Diann Shaddox Foundation for Essential Tremor
This is an article from Gene who has Essential Tremors and has written some newsletters that he calls NEWSLESSLETTER.
NEWSLESSLETTER—Do You Always Shake Like That?
He got asked that question from everyone in Hilton Head Hospital who seemed more concerned with his quivering than the pneumonia which was the official reason and condition for which he had been incarcerated. But worse than the constant questioning was the blank look he got in return from the inquisitors, who had absolutely no idea what Essential Tremor was and seemed not to want to hear an explanation. (The following appeared six years ago)
He couldn't remember the first time he shook--or as the doctors would say--trembled. It didn't seem out of the ordinary to him because his father did also but he was old--probably at least thirty five; or maybe even forty, and a lot of elderly people shook--but kids weren't supposed to do that, were they?
So his parents took him to the doctor just to be sure that it wasn't something weird. The doctor examined the young boy and then looked at his father and said, "Your son has familial tremors--the same as you!" The boy had kind of figured that out already, so he felt pretty good, plus he learned a lot of new words that day, including diagnosis, which was what just had happened to him. He also learned about how you inherit stuff and about genes--and since that was his name he felt real familial with that word.
On the way home, his father told his mother that he was sure of it all along and he didn't appreciate having to pay some quack to tell him what he already knew. His mother said that it was good to know officially, so now they could worry about other things, like his asthma. Sometimes when he couldn't breathe right, his parents would make him sit in a chair leaning over a thing called a vaporizer that made steam and then they covered him up with a blanket over his head like an Indian Chief. After about an hour of that he could breathe pretty good again. They even thought about moving from New York to Arizona so that the dry air would be good for his "condition." But instead they moved back to Pennsylvania and wouldn't you know it, the asthma went away, and instead he got hay fever. He wasn't sure whether he might rather have the asthma back if he had a choice, because every year starting on the first of August, he would begin to sneeze and his nose would run and his eyes would itch and that lasted for a month until school started. So every year, all the way through high school and college, he spent the summers loading up on Kleenex. Then a miraculous thing happened. He got married and that was the end of Mr. Hayfever. But he still had the good old shakes.
Now it was time to go into the Army like everyone else he knew, and he enlisted in a medical unit in the Reserves and promptly got recalled onto active duty. And of course the unit gave everyone physicals and one of the nurses said she thought that he had delirium tremens. Well, that really sent him into spasms, until he found out that she wasn't really a nurse, but a dietitian, who liked to dish out medical advice. Actually, the shakes helped him avoid becoming a ward orderly, since nobody would let him get close when they saw him shaking a needle at them wanting to take blood. So he got to type instead of emptying bedpans; and that was a good thing.
Finally after his military career ended, he went back into the publishing and printing business and got on with his life. The Army had taught him how to really smoke properly and he managed to go through two packs a day for the next 25 years which helped increase the shakes, and he learned how to drink professionally, being in sales and all. And would you believe that he discovered that the shaking would go away after he had a few drinks? And like everything else, the renamers even managed to change the name for his shakes to essential tremor. Then, at age fifty he scheduled a physical, and he thought the doctor would most likely tell him that he would die if he kept on smoking. So he quit and then proudly told his doctor, who said, "Hmmmmm." He noticed a pack of Winstons in the doctor's shirt pocket.
Up to this point in his life, he had managed to always be aware of everyday things that other people didn't have to worry about--such as trying to light a lady's cigarette, or carrying two martinis across a dance floor, or ordering soup in a restaurant, or trying to put a screwdriver to a screw, or hold the copy still while reading aloud. (His hoped-for-career in broadcast journalism had ended when he was asked to read the news for his local radio station, where he had to stand at a mike and hold the copy in front of him. He would be able to project better they had told him. Friends listening to the broadcasts wondered why it was so noisy in the studio because they kept hearing what sounded like paper rustling.)
Meanwhile, he could always look to his father for being much more animated than he was when it came to shaking. He never could understand how he was able to read the newspaper--he figured his eyeballs must have been in the same rhythm as his hands. And his father was always trying a different remedy for the tremors. He offered every new possibility to his son, who always declined.
He became known to more than one friend as Shakey, and people would ask him if Shakey's Pizza was any relation. No, but the guy who started the chain back in 1954 in Sacramento CA, Sherwood "Shakey" Johnson, got his nickname because of the nerve damage he got from a bout with malaria during WWII. He also thought that he would have fit right in with The United Society of Believers in Christ’s Second Appearing, otherwise known as the Shakers. They, of course died out, literally, and today there are only two left in Sabbathday Lake, ME. He visited there a few years ago, but didn't pick up any special vibes.
When it became time to retire, he dutifully retreated and promptly contracted CHF (Congestive Heart Failure), which led to COPD (Chronic Obstructive Pulmonary Disease) which authorized the use of at least six new medications. And, of course, he kept his good old tremors, which his new GP was convinced could be helped with medication. He read the warnings on the prescription and decided against taking it since he didn't look forward to the possibility of having a seizure or two.
And then he realized that the problem was not in the fact that he had the shakes--but rather that other people seemed more concerned with his situation than he was. He had managed to tremble with elan and his pulsating often fit right into the rhythm of the music that he was playing or listening to. He recalled with nostalgia the old days of "marking up type." for the typesetter, wherein different underlining's meant different things (i.e.. a line under a word or phrase meant italic, two lines meant small caps, three lines were capitals, but his favorite was the indication for boldface--a squiggly line, which he did impeccably.)
His sons and his brother likewise had not had to alter their lives--except on rare occasions requiring total quavering abstinence such as aiming a gun, which none of them did anyway. His brother Andy has come up with one solution; "Now if it occurs to me that someone is noticing I tell them that for entertainment I make my wife watch me thread a needle. The trick is to have your hands touching so that the shaking places both the needle fingers and the thread fingers in harmonic movement."
But now that he had reached his 70s, he figured that most people would chalk off his quivering to being an old guy. However, for the rest, like small children he needed to have some ready replies. In his current summer non-job as a docent at the Pemaquid Point Lighthouse in Maine, he has been asked various ways about the shakes. "Are you cold?" one small boy asked on a particular chilly morning. He said that he was.
Direct questioning, however demands a direct answer so that when someone simply asks why he shakes so much, he has settled on one of four answers:
1. An old war wound.
2. A contagious disease (exacerbated by spending too much time in a lighthouse.
Otherwise known as EC, excessive claustrophobia)
3. Stage fright
4. None of your business
So here we are with most people in the medical community unaware of a condition that effects an estimated 10,000,000 Americans, and chances are that the majority of them aren't even aware of why they shake, and have taken no steps to find out. There is a national organization begun 25 years ago ( http://essentialtremor.org/ ) whose mission statement is, “...to find the cause of essential tremor (ET) that leads to treatments and a cure, increases awareness, and provides educational materials, tools, and support for healthcare providers, the public, and those affected by ET.” One of the benefits that they provide is to sponsor support groups around the country. I belong to the one in Savannah, GA which meets monthly, and you'll have to excuse me now, so I can go over to St. Joseph's Candler Hospital for this month's meeting. And by the way March is Essential Tremor Awareness Month. So now you know. I'll bet you that some of you readers have ET and some have it and don't even know it, and many of you know somebody else who probably has it. So now's a good time to spread the word--just send them this issue. We are indeed movers and shakers.
E-gene © Copyright 2014 Newslessletter
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