Finding Some Calm After Living With
As Sandy Kamen Wisniewski remembers, her hands always shook. She hid them in long sleeves and pockets and
wrote only in block letters in school because at least that was readable. The tremor became much worse as she
entered her teenage years, and if she was upset or under stress, it grew so bad she cringed with embarrassment and
decided that it must all be psychological.
Ms. Wisniewski, now 40, was 14 when she learned that she had not an emotional disorder, but a neurological
condition called essential tremor — “essential” not because she needed it, but because no underlying factor caused
it. It was not a prelude to disease, nor was it caused by a hormonal problem, a drug reaction or
(Many people thought thathad Parkinson’s disease, when in fact she shook because she had
essential tremor, as does Terry Link, a state senator in Illinois, and Gov. Jim Gibbons of Nevada.)
This disorder, which in most cases is inherited, is so misunderstood and so often misdiagnosed that Ms.
Wisniewski, who lives in Libertyville, Ill., decided to write a book about it. Called “I Can’t Stop Shaking,” the book
was self-published last year through Dog Ear Publishing in Indianapolis. Her intent is to help the estimated 10
million people who suffer with essential tremor, often for decades without knowing what is wrong.
John, for example, whose head shook uncontrollably, spent 27 years “being tested for nearly everything,” as he
relates in the book. He even had an M.R.I. and was told by the doctor that there was nothing wrong with him.
Modern technology helped him learn the truth when he typed “head tremors” into a computer search engine and
found thfor the International Essential Tremor Foundation. His shouts of joy upon recognizing his
disorder woke his wife. He then recalled that his grandmother and all his cousins had what they called “the shakes,”
Only a small minority of patients with essential tremor seek treatment, Ms. Wisniewski’s book says, although there
are several medications that help and, for intractable cases, a surgical procedure that can greatly reduce, if not
For Shari Finsilver, who never even told her parents about the hand tremors that began at age 11, the surgery she
underwent in her 50s, called deep brain stimulation, was “a life-altering experience, like someone awakened from a
As she wrote in Ms. Wisniewski’s book, “I immediately began doing all the things I had not been able to do for 40
years: write by hand, use a camera, cut with scissors, make change at the cash register, sign checks and credit card
receipts, enroll in a public speaking course, dance with men other than my husband and son — all the things most
“But best of all, I was able to walk down the aisle at my children’s weddings, and cradle my grandchildren in my
One thorough study has indicated that in 96 percent of cases, essential tremor is familial, a result of an autosomal
dominant genetic mutation. That means that every child of a person with the condition has a 50 percent chance of
inheriting it. And most people, after learning the nature of their problem, are able to trace it from a parent and
other family members. But the so-called penetrance of the mutated gene can vary widely, resulting in different
The damaged gene interferes with voluntary muscles and can affect any body part, hands most often, but also the
neck, larynx (resulting in a tremulous voice) and, less often, the legs. The tremor disappears at rest and during
sleep, but becomes apparent when a person tries to do something with the affected part and is made worse by
In people with hand tremors, the shaking starts when they try to write or hold a cup of coffee or eat with a utensil.
Many people with essential tremor devise ways to avoid such activities, like eating just sandwiches or never eating
in public, typing instead of writing or paying by credit card to avoid writing a check.
One woman in Ms. Wisniewski’s book was able to return to college when she learned that disability laws entitled
her to a note taker for all her classes. But many employment opportunities are out of reach. Jean Moore worked in a
payroll office until she could no longer read her own numbers. Another woman was fired from her job as a waitress
when she could no longer carry cups of liquid and plates of food without spilling them.
Head tremor is more difficult to disguise. Some people sit with their elbows planted on a firm surface, holding their
While the disorder can show itself at any age, essential tremor usually does not become apparent until midlife and
In diagnosing essential tremor, a doctor must first rule out other causes like medications, drug or alcohol
withdrawal, excessive caffeine intake, overactive thyroid, heavy metal poisoning, fever and anxiety. A doctor also
must check for other neurological conditions like Parkinson’s disease,or dystonia.
A number of drugs have been found, mostly by accident, to relieve tremors. They include beta blockers like
propranolol, marketed as Inderal, used mainly to control high primidone, found in Mysoline; and
topiramate, or Topamax, used mainly to treat
Several other drugs have helped some patients, and sometimes a combination of medications proves helpful.
Dosages are limited by the patient’s ability to tolerate side effects. Injections of botulinum toxin A, in Botox, help
If drug treatment is not helpful, implanting a stimulator in the thalamus of the brain can block the nerve signals
that cause tremors in the upper extremities. The procedure has its hazards and is usually a last resort.
Most people with essential tremor have discovered on their own that alcohol provides temporary relief. But over
time, more and more alcohol is needed to be helpful, so excessive intake and alcoholism are real dangers. This
Members of the essential tremor foundation have provided a host of “survival” tips that Ms. Wisniewski lists in her
¶Using half-full mugs and holding them with all five fingers on the top.
¶Using a travel mug with a lid and straw.
¶Asking the server to deliver your plate with the food already cut in bite-size pieces.
¶Using a bib or fastening the napkin under your chin with a dentist’s chain.
¶Writing with a fat pen that has a rubber grip.
¶At the computer, wearing wrist weights and keeping palms anchored to the front of the keyboard.
¶Using an electric toothbrush and razor.
¶Carrying preprinted labels with your name, address and telephone number.
For further information, including support groups for people with essential tremor and their families, the
foundation has a Web site at and a toll-free telephone number, (888) 387-3667.
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