Essential tremor (ET) is often incorrectly diagnosed as Parkinson’s disease (PD). ET used to be called “benign essential tremor” as if it were a fairly harmless condition in comparison with something as feared as PD. However, we now know that that ET is anything but benign. While it is considered non-life threatening, it can obliterate quality of life as it progresses to the point of severe impairment.
Both ET and PD cause a range of tremors. In both conditions, locations commonly include hands, head and voice; other body parts such as legs and feet can be affected, and some people experience internal tremors that are not visible to others. Although ET is far more prevalent than PD, the progression of PD leads to dramatic disabilities that include rigidity, balance problems, swallowing difficulties, depression, anxiety and cognitive decline. While the long-term prospects for people with PD seem very dark, it may be that daily life with ET brings different but equally daunting challenges as living with PD in its early-to-mid stages.
ET vs PD: the patient perspective
Dr. Elan Louis is a Professor of Neurology and Epidemiology at Yale University School of Medicine. He is considered an expert on ET due to his research and publications on this movement disorder. He realized that there was a hole in the published literature on both ET and PD since there were no articles on what tremors are like from the patient’s perspective.
In order to compare the patient experience with ET vs PD tremors, Dr. Louis designed a study to explore this topic.i Besides comparing which condition created more time with tremors during the day, he also wanted to know if certain clinical characteristics were more associated with having more tremors during the day. He enrolled 121 people with ET and 100 with PD (total = 221 participants). Participants were evaluated using a series of standardized questionnaires and a detailed neurological exam. There were also asked, “On a typical day, how many waking hours do you have tremor in any body part?”
ET tremors: more frequent and prolonged
When all responses were collected and analyzed, it was clear that those with ET reported “more than three times the median number of waking hours experiencing tremor than Parkinson’s disease cases…A small number of cases (esp., essential tremor) reported spending ?16 hours/day shaking.” This tells us that throughout an average day, people with ET have more frequent and likely more prolonged bouts of uncontrollable shaking.
In addition, Dr. Louis reports that for both ET and PD, more women than men reported longer tremor hours; also, higher depression scores and perceived disability scores were linked with longer tremor hours. Those with ET also had higher Essential Tremor Embarrassment Assessment scores.
While it’s ultimately impossible to compare one person’s experience with another, we know that both ET and PD pose great hardships on patients and their loved ones. A study like Dr. Louis’ reminds us that those of us who don’t have either condition can have very little idea of what it’s like to live with tremors, whether for short periods during the day, or for the majority of one’s waking hours.
New hope for controlling tremors without medication
Thankfully, the recent addition of MR-guided Focused Ultrasound (MRgFUS) to the available neurosurgical treatments for tremors offers the ability to restore quality of life by controlling tremors in the dominant hand. MRgFUS is an incisionless procedure that corrects tremors by focusing ultrasound on the part of the brain that forwards abnormal signals to the hand. It is a patient-friendly, outpatient treatment that is immediately effective and has few-to-no temporary side effects. In fact, the FDA has now approved the same procedure for patients with tremor-dominant PD. It’s now possible to free up all those hours each day that were spent coping with “the shakes” for other more important and pleasant life activities.
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iLouis ED. More Time with Tremor: The Experience of Essential Tremor Versus Parkinson’s Disease Patients. Mov Disord Clin Pract. 2016 Jan-Feb;3(1):36-42. Epub 2015 Jul 14.