Thursday, September 03, 2009

Essential or Familial

I noticed it sitting in sacrament meeting. I went to a church with my family where trays of water and bread were passed down each pew. The water was in little tiny cups placed in holes in the tray.

My family was sitting together in the middle of the pew that day. I was about 11 years old. As I took the cup, my fingers trembled and my wrist quivered slightly and I spilled some.

No big deal, but it felt like everyone in both directions on the pew and behind leaned out and stared in concern like I was having a stroke or something.

It had probably first been apparent in first or second grade when we were all gathered around an experiment with “bluing” and rocks. The teacher was very clear about being extremely careful not to spill and I volunteered to pour it. But the condition didn’t really begin to kick in until teen-age years and doctors when I’d get a physical each year for school sports would tell my Mom that it was “just part of growing up” and would pass. They were right about a lot of things passing but not this.

It has progressively worsened. It is called essential or familial tremor.

I can be standing with a cup of coffee or a drink at a stand up event and talking to someone and all of the sudden my hand and wrist seems to make a sudden jerk or begin shaking and I spill. I’ve taken medication and the doses have gradually increased. It works for a time and then doesn’t and over time the medications just seem to have less and less effect.

As you can imagine, I’ve learned to ignore it or work around it. I was the only boy in my typewriting class when it was first offered in high school. And learning to type has meant I rely very little on hand writing which was always difficult and now near impossible except for a quick “RB.”

I didn’t know it then, but it apparently is a disability that could have qualified for a note taker in law school. Thank goodness they permitted portable typewriters during tests. But it really isn’t that rare. I’m one of 10 million people with a mutated gene resulting in what is called essential tremor, not as I understand it, because I need it but because there is no underlying factor and in 96% including me, it is inherited.

I notice it in my Mother’s hands now but she’s going on 82 so I can’t tell if it is the same as my condition or age related. I first noticed it in my daughter’s hands when she was in junior high or high school. I had hoped she’d be in the 50% that don’t inherit it.

It isn’t degenerative but it can begin to affect other things. Recently and only rarely, I have detected it now in my voice, similar to the actress Katharine Hepburn who also had the condition and was and is often mistaken for Parkinson’s.

For all of my work life, I could tell in their eyes when a few people would judge me. A very small percentage would ask me about it in concern. I’ve learned to explain it when I see people too concerned or distracted. Mostly it is either mildly embarrassing or annoying when people become more interested in what my hands are doing than what I’m saying.

Others have made the mistaken assumption, I’m nervous. I’ve never found any correlation with being nervous. Actually when I’m most nervous, say before a speech, the condition doesn’t seem to be a problem. Alcohol makes it disappear almost completely.

It affects me other ways. I have to hold a key with both hands to get it in the lock. And it was a hoot when my English Bull Dog #2 was a pup. I’d reach down to hand him something like a greenie and his head would be moving rapidly side to side trying to nab it at just the right time. It was a hoot, for both of us, I’m sure.

It seemed over time to be worse in my left or writing hand at first. So at age 40, I learned to write right handed. That worked for a while.

But cleaning out some files the other day I realized just how much my hand writing had deteriorated in the last 10 years.

It isn’t a big deal really in the grand scheme of things. I have great health and I really admire people who truly have disabilities and the way they deal with them. To me this doesn’t even classify as a disability.

I was told by my neurologist that it impacts the receptors. You see your brain doesn’t wait to send a signal for your hand to move. It apparently floods both the move and don’t move channels down to a receptor and then pulls back on one or the other when you need to move your hand.

My receptors are just messed up by that gene apparently.

The tremor is just annoying more than anything. But if you have wondered, now you know. And if you happen to have it, know you’re not alone.


Anonymous said...


Thanks for sharing your story. I appreciate the Columbia edu spirals as I haven't seen specific spirals in association with each disease.

Now you have me wondering if the Parkinson's spiral I and most others with essential tremor (ET) patients draw can be linked to the co-morbidity of Parkinson's and ET, in view of the Mayo FL recent finding…???

Tremor Action Network

Bill Geist said...


You continue to amaze me. Great post, my friend. And I look forward to the opportunities to work with you in the months ahead.


maura said...

Reyn, thanks for being so willing to share. I have a family connection to Parkinson's as well, and every bit of information I can glean that helps me understand, helps me understand. And I so appreciate your perspective on "living" with it - I hadn't realized how long you had been doing that, but I am grateful to know that it has been a long time, and you've clearly been able to do it well.

Thanks so very, very much.

LarryB said...


I saw this article today in the Herald Sun and just loved it. It's educational and it helps take the mystery out of some unexpected behaviors. I appreciate you writing about something so personal. It made my day to read this.