People who suffer from essential tremor (ET), a non-life threatening but progressive condition, are aware of how others react to them. If their hands shake, they are often wrongly perceived anxious or clumsy. If side-to-side shaking affects their head, it looks like they are saying “no” before the other person has to chance to complete his or her question. If voice tremors make their speech shaky, they may be characterized as nervous or timid. What’s worse, attempts by others to be funny (“Only three cups of coffee and my hands are shaking – looks like I’ve been hanging around you too long!”) can be hurtful. Every ET patient has to figure out for himself or herself how to adapt to potentially embarrassing encounters. For some, it works to take the humor initiative and throw the first punchline.
Stand-up comic Robin Hetroi had ET from childhood, and the comments and jokes of others were often humiliating. Meanwhile, her girlhood heroines were comediennes like Carol Burnett and Gilda Radner, inspiring her desire to make other people laugh. When she began taking an adult comedy class, she anticipated that her stage appearances would have audience members more focused on her shakes than her jokes, so she tried to hide her tremors. Her jokes fell flat. With the encouragement of other comics, she experimented with ET jokes. For example, she often opens her comedy: “For those of you prone to motion sickness please don’t make my microphone your focal point. My hands are about as steady as a caffeine junkie’s.” The laughter is there, putting everyone at ease. Today, she uses her comedy as a way to educate others, and to model for ET patients to boldly live their dreams.
Published author Lori Duffii is not in the public spotlight in the same way as Robin, but she too finds a witty pen to be a mighty weapon when it comes to facing ET head on. In writing about Essential Tremor Awareness Month, Lori quips, “March is, as I’m sure you have absolutely no idea, Essential Tremor Awareness Month. Every disease seems to have some kind of celebration these days, some whole months, some weeks, and some days. Thursday, for example, is, I think, ‘Infected Hangnail Day’ and you should wear something of an angry red color to show solidarity.” As she confronts the progressive nature of ET, she contemplates the day she may undergo implantation of brain electrodes (Deep Brain Stimulation or DBS), noting that the idea of being awake during the procedure in order to monitor the response makes her want to “just hold a flag as a prop and pretend like I’m waving it all the time in a patriotic gesture instead of shaking.” However, she says that since she’s not yet ready for that surgery, “I’ll just sit here quietly shaking, and typing everything because I am past the point where I can read my own handwriting.”
Given how many varied personalities we humans exhibit, it’s clear that pre-emptive humor won’t be every ET patient’s style. Check out the discussion on use of humor at the ET Support Group Blog for a range of opinions and experiences.
MRgFUS for ET
Ms. Duff’s description of DBS surgery mentions that being awake means the likelihood of hearing the tool as it opens her skull. In fact, a 2014 online article in Smithsonian Magazine notes the conversation between the neurosurgeon and a patient who is having a dime-size hole created in his skull. “’Can you hear the drill?’ Foote asks his patient as he presses the stainless steel instrument against bone.”iii While the idea may send shivers down many a spine, DBS has proven incredibly helpful for many patients with ET, Parkinson’s disease, etc. when medication is no longer effective for controlling tremors.
For those who are not comfortable with the idea of implanted electrodes in their brain, the Sperling Medical Group offers a safe and effective alternative. Our noninvasive procedure called MRI-guided Focused Ultrasound (MRgFUS) can deaden the very tiny area in the brain that is not functioning properly. This outpatient procedure is immediately effective in greatly reducing hand tremor in the dominant hand. Although it is not guaranteed effective for all patients, the majority experience durable relief and enhanced quality of life.
If ET reaches a point at which it is decidedly no laughing matter because of how it disrupts quality of life, contact the Sperling Medical Group for more information about MRgFUS.