking, I try to educate them and tell them that there’s help for this condition, whether medical or surgical,” says Gutermuth.