When You Travel with Essential Tremor
See your doctor before traveling. There are a number of very basic things you need to do to help your ET, and those things don’t change if you’re traveling. Seeing your doctor 3-6 weeks before traveling. This will give you enough time to adjust medications before traveling. Get a doctor’s letter and prescription. Get a prescription and letter (on your doctor’s letterhead) from your doctor to carry with you. The letter should outline that you have Essential Tremor and may need assistance. You also may need to carry certain medications and supplies with you. The prescription is important because you never know when you may become separated from your medications. Consider using a national pharmacy that is able to transfer your local prescription to wherever you are traveling. If you’re flying, it’s best to have all of your medication and supplies as they came from the pharmacy (with their labels on), as recommended by the Federal Aviation Administration (FAA). In addition to packing your medications, you’ll want keep them with you at your seat. Take along a certificate from the DBS manufacturer if you had the surgery and applying for TSA pre-screening so you don't have to take off your jacket and shoes. Consider emergency identification. Many people with ET carry an ID bracelet, an “in case of emergency” contact (ICE) for their smartphone, or a portable electronic record. An ID bracelet needs to identify that you have Essential Tremor so that someone helping you in an emergency can understand what’s happening and why you are tremoring, even if you’re unable to communicate with the responder. The ICE contact should be someone who knows something about your health situation. Finally, consider a portable health record that gives a provider important aspects of your care history. Tell the airport, train station, etc. that you have Essential Tremor or are traveling with someone with Essential Tremor. Even if you don't normally use a cane, walker, or wheelchair, consider bringing or using one if it's convenient. Tell the airline that you need early boarding and help. Take stretch breaks and exercise breaks when you can. Pack thoughtfully. Extra planning can help make the trip run smoothly. When packing for travel pack your supplies in a carry-on, so they’re always available. Plan for time zone changes, since this can make your tremors worse. Keep your medicine in a separate bag so it’s easy to pull out if necessary. Have your information, important documents in pockets or small bag that is easily accessible. Don’t over due on your trip/vacation. That will make your tremors worse. Get plenty of rest, drink water, and don’t skip meals. Last, enjoy your travels and don’t worry what others think. Essential tremor: Aiken resident lives with, raises awareness of disease Stephanie Turner Email stephaniedturnerAS Oct 11 2015 3:47 pm Staff Photo by Stephanie Turner Diann Shaddox was diagnosed with essential tremor in her early 20s. Today, she is the founder of the Diann Shaddox Foundation, which raises money and awareness of essential tremor, and is an author, with her first book “A Faded Cottage” also featuring the main character with the disease. You’re out enjoying a meal with your friends, when you hear a clattering behind you. Curious, you look over your shoulder to see another patron trying to grasp his fork with a trembling hand.
“Essential tremor (ET) is a neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk." It is said to affect at least seven million Americans, according to a 2014 “Tremor and Other Hyperkinetic Movements” journal article. “Everyone has some ... tremor. But these movements usually can’t be seen or felt. It’s Hopkins Medicine. Diann Shaddox, an Aiken resident in her late 50s, discovered she had ET in her early 20s. Her hands would start to shake while she was just doing normal tasks, she said in her biography. “In the beginning, doctors told me to go home, (that) I was nervous,” she said. Shaddox knew that wasn’t true, so she bypassed the doctors and went straight to a neurologist, who immediately knew she had ET. Last year, Shaddox began the Diann Shaddox Foundation with Randy Miles as the executive director; Quaid Witherspoon, the protagonist of her 2013, debut book, “A Faded Cottage: A South Carolina Love Story,” also has ET. Getting ET “Essential tremor (ET) is the most common movement disorder. It is a progressive, often inherited disorder that usually begins in later adulthood,” according to John Hopkins. “Essential tremor is thought to be caused by electrical fluctuations in the brain that send abnormal signals out to the muscles.” The gene that causes ET has not been identified, and how it’s inherited, if the person does inherit it, differs among patients, according the National Library of Medicine’s Genetics Home Reference. In some causes, “they almost know it’s coming, because generation after generation have a pretty pronounced tremor,” said Dr. Michelle Lyon, Carolina Musculoskeletal Institute’s neurologist. Staff Photo by Stephanie Turner Dr. Michelle Lyon is the neurologist at Carolina Musculoskeletal Institute Since Shaddox’s father passed away before she was born and her mother died when Shaddox was a toddler, she isn’t completely sure how she got her ET, though she suspects it’s from a great aunt whose hands would shake. “In most affected families, essential tremor appears to be inherited in an autosomal dominant pattern, which means one copy of an altered gene in each cell is sufficient to cause the disorder, although no genes that cause essential tremor have been identified,” according to the National Library. “Essential tremor may also appear in people with no history of the disorder in their family.” There is no genetic test to detect whether or not you will get ET, Lyon said. “Your health care provider will ask you questions about your health history and family history. He or she will also look at your trembling symptoms. Your provider will probably need to rule out other conditions that could cause the shaking or trembling,” according to John Hopkins. ET is often confused with Parkinson’s disease, which affects less people and is more detailed in its symptoms than ET, according to Lyon. Parkinson’s, for example, “generally involves slow movements (bradykinesia), rigidity (stiffness) and problems with walking or balance,” whereas those symptoms are abnormal in people with ET, according to the International Essential Tremor Foundation. Living with ET “This (condition) affects all nationalities, all sexes, all ages – all everybody,” Shaddox said. In addition to running the Diann Shaddox Foundation and publishing “A Faded Cottage,” Shaddox has written time-traveling romance “Whispering Fog” and the historical “Miranda: Her Life’s Story,” with proceeds from her books benefiting her foundation. The condition first affected her right hand before progressing to her left. Shaddox can no longer write for extended periods; when she does write, the words are often scribbled. “If you are right handed, don’t use your right hand; (then) write your name when you are tired, and just keep writing your name, until your hand gets tired. That’s kind of like ET,” she said. “Really simple acts can be horrifying.” Trouble with writing and eating are often when people come in to get examined, according to Lyon. “They are embarrassed to go out to eat at a restaurant because they are unable to hold the fork and cut the food,” she said. “I think a lot of people ignore it, until they get to that social situation.” Shaddox often has to use her opposite hand to steady the one cutting food or putting on make-up and can no longer cross-stitch or play the piano. Though her hands trembling are the more noticeable symptom, Shaddox’s head shakes back and forth, and she can feel her voice starting to tremor. “I’ll take two (words) and make up a whole new word while I’m talking,” she said, adding that she also mixes up and forgets words. The tremors tire her hands but do settle when the limbs are resting, and Shaddox can drive. “My case is mild,” she said. Stress, hunger, fatigue and anger can aggravate the tremors, according to the National Institute. “My hands look like a bird’s wings flapping, when I get stressed,” Shaddox said. “It’s so embarrassing when you are sitting there, and people are staring at you when you are trying to write. You want to scream, walk out, because it’s embarrassing.” Treatment ET has no cure but can be treated, according to Lyon. Medicines prescribed can include tranquilizers, ones that “affect how brain nerves work” or are anti-seizure, according to John Hopkins. When the condition is so severe and medicine doesn’t help, there are surgical options, Lyon added. Two are deep brain stimulation and thalamotomy, with the main difference is thalamotomy, which, according to the American Academy of Neurology, actor Micheal J. Fox underwent for his Parkinson’s, involves destroying a piece of the brain while deep brain stimulation does not, according to the International Essential Tremor Foundation. MCT Graphic/”Minneapolis Star Tribune,” 2009 This graphic explains how deep brain stimulation, using a device similar to a heart pacemaker, can improve the quality of life for people suffering from Parkinson’s disease. The procedure is also used in more severe cases of essential tremor. Shaddox no longer takes medication but does lift weights and tries to stay healthy. When she does her public appearances, she might have some wine nearby, as the drink temporarily calms her, she said. Shaddox has 16 more books she wants to publish and would like to see her foundation match the The Michael J. Fox Foundation for Parkinson’s Research’s scale. Shaddox said the foundation’s An Evening in the 1800s with Kim Peevy that was scheduled for Saturday has been postponed but she will have a book signing in April. “The foundation’s mission is to bring awareness, to educate,” Miles said. If you are experiencing abnormal tremors, consult with a physician. For more information on ET, visit www.diannshaddoxfoundation.org, www.aan.com, andwww.essential tremor.org. Stephanie Turner graduated from Valdosta State University in 2012. She then signed on with the Aiken Standard, where she is now the arts and entertainment reporter. I have had familiar tremors since 2008 and was on primidone and propractinol but propractinol made me to drowsy to drive so was taken off.My general Manager at a optical chain first noticed my tremor when I was making glasses he noticed head motion in yes motion and hands shaking.this made it harder to make glasses and my performance suffered which resulted in many disciplinary's verbal and written.after about 2 years I finally had enough and filed a disability discrimination lawsuit but did not know the time limits and I was to late.But because of the lawsuit I have been basically been blacklisted in the optical field by this large optical company.So since then I got accepted into the operating engineers. 2 years ago but have noticed that with stress and the cold my tremors have gotten worse even with primidone.my family doctor tripled my dosage of primidone until I can see my neurologist in 2 weeks and she also limited my work abilities to being not able to climb ladders and scaffolding in addition to not running heavy equipment which is a primary job function of a heavy equipment operator.So now don't know what to do .If I should file disability if the neurologist says I cant run heavy equipment any more or at age 47 start all over again trying something different even if my tremors get worse again and I start getting disciplinary's at a new job again?Also I would like to go to a support group but there is none around the Champaign/Urbana ILL area.
The Things of Life Familial or Essential Tremors: You Are Not Alone by Nancy Carol Brown Hardin I don't dare carry a cup of coffee from the kitchen to my computer desk. It's impossible for me to take photographs with any kind of camera. Turning the pages of a book is difficult and sometimes I turn two or three. When I eat, it's almost like playing a game of "catch the fork," or the other fun game of "How much of this food can I wear?" I'm no longer able to hand write anything, and barely able to sign "Love, Mom" or "Love, Granny" to birthday and Christmas cards. I use a label program on my computer for addressing envelopes. As for other relatives or friends, they get cards from me only online. I'm Sure You're Wondering.... If you're wondering "What on earth is this woman talking about?" here's the answer. I have a condition that is known as Familial Tremors orEssential Tremors. My family knows this, but few of my online writing colleagues do, so this may be a revelation to some. I've Lived With This For Years That's right, it's nothing new for me. I've had this condtion for several years, but it's worsened as I've aged. Oddly enough, it seems to affect my right hand more than my left, and since I'm right handed that's not a good thing. In my young years, I was able to partially control it or mask it, but now that's no longer possible. The simple task of bringing a cup of coffee with me to my office is a cautious task at best, and a total mess at worst. Some days I can manage to actually have coffee in my cup when I get to my desk. HA! But the solution of course, is to use acovered carafe, or a thermal cup with a no leak top. I prefer the cup, because the coffee stays hot longer. There Are Medications For Tremor A few years back my doctor put me on a medication originally designed to help with convulsions, but which is also used to aid the lessening of tremors. After about a year, the strength of the dosage was increased. This medication is only taken at night when I'm going to bed, because it does tend to put me to sleep. It has an accumulative effect, providing better results over a regular period of taking the drug. However, there are those who prefer not to take a medication for the problem. Other Diseases and Conditions That Mimic If I miss my meds for any reason, and I do my best not to, my entire body shakes as though I have what the old folks in my childhood home called "St. Vitus Dance," which is actually Sydenham's Chorea, another movement disorder. As far as I know, there has never been a connection between the two. Parkinson's Disease, is another ailment that causes uncontrollable movement, caused by a degenerative disorder of the central nervous system. Again, there has never been a connection between Parkinson's and Familial or Essential Tremors. Why Is This Called "Familial" or Essential Tremors? These tremors are often referred to as Familial or Essential Tremors because they usually run in families. It's thought to be a genetic mutation and is dominant, meaning if only one of the parents has it, the children are more likely to have it. I can remember my mother as she aged, and I watched her hands shaking. I didn't realize it wasn't due to her age, but to this disorder. Now I see the signs of tremor in two of my children, a son and a daughter. They didn't show the symptoms when they were little, but developed them in their young adult years, just as I have. I'm sure as they grow older, they will have the same problems I do. There are young children who have Essential Tremor, and you can find more about it at the links I've provided below. www.diannshaddoxfoundation.org http://nancywriteseverything.blogspot.com/2015/01/familial-or-essential-tremors-you-are.html |