Wednesday, November 06, 2013

Nothing To Worry About

As I left a meeting of the Durham Appearance Advocacy Group last month, one of the presenters walked out with me.  He had noticed a tremor in my hands and wondered if it might be Parkinson’s.

I don’t have Parkinson’s, but he did and I hadn’t noticed.  You tend not to notice movement disorders in others when you have one yourself.  Mine is called an Essential Tremor.

Since I was the age of my grandsons now, I’ve had a benign, involuntary tremor, which manifested first in the right hand and soon after in the left.   It has gradually worsened or amplified over the years.

My daughter has this too, as does one of her cousins.  I’m not sure about my grandsons, but about 50% inherit the condition which overall is eight times more common than its much more serious cousin, Parkinson’s.

Still, ET affects an estimated 10 million people in the U.S. or 1 in every 31 Americans.  Some, like me, get it in their youth; about 4%-6% get it only as they get much older.  Most get it in middle age.  It has even been diagnosed in infants.

It shows up when I am eating or drinking, pointing or writing, shaving or brushing my teeth, or using a screw driver or doing anything really that requires dexterity.  For those of us who manifested ET at a young age, the tremors and other involuntary movements become more exaggerated as we age.

Business receptions became an adventure two or more decades ago when I was in my 40s.  I would be standing in a group talking with a beverage in my hand and unpredictably, my hands would suddenly tremor violently or reflex, tossing my drink over on the person next to me or on myself.

The condition is unrelated to nervousness, but it does amplify under emotional stress.  The field from which I retired several years ago is incredibly stressful, especially with the intensity with which I practiced it.

The disorder may have played a small role in the 30% savings goal I set in my 30s, calibrated so I might retire whenever the involuntary movements reached a certain level.

Over the years and behind my back, someone who had a problem with me over some issue or another would occasionally make the tremor a source of ridicule.

I walked up behind a nemesis on a controversial issue while he was talking to some officials many years ago only to realize he was mimicking my tremor to them, mistaking it as nervousness and obviously, weakness.

I broke out laughing because it really was funny.  Then I briefly explained the condition, apologized if it was ever a distraction, and moved right into commenting on some research that rebalanced the pontification that had been underway.

Last year was a breakthrough of sorts because essential tremor was reclassified, giving it a much more specific code and more access to funding for research to find a cure.

There are medications that work about half the time but for me they gradually seem to lose effectiveness.  I remember answering a question in a meeting of a board on which I served once and hearing the tremor for the first time in my voice.

I could see alarm in the eyes of a colleague representing Duke Medicine.  I announced my long held plan to retire more than five years before I did at the end of 2009.  My calibrations in the early 1980s were on target and I left that field after forty years without an ounce of regret.

Less stress and always getting a full nights sleep have helped.

In part, I research and type these essays for many hours each day to fend off the effects the tremors have on touch typing.  I can type, but I’ve lost all ability to handwrite.  Even I wouldn’t recognize my signature now.

Friends help by signing restaurant tabs for me so the tip is legible.  Funny how such a small matter can change ones life. 

There are some interesting treatments available now.

One is a brain probe.  Another is ultrasound, but in trials it only repairs one side.  I may consider one day, if eligible, an MRI-guided gamma knife radiation treatment.  It delivers a beam of radiation in a precise dose to a tiny area of the brain that controls some of these involuntary movements.

According to a radiation oncologist quoted in an article in the newsletter Health Radar several weeks ago, a 40-90 minute treatment has benefited “two-thirds to 75 percent of people with essential tremor…”

But as my ophthalmologist at Duke joked with me a few months ago during an annual check-up when I asked about news that low dose aspirin may be a risk to eye health, “I don’t think someone who rides a Harley has anything to worry about.”

As my tremor made me carefully align my drink to my mouth at a wedding reception last weekend, I watched as the groom, a young many in his prime, cheerfully danced with his bride. 

He was paralyzed from the waist down a few years ago when he fell off a roof.  He danced their first dance from his wheelchair.

As tears came to my eyes watching them, I realized that there are many reasons I don’t have anything to worry about.

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