By R.M. SMITH
The Parkinson's Institute of Sunnyvale is giving new hope to individuals diagnosed with essential tremor, the neurological disorder that researchers say causes actress Katharine Hepburn and millions of others to shake while in motion.
Nearly 200 people gathered at the Community Center on Saturday to learn about the institute's research and to participate in what organizers heralded as the first support group for essential tremor patients in Northern California.
The research effort, led by Dr. James Tetrud, in part seeks to isolate the gene or genes responsible for essential tremor.
"There are clearly a number of families where there's a gene involved," said Tetrud, a neurologist and medical director at the institute. "And only one of the parents needs to have that gene for the offspring to develop it."
Although some researchers thought tremor could be linked to the gene that causes dystonia, Tetrud said that theory "didn't pan out . . . [so] we're pretty much starting from scratch."
In addition to genetic research, Tetrud and Dr. Laszlo Tamas will continue the institute's efforts to refine a neurosurgical treatment for the disorder called thalamotomy. During the operation, a surgeon inserts a probe in the thalamus (a region of the brain) to locate cells with electronic discharges that match the tremor.
"[The surgeon] makes a lesion that can extinguish the tremor," Tetrud said.
Tetrud and Laszlo also will experiment with other procedures, such as "deep brain stimulation," in their search for better methods of treating essential tremor.
Surgery is usually performed only after attempts to treat tremor with two major drugs, Inderal (a beta blocker) and Mysoline (a barbiturate-like, anti-convulsion drug), he said.
To help diagnose and monitor essential tremor, Tetrud invented an electronic device that measures the amount of tremor in an individual's hand. The device is based on a computer chip originally developed to measure pitch and yaw in spacecraft.
According to Tetrud, about 2 million people nationwide have essential tremor. The mean age of onset is late 30s, he said, and the risk of tremor developing increases with age. Some people develop symptoms of the disorder as teenagers.
Unlike Parkinson's disease, which usually affects a body or limb at rest, essential tremor occurs during motion. For example, a person's arm will tremble while holding a cup of coffee. Because tremor symptoms range from a general feeling of nervousness to severe shaking while performing daily activities, some people fail to recognize the symptoms or attribute them to aging, Tetrud said.
Rose Kleiner, 70, said she has suffered from the disorder for at least 30 years, but waited until two years ago to seek treatment.
"It was disrupting my daily life. I had difficulty eating and difficulty writing. Those were the two most debilitating things," said Kleiner, a Los Altos resident who now sees a physician at the Parkinson's Institute.
Kleiner played a key role in starting the new Sunnyvale support group. She believes the group will bring relief to essential tremor patients like herself.
"First of all, it helps by sharing recipes or modes of living and sharing how to use your hands so that the tremor would be minimal or not as debilitating as it sometimes is," said Kleiner, a clinical social worker who owns an older adult care center in Palo Alto.
"It also helps to know that other people have it, too. It's unpleasant, and you don't want to expose yourself to the public or present yourself that way," she said.
Carol Marchi, outreach coordinator for the institute, said she expects the Sunnyvale support group will draw 25 to 30 people. The institute will help to establish similar groups throughout the region based on interest and need, she said. These local groups generally will meet on a monthly basis, then converge semi-annually in larger groups, such as Saturday's event.
"What I suspect is that they are people of varying ages. Some of them will have had tremor for a short time, some for most of their lives. Probably most will have common problems," Marchi said.
Marchi said the next group meeting probably will take place within the next six weeks at the Parkinson's Institute, 1170 Morse Ave. For more information, contact Marchi at 734-2800, ext. 644.
This article appeared in the Sunnyvale Sun, January 31, 1996
©1996 Metro Publishing, Inc. All rights reserved.