If you have essential tremor (ET) and you were asked today which part of your life is hit the worst, what would you say? Would it be your physical abilities? Your relationships? Your self esteem? Your professional life? Other?
ET is the most common movement disorder and much scientific research is devoted to studying it. Most of it focuses on what causes ET, and the effects of treatments (both established and experimental). Yet, for a person with ET, the physical causes and treatment effects are not what occupies their thoughts or triggers their feelings. It’s the impact on their quality of life (QOL) that demands their attention. The irony is, there are far fewer studies on how ET affects QOL than on causes or treatments.
A study on factors that impact QOL
I found a very well thought out study in the journal Parkinsonism and Related Disorders, titled “Quality of Life and its Determinants in Essential Tremor.”i Though the number of participants was small (30), the study was quite comprehensive. I like the way the authors accomplished the following:
- Used objective measures to evaluate the physical severity of each participant’s tremors (including hand, head, voice, and lower limb)
- Used validated tools to assess the presence of anxiety and depression
- Administered a validated ET-specific questionnaire (self-report) that includes communication, work & finance, hobbies, physical, and psychosocial areas of a person’s life
- Looked for correlation with age, gender, age at tremor onset, duration of tremor (number of years), family history, medication use, and distribution of tremor
Here are some demographics on the study participants:
- Average age was 41
- Average age of tremor onset was 32
- 58% had a family history of ET
- 52% had taken or were currently taking medications
What did the study find?
The researchers found that the greatest tremor-related drop in QOL occurred in the psychosocial area. This covers relationships with others, negative self-feelings, embarrassment, depression, isolation or loneliness, worry about the future, anxiety, difficulty concentrating, or other cognitive problems. The persons in this study were more profoundly troubled by ET in this area. Of course, they also experienced problems with physical activities (dressing, writing, drinking from a glass, fixing small things, etc.), communication (especially those with head and voice tremors had the most complaints about this), and their work. However, on average the psychosocial effects of ET diminished their quality of life above other concerns. Does this seem familiar?
There was no link between ET and participants’ age, gender, age of tremor onset, duration of tremor, family history, medication us and distribution of tremor, implying that it was indeed ET, and not those variables, that lowered QOL. The authors found that medications were not a factor either, since scores were comparable whether a participant was or was not on medication. However, there was a significant correlation between severity of tremor and low QOL: the worse the tremors, the worse report on QOL. The authors concluded, “…our study demonstrates that quality of life is impaired even in a younger cohort of patients with ET and that the psychosocial domain is the most affected.”
The authors point to study limitations that include small sample size, participants drawn from patients being seen at an outpatient medical/hospital setting rather than a normal community setting, and cultural characteristics (the study was done in India, and a very small number of participants were poor and illiterate).
To my mind, cultural characteristics are less a limitation than proof that ET is the great equalizer. It doesn’t matter where on the globe you live or how privileged (or not) your circumstances. It seems there is a common element among all those with ET in terms of how it bears on your self-image, your social relationships, and even your mental function. For me, the great value of this study is how it affirms the power of uncontrollable tremors to affect quality of life in ways that non-tremor individuals can’t imagine—but are all too real for those with “the shakes.” I hope that more studies like this will be done in order to help everyone understand the challenges of personal life with ET.
i Chandran V, Pal PK. Quality of life and its determinants in essential tremor. Parkinsonism Relat Disord. 2013 Jan;19(1):62-5.