She realized she was different when she went to a birthday party as a young girl and she saw the other children playing with tea sets.
“I can’t do that,” she thought to herself.
She knew her shaking hands would never be able to handle the tiny cups without spilling or breaking something.
“The mother was out sweeping,” she recalls. “I politely made a trip to the porch and volunteered to help her, to get away from it.”
Not until she was in her 60s did this Salisbury woman learned the uncontrollable shaking she’d deal with all her life was a condition with a name ó essential tremor. Now in her 70s, she wants to make more people aware of this often-undiagnosed problem. But after struggling so long to hide or overcome “the shakes,” as some call it, she’d rather not use her name.
She learned to deal with her tremors as she grew up. Living on a farm helped. Her mother and father worked side-by-side, and she stepped in to do the same. Her father never stopped her from tackling new chores or driving the tractor.
Getting and keeping a job after the family left farming was hard, but she figured she would have to fend for herself. She didn’t expect to ever marry; it just wouldn’t work out.
Doctors seemed uneasy talking about her condition, since they didn’t know what to do about it. One prescribed Valium when that drug first came out. It didn’t help. Nor have other drugs that have been developed. And she doesn’t want to resort to drink, as many people with the condition do to fend off the shakes for a while.
But, she says, she’s been lucky. Marriage was not the impossibility she thought it was. She found someone she says was “tolerant enough to deal with it,” and they have been married 39 years. She has a stepchild and grandchildren.
She sought treatment at Duke in 1998, in her 60s, as the shaking worsened. That’s when she learned the facts about essential tremor. Now she wants to help those who have it, inform those who encounter it and perhaps spare future generations by inspiring donations to the International Essential Tremor Foundation. (Its Web address is www.essentialtremor.org. Mailing address: P.O. Box 14005, Lenexa, Kansas 66285-4005.)
She’s concerned that revealing her name might hurt some people, she says. There are nieces and nephews who may have essential tremor, since it’s often hereditary. There are the people who have worked with her through the years without knowing. And there are the people who asked insensitive questions.
“What’s wrong with you, anyway?”
Only two or three teachers reached out to her with compassion and support, she says. High school was horrible. In a small, closeknit community, no other teenager had the shakes.
She was different.
Many people mistake essential tremor for Parkinson’s disease, since both involve uncontrollable movements. Though both stem from the central nervous system, there’s a key difference. With Parkinson’s, the tremor takes place when the limbs are at rest. With essential tremor, it happens during an action of the affected limb ó for example, while reaching for something.
“Most commonly, ET affects one or more upper extremities. It can also affect the neck muscles (resulting in head tremor) or the muscles of the larynx involved in generating speech. Less commonly, tremors in this disorder affect the legs, the chin region or all locations simultaneously.”
That’s from a book she discovered not too long ago and has given away to many people, “I Can’t Stop Shaking: More Than 10 Million People Suffer With Essential Tremor,” by Sandy Kamen Wisniewski.
“It did me a lot of good to read that book,” she says. She can identify with every person in it.
Wisniewski was diagnosed with essential tremor when she was 14, after years of tucking her hands in her pockets to hide the shaking. The book describes her experience, shares the stories of other people who have essential tremor and gives tips on living with essential tremor, such as:
– Use an electric toothbrush.
– Use credit cards and debit cards instead of writing checks.
– Use eating utensils that have large handles.
– Use a 1-inch deep dish that has vertical sides.
– Hold your drinking glass in the palm of your non-dominant hand and steady it with your dominant hand.
Had the Salisbury woman been born at a later time, she probably would have been declared disabled and received disability checks. But she’s not interested in what she can get now. She wants to give ó give hope to other people with essential tremor.
After her death, she wants her brain to go to researchers. For now, she wants any person who’s hiding the shakes to know ó you’re not alone.
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Elizabeth G. Cook is editor of the Salisbury Post.