The Invisible Needs of Essential Tremor

What’s the first thing a person’s primary care doctor or neurologist looks for to diagnose essential tremor (ET)? It’s something visible such as the tell-tale uncontrollable shakiness of a hand, head, voice or other body part. To distinguish it from other tremors such as those associated with Parkinson’s disease, the doctor asks for more visible evidence. He or she will have the individual perform at least one task, such as reaching for a glass of water and taking a sip, drawing a spiral, or holding arms outstretched in front.

The doctor will also ask questions about family history, when did tremors first become noticeable, things that make them worse, etc. Whatever the answer, the physician will take the person’s word for it.

These are things that doctors are trained to do: Observe the symptoms and ask about the patient’s experience. With regard to ET, diagnosis is fairly straightforward because the need to bring the tremor under control is visible. The patient can’t do it alone.

Other needs are not so visible

While physical tremors create visible problems such as difficulty grooming oneself, getting dressed, eating, writing or typing, “the shakes” also create problems that are not easy to physically identify. These include emotional, social, and cognitive problems that start early on and can grow worse as tremors progress.
Doctors who came through medical school had to work and study very hard to master enormous amounts of content, and skills like performing surgery or reading brain scans. While it’s safe to say that medical students are not only intellectually curious but also motivated by humanitarian concerns, it’s possible to lose sight of the human factor when focused on the trying to cure the body. Thus, it may not occur to a doctor diagnosing ET to ask questions like:

  • Do you often feel embarrassed?
  • Do you feel like no one understands you?
  • Have you stopped going out with friends as often, or dropped out of social activities that require using your hands?
  • Are you depressed or discouraged, and would you like counseling?

What those with ET say their care lacks

In 2015, a study came out of Yale University on what people with ET observe regarding their quality of care. One of the authors designed a questionnaire in consultation with colleagues and persons who were being seen for ET. The responses were open-ended rather than multiple choice, to allow for the freest expression from each respondent, and they were distributed by email. There were 1418 responders, and while this is a tiny fraction of the estimated 7 million people in the U.S. who live with ET, it still represents a large pool of information that had never before been asked of so many people.

While much of the information had to do with the quality of their treatment and how educated they thought their doctors were, here are some other needs that were expressed when responders were asked what problems they would focus on if they were going to design a comprehensive ET treatment center:

  • psychological services/support (33.9%)
  • physical or occupational therapy (i.e., help with self or personal care or personal hygiene) (28.6%)
  • handling embarrassment and social effects of tremor (15.8%)
  • stigma reduction (7.9%)
  • more individualized treatment (7.4%)
  • anxiety (6.8%)
  • depression (6.3%)
  • support groups (4.9%)

Invisible until asked

A neurologist or other doctor peering at a hand reaching for a glass of water may not initially think about how embarrassed this person must feel, or his/her need to get together with others who share the problem. It may not even occur to the physician that there is a stigma attached to tremors, such as people not getting hired because the Human Resources person perceived them as nervous and unconfident, and therefore not capable.

We physicians must strive to remember that there is a difference between curing and healing. Sometimes we can cure the problem, and sometimes we can’t…but we always have the opportunity to bring more healing to the whole person in terms of meeting the needs that are less visible to us.

This is one of the challenges in dealing with essential tremor. While it is gratifying and satisfying when we are able to meet a person’s physical need—as in stopping the tremors in their dominant hand through noninvasive MRI-guided Focused Ultrasound—we also need to listen to and hear where their mind, heart and spirit are hurting, too.

1 Louis E, Rohl B, Rice C. Defining the treatment gap: what essential tremor patients want that they are not getting. Tremor Journal. Aug. 14, 2015. https://tremorjournal.org/index.php/tremor/article/view/331/html

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