Lacking a Michael J. Fox, Essential Tremor Advocates Tell Their Story

Women pose for photo

Essential Tremor Support Group leaders Norma Doherty, left, and Arelene Rosen.

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 Gardner Neuroscience Institute.

Arlene Rosen of Cincinnati and Norma Doherty of Centerville, Ohio, have offered to share their stories in honor of Essential Tremor Awareness Month so that we can all become more knowledgeable about this common and disruptive disease. The two women, who co-chair a support group in Miamisburg, Ohio, have had two very different experiences with essential tremor.

Ms. Rosen’s tremor is problematic but not debilitating, while Ms. Doherty’s tremor was so severe that it forced her into retirement. Ms. Rosen is treated with medication and has enrolled in clinical trials that test new therapies at the National Institutes of Health (NIH) in Bethesda, Md. Ms. Doherty has experienced significant relief from deep brain stimulation surgery, a treatment that is also offered to some individuals with Parkinson’s disease.

Perhaps nowhere is the condition more frustrating than at mealtime, a happy occasion most of us enjoy with family and friends.

“My hands shake when I’m eating, when I’m balancing something on a spoon or fork and I’m not able to stab it sufficiently hard to get it to my mouth,” Ms. Rosen says. “Holding a sandwich can be difficult. Drinking is difficult unless I use a straw. Because alcohol is the only thing that helps tremor, if we go out with friends, I have a drink before I go out. An hour later it peaks, and I’m pretty good.”

Ms. Doherty had even worse mealtime experiences before her surgery, 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 use a fork now – but I didn’t use a fork for a long time. 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.”

Ms. Rosen, who describes her tremor as “a major annoyance that can be dealt with and lived with,” first developed symptoms while in her early 50s. It was a familial condition experienced by her grandmother and her siblings, by her mother her siblings, and now by Ms. Rosen and her siblings. A few years ago, Ms. Rosen began seeking out clinical trials, and she recently participated in a study of octanoic acid, a food additive the NIH says is “similar to alcohol, can improve tremor in animals and is less likely to make people feel drunk.” Ms. Rosen said she was accepted into the phase 1 and phase 2 clinical studies because alcohol relieves her tremor. “We only had the medication for one or two days,” she says. “The first octanoic acid study was a double blind study, and I’m pretty sure I got the placebo. In the phase 2 study everyone got the medication. There was a noticeable difference in my tremor. It lasted longer than the alcohol effect lasts. Hopefully, we can continue with this study.”

For Ms. Doherty, the road to achieving peace with her tremor was more 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.

Ms. Doherty 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 in the support group meetings: 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.

“I went through a period of being really depressed, 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.”

About three years ago, her tremor becoming progressively worse, Ms. Doherty 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. Ms. Doherty’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.”

Now under the care of George Mandybur, MD, a neurosurgeon with the Gardner Center and Mayfield Clinic, Ms. Doherty recently had her stimulator battery replaced. “After two and a half years, it ran out of juice,” she said. “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, Ms. Doherty has bravely shown members of her support group what happens when she turns the stimulator off, allowing her hands “to fly like crazy.” She says most people in her support group 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.”

Ms. Rosen and Ms. Doherty welcome people with essential tremor and their families to their support group. And they encourage 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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