Imagine the embarrassment of not being able to eat a bowl of soup at your neighbor’s, write a check at the store or hold a glass of punch during a friend’s wedding reception, all because your hands are shaking violently.
This is what Dwight Rieman, a retired associate professor of social work for MU, experienced before he realized he had a problem that affects up to 10 million Americans today. Rieman was diagnosed with Essential Tremor, or ET, which is the most common form of tremor. It is the rhythmic shaking of a body part that commonly causes embarrassment and frustration and can lead to disablement.
Catherine Rice, the executive director of the International Essential Tremor Foundation, said that most of the time people suffering from ET are not aware of their condition.
“They think that they are just nervous or it’s just a slight tremor and there is no need to worry,” Rice said. “A lot of people do not realize that it is genetic and they need to seek help.”
A common problem with ET is that it is often misdiagnosed as Parkinson’s disease, which affects as many as 1.5 million Americans. In patients with Parkinson’s, the tremor is most prominent when the patient is inactive. ET patients experience the tremor most often while their hands are outstretched.
With Rieman’s condition becoming increasingly embarrassing, he knew he had to do something about it. He went to see his doctor, who was baffled by his condition. The doctor told Rieman to drink less coffee. After Rieman cut back on caffeine and showed no sign of improvement, his doctor went back to the drawing board.
The doctor ruled out Parkinson’s disease but still didn’t know what to do. “He said he had one medicine for me to try,” Rieman said.
Rieman’s doctor prescribed the drug propranolol. The medication has kept him “shake-free” for more than 20 years.
“The effect was absolutely miraculous — within three days my tremor was gone, and I have never had it again,” Rieman said. “Unfortunately, there are people not as lucky as myself.”
A variety of medications, including propranolol, primidone and gabapentin, have been used to treat patients with ET.
“Many medications are offered, but the problem is that none of them have been developed for Essential Tremor. They are secondary medications that may treat the tremor but are for other conditions, like high blood pressure and epilepsy,” he said.
Only 60 percent of ET patients are helped by these medications. Luckily for Rieman, he falls into that percentile.
A more extreme form of treatment is deep brain stimulation surgery, where neurosurgeons are able to block signals in the brain and stop them with electrical stimulation, decreasing or diminishing the tremor.
“One is referred to a neurosurgeon only if a person’s quality of life is compromised,” Rice said.
Michael Oh, assistant professor and director of stereotactic functional neurosurgery, came to MU Health Care a few years ago to help start the surgical program in Columbia. Since he arrived, the program has completed more than 100 deep brain stimulation surgeries.
The average age of onset for ET is 45 years, but a person could have it his or her entire life and never be aware of it. The tremor normally gets worse with age, but it can also affect children.
“It is becoming more prominent with children,” Rice said. “It has been a problem letting schools know about the condition. Teachers just think the child is nervous, and then the teacher will ask the child ‘why are you nervous?’ That just puts more pressure on the child and the tremor gets worse.”
Rice said that people do not understand that ET can become serious and that some people are left totally disabled.
“We need to identify and increase awareness before we can get funding for research,” Rice said.
The International Essential Tremor Foundation hopes to raise more funding to find a cure for ET. It is also looking for a volunteer in the Boone County area to establish a support group in Columbia.
These days, Rieman keeps busy by playing with his twin 4-year-old grandchildren, writing, playing the piano and traveling to watch his children perform in musical recitals.
“I probably wouldn’t have been able to drive because it would have gotten worse,” Rieman said. “Now I’ve been able to do a lot of things I’ve wanted to for years.”