Question: what progressive neurological condition causes a rhythmic trembling of the head, voice, legs or trunk; can be treated with medication or deep brain stimulation; has no definitive cure; and is eight times more common than Parkinson’s disease? If you’re stumped, you’re not alone. The condition just described is essential tremor.
Essential tremor, which is also known as familial tremor, benign essential tremor or hereditary tremor, affects some 10 million Americans. It is a movement disorder and is frequently treated at the James J. and Joan A. Gardner Family Center for Parkinson’s Disease and Movement Disorders at the UC Neuroscience Institute.
Norma, of Centerville, Ohio, shares her story so that we can all become more knowledgeable about this common and disruptive disease.
For Norma, the road to achieving peace with her tremor was fraught. The relentless tremor shook her hands and her neck, causing her to sleep fitfully, and she reached a point where she could no longer read her own writing. Although her company tried to adjust her workplace to her needs, she decided “to hang it up” at age 69.
Norma thought her condition might improve without the added stress of working, but it didn’t. “It seemed like every medication I took either made me sleepy or made me sick at my stomach,” she says.“I took several different kinds, and it was very annoying when you’re spending all that money for medicine and then you feel worse after you take it than you should. One thing I try to stress to others: if you’re starting something new, ask your pharmacist if you can take part of a prescription to see if it’s going to work. You will save your money that way.
Perhaps nowhere was the condition more frustrating than at mealtime, a happy occasion most of us enjoy with family and friends. Norma struggled to eat because her hands would fly about uncontrollably. “I almost could not eat, except with my fingers,” she says. “In support groups I would joke that essential tremor is not going to kill you unless you starve to death from not being able to keep the food on a fork or spoon.
“I went through a period of being really depressed,” she says, “and I didn’t want to go out because of the tremor. And even though I had support from my family and several friends who didn’t mind going out to eat with me, it was still troubling to me.”
Several years ago, her tremor becoming progressively worse, Norma was asked to consider deep brain stimulation surgery (DBS). As with DBS for Parkinson’s disease, electrodes implanted in the brain (and attached to a battery pack implanted under the skin) can override signals that cause tremors. Norma’s neurosurgeon, who has since moved to another area, told her to discuss the potential benefits of DBS and the risks of brain surgery with her family. “During my drive home, the wheels are turning and I’m thinking, why do I have to talk it over with my family?” Ms. Doherty says. “I want to stop the tremors. By the time I got home, I had decided to go through with it. I called and said, ‘Schedule the surgery, I’m going to do it.’ After I decided, I told all five of my children that I was going to do it.”
The surgery was transformative. Her tremor stilled, and for the first time in a long time she was able to use a fork. “I have a friend I go to dinner with after support group, and she always says it’s so much fun to watch you eat salad. I do really enjoy it because I wasn’t able to eat it before surgery.”
Now under the care of George Mandybur, MD, a neurosurgeon with the Gardner Center, Norma recently had her stimulator battery replaced. “After two and a half years, it ran out of juice,” she says. “Dr. Mandybur put the new one in and said he’d see me in nine years. The new battery is rechargeable. I sit and charge it for 20 minutes while watching TV each night and I’m good to go.”
Ever the advocate, Norma has bravely shown others with essential tremor what happens when she turns the stimulator off, allowing her hands “to fly like crazy.” She says most people are fearful of brain surgery, but in her case, “I felt that my quality of life was becoming very poor, and I wanted more.” Her son, she adds, is happy “that I don’t have my sippy cup with me all the time.”
Norma encourages others with essential tremor to spread the word. “We don’t have a Michael J. Fox to champion our cause,” Ms. Rosen says. “If we had Katharine Hepburn here today, maybe she could help us out.”
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Hope Story Disclaimer – This story describes an individual patient’s experience. Because every person is unique, individual patients may respond to treatment in different ways. Outcomes are influenced by many factors and may vary from patient to patient.