May 23, 2022 – Fred Gutermuth, a 67-year-old Virginia Beach-based retiree, can’t remember a time when his hands didn’t shake.
During the first part of his life, he never gave it much thought. For 22 years he had been in the Navy, and the tremor did not affect his performance. But after taking a job in his city’s water treatment division, he tested the water for any bacteria or toxins.
“We had to record the tests we were doing and no one could read my handwriting,” he says.
A neurologist diagnosed Gutermuth with essential tremor, a disorder that causes parts of the body to involuntarily and rhythmically shake – specifically the hands, head, trunk and legs. It can also affect the voice.
“For a long time only my hands were affected, but lately I noticed that my voice was starting to shake too,” Gutermuth reports.
What is an essential tremor?
Essential tremor “is one of the most common neurological conditions we see, affecting approximately 5% of people over the age of 60,” according to Holly Shill, MD, president of Parkinson’s disease and movement disorders at Barrow. Institute of Phoenix. It may affect up to 7 million people in the United States, according to a 2014 study.
TE can be age-related and can develop or worsen as people age.
“We looked at the whole brain to see if it was a neurodegenerative disease, but we couldn’t find an ‘irrefutable gun’ in the brain, although there are features in the brain that are recognized as being associated with essential tremor,” says Shill.
There are two “peak” periods when ET can develop – in childhood and in adulthood. Shill says people who develop essential tremor in childhood “tend to be those more likely to have a genetic and hereditary cause and are more likely to report that other members of their family also have essential tremor. In fact, about 60% of people with essential tremor report that there is a family history.
Nichole Harrison is a 50-year-old Australian resident who has lived with ET all her life.
“It started when I was very little,” she says. “My parents didn’t recognize it and just thought I was a nervous kid. I also thought I was a nervous kid.
Harrison has been instrumental in raising awareness for ET through her YouTube and Facebook videos, where she goes by the name “Shakey Nan”.
“My mother’s great-grandmother was nicknamed ‘Shakey Nan’ by the children. She was diagnosed with Parkinson’s disease, but she had head shaking and whole body shaking when she walked and did beautiful things. Now I realize she probably had ET,” Harrison says.
One of Harrison’s siblings has a tremor, and Harrison has also noticed tremors in his father’s hands. “It was recently decided that I had to suffer a ‘double whammy’, inheriting an essential tremor from both sides of my family.”
Myths and misinterpretations
Essential tremor is often confused with Parkinson’s disease, but they are 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 engages in an activity such as trying to use their hands. The tremor in Parkinson’s disease is a “resting tremor”, which appears when the hands are quiet and disappears when the person uses their hands. Also, unlike Parkinson’s disease, essential tremor does not usually cause a hunched posture, slow movement, rigidity, or a shuffling gait.
Patients with ET are “often seen as frail and nervous, which is far from the case,” Shill says. “Just because a person is shaking doesn’t mean they’re nervous or weak, although stress can make symptoms worse.”
A person with ET may be “reluctant to stand and speak in front of people, eat at a buffet, or eat in a restaurant,” which are situations that highlight the tremor. “In that sense, ET can be a very socially disabling condition,” says Shill.
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 tremors are often mistakenly perceived to be under the influence of alcohol or drugs, even by medical professionals, because of their shaking. A woman with ET told Harrison she had gone to the hospital for treatment and a doctor stopped her at the door and said, “Come back when you’re sober.”
TE treatments and management approaches
A number of medications are currently available for essential tremor, Shill says. The cornerstones of drug therapy are primidone (an anti-epileptic drug) and propranolol (a drug usually used to treat high blood pressure), which reduce tremors in about 40% to 50% of patients. “However, not everyone responds to it, which can be very frustrating.”
Deep brain stimulation is a surgical approach “particularly useful for people with fairly advanced tremors who have tried a number of medications over the years,” says Shill.
It delivers electrical stimulation that regulates abnormal signals via electrodes implanted in the thalamus, a deep brain structure that coordinates and controls muscle activity. Brain stimulation can reduce tremors, especially in the hands and legs, and has a high rate of success in improving the quality of life for people with TE.
Focused ultrasound is a non-invasive technology that focuses multiple beams of ultrasound energy in a targeted manner on deep brain structures, particularly the thalamus, without damaging surrounding normal tissue.
“No incisions are needed in the scalp and skull, although the ultrasound burns a small hole in the thalamus to disrupt the tremors,” Shill says.
Gutermuth said the drugs he tried were “kind of useless”. Focused ultrasound had been recommended but was not then covered by insurance. (Since then, focused ultrasound for ET has been covered by Medicare, and other insurance companies are following suit.) Instead, he tried deep brain stimulation, 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 (such as weighted utensils, writing instruments and cups, a computer mouse that compensates for tremors, and voice recognition programs that can reduce need to type and write) to perform daily tasks. more manageable activities, artificial devices like splints and splints to help stabilize the arm, and deep breathing to help with relaxation.
There are pacemaker-type therapies that don’t require surgery that might be helpful, Shill says. For example, a non-invasive pacemaker 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 control their breathing, such as yoga, meditation, biofeedback, and neurofeedback, can also be helpful.
When Harrison’s son was young, she volunteered to read to the children in his class and her hands were shaking so much she could barely hold the book. “The children laughed at me. I ended up walking out in tears. I knew I could never volunteer like this again, and it broke my heart because I’ve always been a mom who wants to be there for anything my kids do. I started hiding.
The COVID-19 lockdown “made it a lot easier because I was able to live my whole life at home,” says Harrison.
But when she turned 50, she got engaged, and anticipating her friends and family’s reaction to her shaking at the wedding, she began posting videos on Facebook to prepare them. “The videos went 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?’ It’s called “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 keep your sense of humor,” he advises. “You might spill things all over the place, but if you can laugh it makes other people feel comfortable laughing with you.”
Ask for help
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 medical professionals about this condition. “If I see someone shaking, I try to educate them and tell them that there is help for that condition, whether it’s medical or surgical,” says Gutermuth.