By George W. Paulson, M.D.
Few people have written about whether or not ET is actually “benign.” As you know, ET has carried that adjective for years, but is a tremor truly benign when one ceases to go to restaurants because of embarrassment? Is it benign when you have to explain to colleagues at an exciting board meeting why suddenly your hands are shaking? Is it benign when a proud young man is considered “nervous” because his hand or voice quivers? For some it would not even be considered benign when you have to avoid long earrings, can’t wear feathers in your hat, and dare not write in public. It can be distressing to have to fill out a form in public, or even sign your name, as others watch.
Most movement disorders are readily apparent to even the most casual observer. In addition, many patients feel a sense of trembling inside, particularly when the tremor is due to parkinsonism rather than ET, even though the tremor is not apparent to others. ET can affect the head, hands or voice; and the effects can be beyond simple self-consciousness or social embarrassment.
I remember the captain of the football team at the high school, who has now become a successful physician. He was failing draftsmanship in his senior year. When his mother said he was too “nervous,” his eyes flashed with anger as he said, “I told you Mother, I’m not nervous; it’s just that my hands shake.” When her own fingers were extended she could see tremor, but she never considered that to be linked to his “handicap,” or his poor performance in class.
ET is an action tremor, and therefore the physical disability from ET can involve handwriting or drawing. What of the cartoonist or the surgeon who really depends on his hands for delicate work? Surely to fail in your vocation because of ET is more than just embarrassing. There are settings in which public eating is mandatory. Some must avoid soups or must hold a coffee cup with both hands, and food spills sloppily from a fork. Since our ears are much attuned to pick up anxiety, anger or dishonesty in a voice, a quivering voice can be interpreted as anxiety.
For all these reasons ET patients may tend to view themselves as more disabled than is true for those with other conditions, perhaps because the problem rarely disappears. It may be difficult for some to overcome this sense of disability. Most neurologists would prefer individuals to have ET than to have PD, simply because ET is not associated with slowing down and does not shorten life or affect cognition.
In our culture, appearance and conformity are considered necessary. Deviation from the “norm” can result in unwanted attention, and the attention can make individuals feel anxious. Since tension and stress exacerbate ET, there may actually be more tremors in the presence of others. Although patients with other movement disorders, even very severe ones such as Huntington’s disease, develop techniques to disguise the movements, it is not easy for ET patients to disguise their shaking. For some, the harder they try the worse it becomes.
Can physical therapy help with the physical limitations of ET? Most of us would say “probably not,” but the optimism of therapists and their universal commitment to maximize potentials can be helpful. The patient’s ability, by force of will, to transiently overcome shaking or to calm the anxiety that increases the shaking can lead to self-improvement.
Emotional therapy (from a neuropsychologist) may be valuable for some because they learn to adjust to the tremor. Support groups can also help. They can offer opportunities to discuss common experiences and to learn tricks one can use to avoid being conspicuous. One of their best features is a reconfirmation that ET is indeed a real disorder, a disorder that has treatment, even though there is no ideal treatment.
One thing that the support groups, physicians, friends and indeed the patients themselves can do is to absolutely continue to remain active in society, to educate and, through self-help, to help others.