There are millions of people with essential tremor (ET), the most common movement disorder. It is easy to be unhappy with ET. It may start at any age with hard-to-conceal shaking of the hands, head or other body part. It may not be very pronounced at the beginning but it is still embarrassing, inconvenient, and annoying—a source of low-grade stress. For most of us, chronic stress gets in the way of feeling happy.
Then, as tremors progress to the point of interfering with daily tasks, so does the struggle of living with them. Unhappiness increases.
Unhappiness with medical care
As if there weren’t enough stress, the one place people go in hopes of controlling tremors—the doctor—can actually add to frustration. In 2015, a multi-institution study revealed that fewer than 12% of people with ET were satisfied with the clinical care they were receiving from their doctors.i The study authors are out of Yale University’s School of Medicine, and the lead author, Dr. Elan Louis, is considered a leading authority on ET.
The authors gathered data from over 1400 voluntary participants via an online questionnaire. A link to the questionnaire was distributed through the newsletter of the International Essential Tremor Foundation (IETF), and participants completed the survey online. The list of areas in which they were dissatisfied seems to cover nearly every aspect of living with ET. Here are the issues they felt were not being addressed by their current doctors or medical teams:
- Psychological services and support (33.9%)
- Physical or occupational therapy (28.6%)
- Dealing with embarrassment and the social effects of tremor (15.8%)
- Feelings of lack of control (13.7%)
- A more quantitative way of measuring tremor and tracking progression, with more detail (12.7%)
- Better counseling about current treatment and medications (11.9%)
- Empathy, compassion, and a feeling of being heard (11.6%)
- A treatment approach other than medications and surgery (11.2%)
- Discussion of all symptoms aside from tremor (e.g., cognition, balance)
The point is, doctors may be focusing on physical aspects of ET that may not trouble patients as much as the items on the list above. For instance, simply doing a draw-a-spiral test and giving a prescription for propranolol without saying more than, “Try it for four weeks and let me know how it’s going,” misses the patient’s needs for more connection, education, and empathy. The patient may be wondering, What about alternative medicine? Can we talk about CBD oil?
A long, complicated journey
The standard of care when a person is diagnosed with ET involves pharmaceuticals, most often primidone or propranolol. Drugs are effective for about 50% of persons with ET, but the effectiveness of medications tends to lessen as tremors progress. This means trying different doses or combinations of drugs, and living with medication side effects. Meanwhile, the person may turn to physical therapy, assistive devices, help at home, Botox injections, etc. The journey seems to drag on and on. For those persons whose ET is not helped at all by medication, their road likewise leads to trying the same resources.
The essential need, of course, is to have a life without tremors—to end the embarrassment, isolation, frustration, anger and more that accompanies ET.
To control tremors without drugs and avoid invasive surgery or radiation, Sperling Neurosurgery Associates offers a treatment called Neuravive. This FDA-approved treatment is an outpatient procedure that harnesses the power of MRI-guided Focused Ultrasound (MRgFUS) to noninvasively correct tremors by stopping abnormal brain messages from reaching the hand. Our expert staff recognizes how physical tremors ripple throughout every aspect of a person’s emotional, social and psychological existence. The most elegant solution is to get off drugs and still stop the tremors. Our patients are very happy that they found us. Visit our website for more information.
iLouis ED, Rohl B, Rice C. Defining the treatment gap: what essential tremor patients want that they are not getting. Tremor Other Hyperkinet Mov (NY). 2015:5:331.