Essential Tremor - Facing And (Maybe) Ending A Lifetime Of Frustration [Robert Kelly]

The Beginning

“Look at his hands shake,“ the little girl said as she watched me scratch my initials on my sun-browned arms with the point of a pen.  That was my first encounter with essential tremor (ET). I thought I had erased her comment from my mind. But here I am, decades later, recounting the incident.  This serves as a reminder that the scars accompanying ET dig deeply into the psyche.

 Everybody with a hand tremor is not by definition a victim of ET.  Some  old people shake simply because of age.  Nervous people shake.  But those with ET shake because they were born with a genetic defect.  Old or young, nervous or cool, they will at some time in their life develop, at least, a hand tremor.  Sometimes the head and legs are also involved.    

 The Middle Period

 ET gets worse with time.  It isn’t too noticeable to others at first partly because those with ET become clever about how they expose their hands in sensitive social situations.  But  they are always keenly aware that their hands are out of  control and, worst of all  -- due to the lack of publicity aboutET -- they blame themselves for shaking, especially in pressurized situations.  This is a blow to the psyche.  I can’t take the heat, they think.  I’m too nervous to do this or that, so I  won’t try.  Or worst of all: There’s something wrong with me.

 These destructive thoughts are pushed away by some as they bluff, hide and bully their way through the headwinds that get stronger every year.  But others with ET were not so bold.  And one is forced to wonder how many of them, because of embarrassment, gave in and lost the joys of accomplishment that might have been theirs had they tried harder.   

 I refused to let my affliction curtail my interests.  Instead, I challenged the shakes.  I took up pool and billiards in high school, along with my usual baseball and singing activities, which forced me to expose and use my hands and my body in a public way; it forced me to confront the condition and to deal with it – it forced me to live an almost normal life.

 This attitude got me through high school and three years in the Navy without serious  mishaps.  I still knew nothing about ET and I believed that I was essentially at fault for my tremors.  My mother and my brother, similarly afflicted, were equally ignorant.  “Just a family trait,” our elders said.  And doctors were no more helpful.    

The pool table, the baseball field and school exams gave me the first indications that ET could become a serious problem for me.  My stroke with the pool cue became erratic --  – I missed easy shots.  Same thing with a baseball – my throws became undependable.    More importantly, when I took my tests in college, I lost time because I had to warm up before I could write – a potentially devastating handicap. 

The situation continued to deteriorate when I went to work.  As a businessman, pen and pencil were omnipresent; my untrustworthy hands were challenged every minute of every day – and tremors in other parts of my body were appearing.  My professional career was in jeopardy.  Something had to change.

And it did – just in time.

I was in my 30s when a cardiologist in Mass General reported to a neurologist colleague that some of his heart patients who used Inderal reported a surprising decrease in their hand tremors.  The neurologist followed up on this tip by recruiting a class of volunteers who had the shakes.  He rejected all candidates except those who came from families with a long history of tremors.  I was one of those selected, and the tests began.   I was introduced to Inderal, a medicine that could help me. 

The shakes in my head, body and legs were almost eliminated by Inderal; my hands became more functional.  Of equal importance, I learned I had a genetic condition that had a name – essential tremor.  The shakes were not my fault.  A flood of doubts that I had suppressed about myself gushed from the recesses of my mind.  For the first time I had hope; I could stop hiding an embarrassing condition.  I had a tool to work with.

Increased doses of Inderal were added over the years, plus another medicine, Primidone.  Together they have made a relatively full life available to me.  I can’t do everything I’d like to do; I don’t do some things as well as I could without ET.  But I survived until …. Inderal and Primidone no longer worked.  Something new had to be found.  I’ll explain what I did in the next column.

CapeCodToday.com welcomes thoughtful comments and the varied opinions of our readers. We are in no way obligated to post or allow comments that our moderators deem inappropriate. We reserve the right to delete comments we perceive as profane, vulgar, threatening, offensive, racially-biased, homophobic, slanderous, hateful or just plain rude. Commenters may not attack or insult other commenters, readers or writers. Commenters who persist in posting inappropriate comments will be banned from commenting on CapeCodToday.com.