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.
This is Jerry Slea one our Millions Faces of ET, who lives each day with ET! Please help us fight to #EndET. "Here I Am" by Jerry Slea (c) 2016 Uplifted Heart Music
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.
“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.”
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.
Diann Shaddox's Story
Diann was born on December 18th in a small southern town of Nashville, Arkansas, the youngest and only daughter of William and Mary Ann Shaddox. But, fate stepped in and William, a crop-duster, at the age of 25, died in a plane crash on November 20th, a month before she was born, therefore, Diann was never able to meet her father. Mary Ann, who grew up in Miami, Oklahoma, moved back to Miami after William’s death, where Diann lived until her mother died when she was only 3 years old. Diann then moved to Nashville, Arkansas to live with her grandparents. At the age of 10, Diann’s Granddad Holt died of a stroke, leaving her grandmother alone to see to her.
Diann learned from an early age about death and how life should not be squandered. Her Mamow Holt, who had lost her right hand in an accident at a factory in Nashville, Arkansas, taught her that you never give up. Her grandmother never let anything stand in her way. She taught herself to write, cook, and even how to sew and make quilts with her left hand, without any prosthetics. Being handicapped was a word she never used.
Growing up in a small town was wonderful, learning to fish, growing a garden and the most important thing, patience of a grandmother. Stories from the past evolved of family bringing many stories to life. Sitting out late at night on cool summer evenings, swinging on an old swing staring up at the stars helped Diann’s vivid imagination grow.
She has an enthusiasm for travel and living life to its fullest. You have only one life and shouldn’t waste it. The zest for meeting and getting to know people is a very important component in her life. She is a believer of herbs, natural and organic foods, and a big supporter of Bio-identical Hormones and keeping our planet green.
Diann has lived in eight great states, Arkansas, Oklahoma, Kentucky, New Jersey, Virginia, Texas, and Florida. South Carolina is now her home with her husband, Randy, her greatest supporter.
Living with Essential Tremor
I was in my early twenties when life changed for me. My hands began to shake when I’d do tedious work. No one, not even doctors, could figure out what was happening and they, the doctors, believed I was nervous and I just needed to calm down.
One day, when I was standing at the post office window in Louisville, Kentucky changed my world. You see a simple form containing my name and address I wasn't able to fill out. I could hear the whispers and comments from people standing in line behind me The confused look of the post office worker's face told the entire story.
I had been taught not to show my feelings in public, but tears flowed down my face as I raced, clutching my package in my arms, out of the building. That one day I had to find my answer and I went out on my own to figure out what was happening to me. Without my GP or insurance permission, I found a Neurologist and made an appointment. That day in the doctor’s office, I finally made the discovery that I had Essential Tremors.
I was relieved to know what I had, but didn't really understand what Essential Tremor was. I thought I was the only person with this problem and didn't bring it up with my friends and family, unless someone asked.
Not letting anything deter me, I continued life with the determination that I’d learned from my grandmother. I was unrelenting to do tedious work like counted cross-stitch on linen, and playing the piano even with trembling hands. It was as if my mind would relax letting my hands work without thinking. I learned to hide my hands out in public, to grip my drinking glass with both hands, and how to use my body for cover as much as possible.
Things seemed to be working for many years, but on my birthday, December 18th, 2010 my hands were shaking uncontrollably, 2010 had been a year when many people began to question and stared at me wondering why I was nervous or thinking maybe that I was just weird. Being out in public was difficult, the stares were tough, and once more, the simple feat of filling out forms was devastating. Even being in a doctor's office was difficult, as they, nurses, questioned why I was so nervous and shaking so much, giving me stares.
That night of December 18th, I sat in my office and anger grew watching my hands quiver as they hovered over the keyboard, and for once in my life I felt sorry for myself. The question of why, a question without an answer played in my mind. Being a writer the words began to flow and Quaid Witherspoon, a famous artist, was born. A man who had everything or so he thought, but now his hands had deserted him and his life of painting had ceased, becoming a bitter man. The story of Quaid Witherspoon, the novel 'A Faded Cottage', became an incredible love story, one about strength of mind to fight fate and never accept what life throws at you.
I found out that I wasn't alone and millions of people worldwide had Essential Tremor. I began to do book signing and would ask if anyone knew what Essential Tremor was. Again, I was shocked that no one knew what ET was even though it is the largest and most common movement disorder, 10 times larger than Parkinson’s. It seemed that 99% of the time the answer was no. Many police departments even answered the same.
Through this process of bringing A Faded Cottage to life, I have learned so very much. Finding the ET Facebook groups, talking and listening to everyone’s stories at book signings, stories that are so similar to mine, has brought calmness to my life. We have to tell others about ET, so people who live with ET aren't sitting alone wondering why this is happening to them.
Even though the stares will forever be, I won’t give up. Now, I’m even more determined the word will spread about Essential Tremor and I’m going to help make it happen. For each book sold of “A Faded Cottage,” 100% of the sales will go to Diann Shaddox Foundation for Essential Tremor to make a difference.
What is Essential Tremor?
Essential Tremor is the largest and most common movement disorder in the world and is 10 times larger than Parkinson’s. Essential Tremor (ET) is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs, or trunk. Over 10 million Americans, including children, have Essential Tremor. That’s about 5% of all people in the United States. For comparison sake 7.8% of the population have some type of diabetes. Most people though haven’t heard about Essential Tremor and the Diann Shaddox Foundation for ET is adamant to bring attention to the world.
First and foremost, ET can begin at any age, from ages 1 to 100. ET doesn't discriminate with age, race, sex, or national origin. The Diann Shaddox Foundation for Essential Tremor can make a difference in millions of people’s lives and directly change the future for everyone who will inherit or develop ET but we need your help. We want to show that Essential Tremor isn’t just for the elderly, but children of all ages have ET. Many people with ET have lost their jobs and college students are having their dreams of special careers disappear before they have a chance to begin. We have to bring people out of hiding and educate teachers in school so children and teens aren’t bullied about their tremors. The stories are endless from people with Essential Tremor struggling with depression. We will make a difference and bring awareness to businesses, schools, and first responders.
Diann Shaddox is Founder of Diann Shaddox Foundation for Essential Tremor, author, mother, grandmother. Diann has been an activist for ET and been working to bring awareness to the world through ‘A Faded Cottage’ a SC love story about an artist who develops ET.Diann is adamant to bring a change in movement disorders because she has ET. 100% of the sales of Diann's book, A Faded Cottage go to Diann Shaddox Foundation to help find a cure for Essential Tremor.
Diann is also the author of "Whispering Fog" a time travel & Miranda, a love story.
Diann learned from an early age things may look impossible, maybe risky or pointless, but you have to give it a try or you'll never know if you don't give yourself a chance.
A FADED COTTAGE
When a love letter written by a teenage boy becomes lost after a summer filled with passion, it brings about an incredible love story of two people being reunited, after thirty years.
When Essential Tremors take over a famous artist’s body, a simple feat of holding a paintbrush turns Quaid Witherspoon’s life upside down, becoming a bitter man. This is his journal of how he battles fate, not of his entire life, but of two weeks. Quaid had everything money could buy, except the two things he loved the most, his love of painting great masterpieces, and the only woman he had ever loved. The calming waters off the coast of South Carolina calls Quaid back to Hathaway Cove, to a small, faded cottage, one with a leaning front porch, worn paint so similar to him, flawed. The same beach where he began painting as a young boy, the place he met his one true love, and the place he let her go.
Sandy, Quaid’s love from his past, learns he is wondering about her, just as she is wondering about him. Their love is alive, meeting for the first time in thirty years, letting the years fade away, but fate has another twist. Sandy keeps a secret, letting them have their two weeks.
What if you were able to relive your life and rediscover you teenage love… Would you?
To learn more about Diann go to: www.diannshaddox.com
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.
What is it like to live with Essential Tremor?
Can you imagine waking in the morning and not be able to hold a cup of coffee in your hands without spilling it, or not able to make your breakfast without making a mess. Then, trying to dress, buttoning your shirt, shaving, and putting on makeup or jewelry is almost impossible for millions.
When you’re out in public having people stare as your hands tremor, head shakes yes or no, and scared to death you might have to sign or fill out a form. Eating is another huge problem, slinging food from forks and spoons trying to make it to your mouth as your hands tremor, and spilling your drink unless it’s in a sippy cup with a lid. Many people with movement disorders voice tremors and communication is difficult. People have lost their job when their boss finds out about their tremors.
Now, how would you like to be a 5 year old in kindergarten and can’t color the page, write your ABC’s like the other kids. How would it feel to be a teenager trying to eat, write, or grasp things in their tremoring hands while others stare, giggle, bully, and tease.
Essential Tremor is the largest movement disorder in the world and is 10 times larger than Parkinson’s. What is Essential Tremor? (ET) is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs, or trunk. Over 10 million Americans, including children, have Essential Tremor. That’s about 5% of all people in the United States. For comparison sake 7.8% of the population have some type of diabetes. Most people though haven’t heard about Essential Tremor and the Diann Shaddox Foundation for Essential Tremor is adamant to bring attention to the world.
First and foremost, Essential Tremor can begin at any age from ages 1 to 100. ET doesn’t discriminate with age, race, sex, or national origin.
The Diann Shaddox Foundation for Essential Tremor is a Non-Profit public organization 501 c(3) giving hope to millions, including children, living with Essential Tremor. Our mission is to increase awareness about people afflicted with Essential Tremor and to find a cure.
Please join the fight and the Diann Shaddox Foundation for Essential Tremor and make a difference. Donate www.diannshaddoxfoundation.org.
Diann Shaddox is Founder of Diann Shaddox Foundation for Essential Tremor. She is an author of ‘A Faded Cottage’ a South Carolina love story about an artist who develops Essential Tremor and she has ET.
I was in my early twenties when life changed for me. My hands began to shake when I’d do tedious work. No one, not even doctors, could figure out what was happening to me and they, the doctors, believed I was nervous and just needed to calm down.
One day when I was standing at the post office window in Louisville, Kentucky changed my world. You see, a simple form containing my name and address I wasn't able to fill out. I could hear the whispers and comments from people standing in line behind me The confused look of the post office worker's face told the entire story. I had been taught not to show my feelings in public, but tears flowed down my face as I raced, clutching my package in my arms, out of the building. That one day, I had to find my answers and I went out on my own to figure out what was happening to me. Without my GP or insurance permission I found a Neurologist and made an appointment. That day in the doctor’s office I finally made the discovery that I had Essential Tremors.
I was relieved to know what I had, but didn't really understand what Essential Tremor was. I thought I was the only person with this problem and didn't bring it up with my friends and family unless someone asked.
Not letting anything deter me, I continued life with the determination that I’d learned from my grandmother. I was unrelenting to do tedious work like counted cross-stitch on linen and playing the piano, even with trembling hands. It was as if my mind would relax letting my hands work without thinking. I learned to hide my hands out in public, to grip my drinking glass with both hands, and how to use my body for cover as much as possible.
Things seemed to be working for many years, but on my birthday, December 18th, 2010 my hands were shaking uncontrollably. 2010 had been a year when many people began to question and stared at me wondering why I was nervous or maybe thinking that I was weird. Being out in public was difficult, the stares were tough, and once more, the simple feat of filling out forms was devastating. Even being in a doctor's office was difficult as nurses questioned why I was so nervous and shaking so much, giving me stares.
That night of December 18th I sat in my office, anger grew watching my hands quiver as they hovered over the keyboard, and for once in my life I felt sorry for myself. The question of why, a question without an answer, played in my mind. Being a writer the words began to flow and Quaid Witherspoon, a famous artist, was born. A man who had everything or so he thought, but now his hands had deserted him and his life of painting had ceased, becoming a bitter man. The story of Quaid Witherspoon, the novel 'A Faded Cottage', became an incredible love story, one about strength of mind to fight fate and never accept what life throws at you.
I found out that I wasn’t alone and millions of people worldwide had Essential Tremor. I began to do book signing and would ask if anyone knew what Essential Tremor was. Again I was shocked that no one knew what ET was even though it is the largest movement disorder 10 times larger than Parkinson’s. It seemed that 99% of the time the answer was no. Many police departments even answered the same.
However, the first of May, my life was jerked to a stop. My healthy young son, who was backing me on my journey, went to the hospital with a headache. We learned he had an aggressive stage 4 cancerous tumor the size of a lemon in his brain. He elected to have surgery, never woke, and died on May 20, 2014.
My life now had changed or maybe seemed to have ended. In June 2014, I sat back and reflected about my journey that had all started with one little book “A Faded Cottage.” How that one night on my birthday writing that book had sent me on a wild journey and I didn’t know if I wanted to continue. I had set out just to write my stories, but my life had turned into a whirlwind and now I had to make a decision.
I don’t give up easy and knew my son would be disappointed if I didn’t continue with the Diann Shaddox Foundation for Essential Tremor. On August 29, 2014 the IRS approved Diann Shaddox Foundation for Essential Tremor.
What is Essential Tremor? (ET) is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs, or trunk. Over 10 million Americans have Essential Tremor, including children, and millions more people worldwide. That’s about 5% of all people in the United States. For comparison sake, 7.8% of the population have some type of diabetes.
Through this process of bringing A Faded Cottage to life I have learned a lot. Finding the ET Facebook groups, talking and listening to everyone’s stories so similar to mine has brought calmness to my life. We have to tell others about ET, so people aren’t sitting alone wondering why this is happening to them.
Even though the stares will forever be, I won’t give up. Now, I’m even more determined the word will spread about Essential Tremor and I’m going to help make it happen. For each book sold of “A Faded Cottage,” proceeds from the sale will go to Diann Shaddox Foundation for Essential Tremor to bring awareness and help find a cure. www.diannshaddoxfoundation.org
Please help me in my journey and join Diann Shaddox Foundation for Essential Tremor and donate to help us raise funds to find a cure for ET. www.diannshaddoxfoundation.org.
No you won’t die from Essential Tremor, you will die with it.
No you won’t die from Essential Tremor, you will die with Essential Tremor.
There are many misconceptions and people believe that Essential Tremor, (ET) is just a slight tremor in the hands of old people, that’s not true. First and foremost, Essential Tremor can begin at any age, from ages 1 to 100. ET doesn't discriminate with age, race, sex, or national origin.
I’m sure you are wondering, like most people, what is Essential Tremor.
Have you ever heard of ET? 99% of the time the answer is no. Many police departments answer the same even though Essential Tremor is the largest and most common movement disorder in the world 10 times larger than Parkinson’s. What is Essential Tremor? (ET) is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs, or trunk. Over 10 million Americans have Essential Tremor, including children and millions more people worldwide. That’s about 5% of all people in the United States. For comparison sake, 7.8% of the population have some type of diabetes. Most people though haven’t heard about Essential Tremor.
Essential Tremor can be inherited. *
Here are a few things people living with Essential Tremor deal with. Essential Tremor won’t kill you, but…
No you won’t die from Essential Tremor, you will die with it.
The quality of life for someone with a movement disorder can be devastating and depression can set in and you wonder is life worth living. Many people hide in their homes not wanting to face the public with the stares and cruel remarks. Numerous people not only lose the quality of life, but they lose their independence of life.
There are many stages of Essential Tremor, mild to severe tremors, and the progression will vary, but the outcome is the same; some part of their body tremors.
That is why the Diann Shaddox Foundation for Essential Tremor is adamant to find a cause and cure for Essential Tremor. Please join us and help millions around the world living with Essential Tremor. We can make a difference, but we need your help, donate now.
*(The inherited variety of essential tremor is an autosomal dominant disorder. A defective gene from just one parent is needed to pass on the condition.If you have a parent with a genetic mutation for essential tremor, you have a 50 percent chance of developing the disorder yourself. Mayo Clinic)
Please go to www.diannshaddoxfoundation.org to learn more.
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.
My story about ET by Vibeke
This is actually quit emotional. Putting words to something I tried to hide and ignore for a lot of years. The first comment I had about shivering was in 8th or 9th grade, approximately 14 years old. A classmate commented, I think she was worried maybe, but somehow it hurt me and confused me. I had never seen a doctor about it, and we never talked about my tremor at home. My mother had the same thing, but at another level, so somehow I never connected the two. I think not having an answer to give, was most uncomfortable.
Once in my early teens, we were visiting my sister and brother in law. As usual I came to spill out a drink, and he got somewhat angry. Maybe not too much, but of cause it felt unfair. My mother had to come to rescue and explain. I don`t remember this episode, she told me when we finally discussed the condition a few years ago. I
think there must have been a lot more...
Day to day life, growing up with tremor, not too badly affected, I think I adapted the best way I could. I was
copying some of my mother’s habits, not thinking too much about it. But, of cause, some things I hated. To write on the blackboard, not having anything to lean my hand on... I just understood that one yesterday, reading the teachers manual at the IETF website. My handwriting has never been pretty, except if I take a lot of time and effort. I write readable, if I try, but like a shopping list hastily put down is a challenge for my husband or anyone else to read. This was always put down as a family weakness from my father’s side, but I`m reconsidering... Tremor is a much more valid explanation. I preferred to part the letters, maybe a coping strategy, I don`t know, but the teachers didn`t approve. Today I do something in between and it works for me, both in speed and readability. I`ve finished my part of exams and time usually is not the issue... Although knowing it might be, and knowing that gives the possibility of extra time, could be a benefit for my son, who has inherited this condition.
(I`m not expecting any more exams, but with the conditioning worsening, you never know.) My problem though threw long exams, has been aces after wards, probably from grasping hard to the pen.
Another school-related topic was that about having somewhere to place your manuscript. Holding a piece of paper and reading at the same time... It just doesn’t work, and you look (maybe feel) like a fool. Today, I find myself in waiting rooms, like the doctor’s office, trying to read a magazine, but my hands shivering while I`m holding it up from my lap, so I can`t read and it just feels so stupid. So I put it away and do nothing. (And my doctor is usually really late, so that’s boring.)
Lately we received a report from school, stating that I seemed nervous. That one was hard to swallow. What do they actually know? Kindergarten said the same about my son earlier... How people perceive you can be very important, and hurtful. I tell people about ET, when it seems natural, but not everyone should need to know.
Today, any fine movement skills may be troublesome. Screwdrivers, sewing, knitting, the smaller, the more parts, the worse to handle... And I love doing handcraft... Why, I have no idea. After working out, my tremor is especially bad, but things like anxiety or stress will also impact a lot.
ET is not a well axepted diagnoses as far as help comes. Parkinson patients get their meds for free, we don`t. No matter how serious the tremor.
Sitting here writing, I keep hitting the wrong buttons. Sometimes because I am writing a foreign language, using odd keys, but mostly shivering over the emotional stress. Well, not the first time writing and correcting... Bad tremor-days, I might even miss with the mouse, but usually that works, since I have support from the table. I`ve got a keyboard with support for the wrist, first because of pain, but maybe that was related to
the need for support? Reading about ET and reading other peoples stories gives me a lot of thoughts about how things relate to each other... Not that many solutions.
I have trouble with shaving and holding any drinks. My biggest one is I work at a big retail store and when a customer comes up with CD/DVD's we are told to open them up and take out the disk. I have tried but I kept dropping them, so now I tell the customers that I am sorry I don't take them because of my shaking hands. So far they are happy with that.
Well, it’s been four years since I sat down in my office and wrote “A Faded Cottage” a SC love story about an artist who develops Essential Tremor. I have to say my life has change dramatically because of this one small book. So today I have to say "Happy Birthday Quaid Witherspoon."
“A Faded Cottage” is a journal of only two weeks of Quaid Witherspoon’s life and takes place from December 18 to the first of the New Year. I’ve sat back pondered what my life would be like if I’d not published “A Faded Cottage” March 2013 and continued with my plan of publishing my other books.
I guess I have to believe my journey was for a reason. Life can be a mystery and I wouldn't have taken on the challenge and be sitting here today working on a new foundation, Diann Shaddox Foundation dedicated to find a cure for Essential Tremor, if I’d stayed the route that I’d planned.
I became adamant to make a change when I began talking to people around the country and no one had heard of Essential Tremor, even though I’d had ET for over thirty years and learned 10 million Americans also had ET, including my son Rick who died in May 2014. I kept asking myself; how could that be? Something needed to be done. But I soon learned that one cold December night changed my life, for the better only time will tell that answer.
It was the night of December 18, 2010, my birthday, a very calm and uneventful night. I couldn't
sleep, which isn't unusual for me, so I made my way downstairs to my cubby office. I decided, since I was wide-awake that I’d work on one of my novels.
I sat down in front of the computer and began to type, but it seemed my fingers and hands had another idea as they shook uncontrollably hovering over the keyboard. If you've tried to text as you are riding in a car or train when it’s bumpy, then you might understand how difficult it is to type when you have trouble hitting the correct keys with tremoring fingers. You see, I have had Essential Tremor from my early twenties and I’d learn to deal with my tremors for many years, but this night it became overpowering.
I leaned back in my chair and stared at the computer screen, my anger grew watching my hands tremble over the keyboard, and for once in my life I felt sorry for myself. The question of why me, a question without an answer, played repeatedly in my mind.
I took in a deep breath, closed my eyes and I let my tremoring hands type and the words, “Happy birthday dumb-ass” were written across the screen. I laughed and let the words flow and Quaid Witherspoon, a famous artist, was born.
A man who had everything or so he thought, but now his hands had abandoned him and his life of painting had ceased, becoming a bitter man. I didn't plan the story of Quaid that night, but his character emerged from my mind and the story grew and my hands calmed, while I released the stress of the evening telling Quaid’s story, a journal of only two weeks of his life. The story of Quaid Witherspoon, the novel 'A Faded Cottage', became an incredible love story, one about strength of mind to fight fate and never accept what life throws at you. ‘A Faded Cottage’ is journal of a famous artist not of his life, but of only two weeks, a love story about aging and two people being reunited after thirty years finding love can conquer all.
Through this process of bringing ‘A Faded Cottage’ to life, I have learned so much and talking, listening to everyone’s stories so similar to mine has brought calmness to my life.
Essential tremor (ET) is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs, or trunk. About 10 million Americans have Essential Tremor and million more people worldwide. That's about 5% of all people in the United States. For comparison sake, 7.8% of the population have some type of diabetes. Most people though haven’t heard about Essential Tremor and I’m adamant to bring attention to the world.
I have become an activist to bring awareness to Essential Tremor and founded the Diann Shaddox Foundation, Non-Profit 501c(3) organization committed to help people struggling in today’s world with neurological conditions such as Essential Tremor, Dystonia, & Parkinson’s. DSF is dedicated to inspire, educate, enlighten, and increase awareness to the world about people living every day with neurological conditions such as Essential Tremor. 100% of the sales of 'A Faded Cottage' will go to the Diann Shaddox Foundation.
Please go to www.diannshaddoxfoundation.org and donate, every penny counts and will bring us closer to finding a cause and cure. DSF’s funds will be used for awareness and will be distributed for research to find the cause and a cure for Essential Tremor.
Now, 'A Faded Cottage' has become a vehicle to explain about Essential Tremor and how so many, over 10 million Americans and millions more worldwide including children, live each day with tremoring hands, head, voice, and entire body.
Diann Shaddox Foundation and I will make a difference even if it’s only letting a few more people around the world understand what Essential Tremor and movement disorders are.
My Journey with Essential Tremor
I was born 1947 in Hampton Hill, Middlesex, UK. At the age of three my mother took me to a dance class. From that day dance became my life, and I knew from an early age it would be my career. I left school in 1962 to work as a dancer. After taking my first teacher’s exam at 16, I opened my own dance school in 1964 teaching ballet, tap and modern dance.
During my 20s a tremor developed in my right hand, which was finally diagnosed as Benign Essential Tremor in 1974. The tremor was slight so it didn’t really bother me. My school continued to flourish with many pupils going into the dance profession. Although the tremors progressed slightly in my 30s and 40s, including now in my left hand, I was still able to teach. From the beginning I decided not to take medication, preferring to cope without, which I still do to this day. (Although this works for me, if you are on medication it is important not to stop without consulting your doctor or specialist first.)
During my early 50s a ‘no-no’ head tremor was diagnosed, especially in certain positions. For others with ET this could be a ‘yes-yes’ movement. The hand tremors progressed and became more noticeable on activities that up until that point had been manageable. Not being able to control the hands, teaching dance became difficult. This was particularly true with classical ballet, which requires precise arm movements with specific hand positions and good balance. I then had to make an extremely difficult decision; I stopped teaching and took early retirement in 2004. At the time it felt like the end of the world, as dance had been my whole life since the age of three years.
In 1995, while still teaching, a back injury led me to take up yoga. After a short period of time it became apparent that the benefits of yoga were not just for the injury. Even more importantly, it was noticeable that my tremors calmed down considerably during the relaxation part of the class. Unfortunately after a year the class changed to an unsuitable day, but by this time yoga was part of my daily routine. In 2002 I discovered another local Hatha yoga class, which I continue attending to this day. It is perfect for me, with a considerable amount of focus placed on the true essence of yoga, uniting the mind, body and spirit.
This class led me to research in more depth the properties and benefits of yoga, meditation and other complimentary therapies that would benefit my tremors. In 2011 I unexpectedly found myself being drawn to teaching meditation. My yoga teacher encouraged me to take a meditation teacher’s training course, which then enabled me to start teaching in her studio.
In 2012 Essential Tremor was diagnosed in my legs and jaw, and since then I have also been diagnosed with Bronchiectasis. In order to manage my day, I practise meditation, yoga, relaxation and breathing exercises first thing in the morning. Fatigue is a symptom of ET so it is important for me to pace my activities each day; this helps keep the tremors more under control, as too much activity or exertion can increase them. Being mindful and in the present moment is also invaluable to me. However, there are days when my tremors have a mind of their own and are a challenge, especially when applying makeup, eating, drinking or writing, and the leg tremors can affect driving and descending stairs.
Over the 40 years I have lived with ET, I am frequently asked: Why are you shaking? Do you have Parkinson’s? Are you nervous? It is frustrating when constantly being asked these questions. I hasten to add that this is no disrespect to the person asking, to which I always reply courteously, knowing that they simply have never heard of Essential Tremor! How can it be said to be the most common neurological movement disorder, but be the least known?
At the beginning of 2014 I discovered March was ‘ET awareness month’, when the International Essential Tremor Foundation asked people with this neurological condition to speak out about the condition. Since then I have taken every opportunity to raise and spread awareness of this life-altering disorder. Details of these and any forthcoming events plus other ET information can be found on my Facebook page:
Living Life with Essential Tremor
There is a saying: when one door closes, another one opens. How true this is for me. When the dance school door closed, another door opened to the path of meditation and raising awareness of Essential Tremor. So it could be said that I’m still involved with dance, now though the Dance of Life.
“Our path is sometimes rough and sometimes smooth; nonetheless, life is a constant journey…. whatever we do is regarded as our journey, our path. That path consists of opening oneself to the road, opening oneself to the steps we are about to take.” ~ Chogram Trungpa
You aren't alone in the stares
You look at yourself in the mirror, a quivering head and face stares back, you wonder who you are and why has this happened.
You look around a restaurant and believe that all eyes are on you, since you can’t hide your trembling hand as the fork rises to your mouth. Then you lift your glass to drink using both hands and the liquid splashes like ocean waves in a hurricane, wishing you could become invisible.
You look at people staring, as you stand in the checkout line of the grocery store trying to slide your credit card and sign your name, not able to hide your shaky hand.
You look at people around the doctor’s office or emergency room as you try to fill out forms, believing that all eyes are on your trembling hand as they scribble words on paper that no one will be able to read.
You look around a crowded room full of friends, coworkers, and clients and see the buffet table. You know that you can’t hold a plate in one hand and use the other to dip your food. Your plate would be like a kite in a heavy windstorm flapping in your hand.
You want to hide when well-meaning people come up to you and ask ignorant questions; “Why are you so nervous?” and the good one, “Stop shaking.” Well, you want to blurt out, “If I could stop shaking I would,” but you don’t say anything. Then there’s the other group of people that don’t ask, they just stare wondering if you’re on drugs, an alcoholic or just weird.
But, the answer of the stares is really simple, you have to face the stares, tell your story. Remember you aren’t alone; you are one of millions of people around the world that had Essential Tremor. We are a mighty group full of strong people, and with awareness the stares will diminish, maybe not entirely, but people will begin to understand. We will tell our story.
My Journey Part 2 Diann Shaddox Founder of DSF, journey of starting the Diann Shaddox Foundation
I’ve had many people ask me questions of why I started the Diann Shaddox Foundation. This is the continuing story and I hope it answers many questions.
My passion is writing and I had put off writing for years, excuses kept flowing, too busy, everyone will think I’ve gone crazy, so after many years of excuses, I did begin my journey of writing. I started in 2009 and began to write. Story after story emerged, “Legend of the Diaries” a Greek mythology, “Whispering Fog” a time travel romance, and “Miranda” a love story set in the late 1800’s, a journal of a young girl’s life.
However, my journey began one night when I wrote “A Faded Cottage” a SC love story about a man with Essential Tremor, out of frustration of my hands tremoring over the keyboard when I was working on one of my novels. That one night changed my life; I sat down at my computer and anger built letting “A Faded Cottage” come to life.
I put “A Faded Cottage” aside and kept editing my other stories to send to publishers, but “A Faded Cottage” kept pulling me in. I let friends read the manuscript and they believed I should go ahead and publish the novel to let others understand what I was living through with my tremoring hands. So began my journey. I gave in and sent the manuscript to publishers. To my surprise, I had a small publisher come back to me right away.
I stayed busy promoting “A Faded Cottage” through the summer and into fall. I was shocked, since I've had ET for over thirty years that no one knew what ET was. I asked everyone one question. “Have you ever heard of Essential Tremor?” and the answer 99% of the time was no, making me more determined to keep working. I knew something had to change.
The beginning of 2014 “A Faded Cottage” was now available in eBook, paperback and hardback.
I decided to give things a break and to keep moving on. But, once more I was confronted by people wanting to donate to me and ET, however they suggested that I start my own foundation and let my foundation give grants back to other foundations. I did research and many authors, like Nicholas Sparks, and many others start foundations so they can grant donations to other foundations. That keeps checks and balances equal.
However, the first of May, my life was jerked to a stop. My healthy young son went to the hospital with a headache. We learned he had an aggressive cancerous tumor in his brain the size of a lemon. He elected to have surgery and never woke and died on May 20, 2014.
My life now had changed and in June I sat back and reflected about my journey that had all started with one little book “A Faded Cottage.” How that one night on my birthday writing that book had sent me on a wild journey and I didn’t know if I wanted to continue. I had set out just to write my stories, but my life had turned into a whirlwind and now I had to make a decision.
I decided to take some time to think and I began the rewrites on “Whispering Fog” a time travel romance. My new editor and I finished “Whispering Fog,” hired a book designer and published the novel.
I don’t give up easy and knew my son would be disappointed if I didn’t continue with the foundation and learned it takes a while to get approved by the IRS. On August 29, 2014 the IRS approved Diann Shaddox Foundation and on October 16 it was added to the IRS data base.
What will my journey be in 2015? I have been adamant to make a change, bring awareness, and find a cure for ET. Why is DSF working to bring a cause and cure for all movement disorders, including ET, Dystonia, and Parkinson’s? I believe they are in the same family and we need medical research done on each of them to find a link. I decided that 100% of the sales of "A Faded Cottage" will go to DSF to help find a cure.
My light is growing dim, and my energy has grown low, however I will see what the future holds, and whether the flame will be distinguished or grow stronger to tell the world about ET. Many have said I’m begging for help, no not begging asking for support. There are many ways to support a foundation. Donate time to help with whatever you can, write articles, start a newsletter, help with IT services, so many ways to volunteer. Yes, it does take a lot of funds, to advertise, bring awareness, and grant medical research money to doctors, to make a difference.
I hope you will join me on my journey and if you have any questions that you’d like answered, I’d be glad to help. firstname.lastname@example.org
Sisters share the storms of dystonia, but also the rays of sunshine in their young lives
Movement disorders are not just for old people.
Northern Kentucky Voice: Your voice, your story
Jessica Noll Oct 26, 2014
UNION, Ky. – Curled up in a chair hiding her face, too nervous to sing, 4-year-old Olivia Phelps' nerves are getting the best of her, but eventually the words, “let it go, let it go” pop out of her mouth in sync with the movie “Frozen”.
Considering she couldn't speak or walk until she was 2, the simple feat is remarkable.
Olivia and her one-year-old sister, Madison, share a love of music and drawing. They also share a rare neurological movement disorder called dystonia. It’s not only a rare disorder, but incredibly rare to have two siblings suffering from it. When the storms of dystonia hit, they are painful and can last hours or days. Their tiny muscles tighten and their limbs become cramped with involuntary muscle contractions.
It’s a battle with the unknown they take on daily. A battle that their mom has made her mission to beat with awareness and fundraising for research. A mission she wants them to continue as they grow older because, while not fatal, dystonia's storms will never cease and can escalate.
“It’s a silent disease people can’t see all the time,” the Warsaw, Ky., mother of four said. “Medication isn’t a cure.”
Become a WCPO Insider to learn more about dystonia and what Melissa is doing for Madison and Olivia, and for other families like hers.
I Shake. So What! Part 2:
An Autobiography of the reality of living with Essential Tremor
By David Jensen
I tried once to see if there was any new medications for shaking. After a long talk with the Doctor, he said; “You only want to have drugs! Get out of here!” The sad part is, you can't tell an Officer to kiss your ass! Fast-forward to life as a civilian again.
I returned to Germany with my wife and child, and got a job. Where others have no problem, I learned to use little tricks
when measuring tools after grinding them. I also got more intelligent when it came to people making stupid remarks with comebacks like: “Sure I shake! Your wife loves it!”
I started my voyage through the various prescription medications, and also met lots of different Doctors! The first Doctor had me taken pills for the shaking. And I finally had a name! Never before had I heard a Doctor say what it is! So the pills were working some and at the same time, I was getting Asthma problems again. I figured it was because I was working lots in the garden! I was to increase the dosage to 250 mg. And that was when the big one hit me again! When the Emergency Doctor came to the house and pumped me full of cortisone, she said I can't take any Beta-Blockers with Asthma. It made click in my brain! When I asked her about Inderal, she said that it was one of the first on the market. So now I know what happened way back then as a teenager. My normal Dr. should have known it! I changed Dr's the very next day! Onward to see a neurologist, who in the course of time, had me try almost every drug available. Some make you so sleepy, you might as well be dead. Some don't do anything. And one made me so high and comical, that I got in trouble and got thrown out of the Dr's office. In the waiting room of my beloved neurologist, the speaker was covered with an artificial bush. Sitting next to me was a man who had a serious psychosis, and I mean real bad! The Dr. calls his name over the speaker, the man starts to flip out, and being stoned, I said; “The voices are coming out of the walls!” He ran out of the office screaming. And I was no longer a patient. He threw me out. Okay!
After a few days, the pills wore off and I returned to apologize for my actions. He refused to see me. I was the bad guy? It was the pills that he gave me!
What followed was a few years of simply shaking. Then, getting tired of it all again, it was back to the neurologist. “This medication is used for people with Parkinson's disease”. So, I tried it. I took one whole pill before we went to a dinner party, and I could hold a tiny coffee cup in between my fingers! Wow! Unlike the ones I had tried before, with these new pills, I had no idea that I was flying on cloud nine. The next day, I only took a half pill in the morning. Sitting in my party garage, I looked up at the pipe and thought; “Would the pipe hold me if I hanged myself?” But I could not even get out of the chair until late afternoon. Just sitting there, in the Land of Oz! When I told my Dr. about it, she stopped writing and looked real hard at me. Immediately realizing the danger in what I told her, I said; “Wait! Stop,Stop, Stop! I'm not a suicide patient! I love living! It's the stupid pills!” In Germany, if a Dr. thinks you are in danger of suicide, they can have you in the mental hospital within the hour. If you want to or not. Resistance means being handcuffed by the Police and they ride with you to the Institution. A very dangerous place to end up! She said that I should continue taking the pills, and that the depression and tired feelings would abate with time. Tried it, but with only ¼ pill, I was still walking on air! The problem what I can't understand is, why don't they prescribe a package with only 5 or 10 pills to see if they are effective? I pay for a package of 100 pills, end up taking maybe 3 to 5 of them, and the rest I have to throw away! So onward to a few other Neurologist. One tested me, and said he doesn't think that I shake at all! I asked him when was the last time he seen an Optometrist! Yeah, to get by in this world with the shakes, you have to sharpen your tongue!
Then, I decided to look into the prospect of having DBS (Deep Brain Stimulation). Went to the University Clinic in Tuebingen, reported at the reception desk, and took a seat in the front lobby waiting room. While I was waiting in the front lobby, sitting on a couch, the Dr. was observing me. Which I did not know till later, they first observe if a patient is simulating or not. So talking to the Dr. , I say that I only have it mostly in my hands, and he says; "and your head!" I said; "no, only my hands!" He then tells me that so long I was sitting, my head was bobbing from side to side and up and down! And I asked him, as I pulled my Mp3 player with earphones out of my pocket; "didn't you see I was Jamming to the tunes?"
He then started to talk about first trying one of the various medications before an operative procedure. I went into my recital of all the known medications and their horrible side effects, or no effects at all. Guess I stepped on the guys ego! “Who is here the Dr.? You or me?” He asked. “Just saving us some time!” I answered smiling. God in White stood up and told me I was wasting his time. “Pick up your prescription at the front desk on your way out!” I got my paper and went home. I had already found a new Neurologist, who A) knows all about ET, B) is very concerned about my condition and is always up to date on the latest research, C) always looks in his cabinet if he has a test package, so I don't end up paying for pills to throw away, and D) most important, simply takes the time to listen, not just hearing like most other Neurologist. He talks to me like a friend would. Honest!
So, I took my prescription to the pharmacy. They didn't have any of the 'cheap, inexpensive, no-name Primidone. I was not in a good state of mind and said; “If I don't take them and stop immediately, my liver will malfunction. Either I get the pills, or I have to go to the hospital to prevent a liver collapse!” So they gave me another brand of pills with the active ingredient Primidone. Mylepsinum. And I started to take the killer pills again. But now, I had no adverse side effects! Each day I increased the dosage till I found the right amount for me, and my body. At the next appointment with my Neurologist, I held out my hands and said; “Taa-Daa!” Shocked, he asked how that can be, or did I already have the DBS surgery. “”Nope! Mylepsinum!” I answered with a big grin. Smiling, he says; “The mind is a very strange place that we know little about!” Now I receive the correct pills all the time, because they write 'Aut Idem' on the prescription.
Since then, I have been able to type again, on my good days and with the medication. Of course, there are days when it seems not to work. But that is simply how it is with Essential Tremor! One good day and another not so good. I have been able to write a book, thanks to the “Porsche Primidone”! And on really good days, I can even manage to write with a pencil, so that others can read it. Now, I am too old to start learning the guitar again, but I can hold my glass in a restaurant like everybody else.
And for the little things, day to day, that I can do like a “Normal” person, I am very thankful!
12-year-old battles rare condition
Posted By: Camila Orti
A Lincoln boy is trying to live a normal life as he battles a rare brain condition.
12-year-old Thomas Casady is pretty mature for his age. The sixth grader enjoys cooking for his family, reading and playing golf. But there's something else that has made him grow up a little quicker than most kids.
"They diagnosed it as myoclonic dystonia, which is a really rare disease," Dad T.J. Casady said.
Thomas is battling constant muscle spasms that often lead to full-blown episodes.
"I can't breathe sometimes, I'll go into a seizure sort of thing," Thomas said.
The condition landed him in the Emergency Room on Sunday when a seizure didn't stop after more than two and half hours.
"I'm just mad that I don't know what to do or how to help it," Thomas said.
Plus, Thomas says he has a constant headache, a throbbing that hasn't stopped since May.
"It's every day, all day," Thomas said.
Parents Kristi and T.J. say their son was diagnosed eight months ago, but the condition has progressed. They're still looking for the right treatment to help him manage the pain.
"We just hope that he can enjoy life and not have to worry about what's going to happen next," T.J. said.
So for now, Thomas is taking things day by day, one recipe at a time.
"I'd love to have this go away but I can't so I have to try to not let it overcome me," Thomas said.
The family is hosting a fundraiser on Tuesday at Buzzard Billy's in the Haymarket from 4-10 p.m. View the event's Facebook page here.
I Shake. So What!
An Autobiography of the reality of living with Essential Tremor
By David Jensen
“You don't have to be afraid!” Looking down from where I was setting up an outside toilet on our yearly camping trip with the less fortunate children from the surrounding towns, the boy, who was approximately Seven said; “I'll protect you from the Bears”. It is times like these that one can only laugh at the circumstances. “No, I'm shaking because I have a sickness, that's all”. “Okay. Cool!” he says, and runs away. Children accept the simple things as they are. For the rest of the week, he would bring me coffee and help me with other things. Carrying the coffee was great and his willingness to help someone sick was honorable. He has since that time grown to adulthood. Has a father in law with MS, and to this day, still goes camping with the less fortunate every May. If only all the adults were so relaxed and open-minded about it!
My Essential Tremor started at the same time my voice changed. Between being laughed at by my middle brother, (who didn't inherit it), for shaking my milk all over the table and my voice cracking high and low, it was the start of my new (how wonderful!!) life as a shaker. My father had it also and my brother was smarter than to make a comment about it when he was around! Before I started out shaking, my older brother started to shake. Not as bad as the rest of us in the family, but he said something in the garage to my father about infecting him with the shakes, or something in that perspective. In those days, nobody knew that it really was inherited from one generation to the next, and sometimes passing one generation of family over completely. My father, in his ignorance of the fact, took it as an insult. And my brother paid a high price, for that which is nowadays, Status Quo knowledge.Guitar playing. I was good, really good. And I went with my father to all his friends when they got together to play, serious practice, or simply banging out the tunes for fun. I knew from an early age that I would master the Banjo and the Mandolin. The guitar was simple to play. Then came two things at one time. ET and Asthma. I had an inhaler for the bad summer months, and the Doctor started me on heavy doses of Inderal for the shaking. The inhaler made me shake more and the Inderal made me sleepy. I was now unable to concentrate on what and how to play on the guitar. My father, in his frustration that I was “losing it”, raised the guitar practice to at least one hour per day. After a few minutes of shaking the chords, I got more stressed and him too. It was the same thing everyday. “I shake too and I can play!” was his daily preaching. This went on for some time and one day I threw the guitar on the floor and said I can't play when I shake. Again his Sermon that he shakes and plays too! I remember I said something to the fact that he only strums the chords while Chet can pick the strings with ease. Got my ass beat for that comment! But he never said one word again about me playing the guitar, and he would never know how sad I was myself that I would never play a Banjo.
Looking back, the doctor who prescribed me the Inderal was light years ahead of his time! Beta Blockers are good against ET. But at the time, they had not enough research to discover that all Beta Blockers are harmful for Asthmatic patients. I found out the hard way, and maybe helped in the research? Who knows? I had cut the grass at the house and then I simply could not breath in. I ran and used my inhaler but to no avail. In the emergency room at the hospital, they were pumping everything into my arm to free up my lungs. I was just so tired of fighting for air, that I closed my eyes and exhaled. Next thing that happened was the nurse slapped me on the face and yelled that “nobody, but nobody dies on her shift” I had opened my eyes and took a big gulp of air, and she scared the hell out of me at the moment! In the wheelchair on my way out, the big black nurse gave me a kiss on the cheek and said; “A slap never hurt nobody honey!” The second time at the hospital was because my inhaler was empty and I was on a double dose of Inderal. But I was now hardly shaking! I remember riding in the ambulance, because that was so cool! And then I was waking up in the emergency room. The Doctor smiled and said; “We thought we had lost you for a minute!” In actuality, it was two minutes. According to my mother, I had not responded to an inhaler while in the ambulance. I had already stopped breathing in the ambulance and when we got to the hospital, apparently my heart had stopped. It explained why my chest hurt like elephants had run me over! After getting thoroughly checked out, I was to stop taking the Inderal, and see how it goes. From then on, I had very few problems with my Asthma. Only now and then when the farmers were doing Hay and such.
School was not a problem. Not to be conceited, but I have a pretty good brain. My mother forced me to attend Typing and Home Economics (Sewing and Cooking) classes. I had at that time, not reached puberty and was just as normal as a Non- Mover and Shaker. I'm thankful that she made me learn the 10 finger system, and although now my favorite key on my Laptop is the Backspace Key, I still have it in me, as one can see! But time rolls forwards and I hit puberty. But in those times, the teachers really didn't care about my handwriting, which went from good to shit, overnight. I took a Foreign Language class and choose German, just to aggravate my racist father. Mrs. Westrate was thrilled that I could learn so fast, and at the end of the school year, said that I should continue. “Why?” I asked. “I'm never going to need it! Not like I'm going to go to Germany or something!” That was a moment I will never forget! As will be revealed later on! In Chemistry I was doing just as good as the other classes, except when it came to the practical part. Shaking Acid all over the table, adding one chemical into the other too fast, the list of mistakes goes on and on. Theory = A. Practice = D. I loved being in Architect class. And I was really good at it! But at the end of the year, the teacher said that, although I was talented, I didn't need to go further into it. One of the test is to draw a straight line, six inches long, freehand! He said; “Your line would look like a heart frequency.” Sort of like: ' You could, but you can't'! In the 70's, they had no CAD/CAE with computers to draw the straight lines.
I got odd jobs at several restaurants and wanted to be a Waiter, due to the generous tips! But the first time I had the tray on my hand with empty glasses, so the manager could see if I could balance it without dropping everything, it was “Shake, Rattle and Roll!”. I got relegated to washing Pots, Pans and dish washing. A wonderful future awaited me in the world of employment! But being in the back kitchen with the cooks has its advantages and I brought unsold steaks and other goodies home every night! My father said that it was a super job for me at the Knightsbridge Inn. Of course! I was feeding the family with all the stuff I brought home. Then my friend said they needed help at the Greenhouses by J. Berends and Sons. Now, imagine trying to replant seedlings into pots while shaking, and that under time stress. It was required that you replant a certain amount in an hour. Well, over half of mine were broke off and I anyways couldn't keep pace with the rest. Damn shaking! There was no more J. Berends, he had passed away a long time ago and it was run by the three sons. Two of them wanted to fire me, but the third argued that “Dad shook like hell and he started the business! Give the boy a chance!”
So, I figured it would be as bad as washing dishes. But much to my surprise after a while I was like a foreman, driving the Forklift, making sure the orders got out on time and such. Much to the displeasure of my schoolmates which had worked lots longer there. I even got my own key to the place because I was the only kid who would show up everyday and open the greenhouses, make potting soil in the old cement mixer on Saturday evenings, and utilize the Nicotine smoke bombs in the greenhouses on Sundays. If I had not made a dumb decision with my life, by joining the Army, I found out that the three sons wanted to make me a partner. And all three had nobody for inheritance, so I would more than likely have inherited it all. Sometimes, we take a wrong turn in the road of life!
In May of 1977, I joined the Army. I spent more than twice as much time practicing how to dismantle and reassemble the rifle, and still was not fast enough for the Drill Sergeant. I think that he fell in love with me and my shaking. Shaving was mandatory everyday, and the smaller of the two Drill Sergeants just loved to pat me on the cheek every morning and make stupid comments like; “We should give you a straight razor! You could slit your throat open the first time around!” About half way through the six weeks of Basic Training, another soldier, an Indian, told me I should have used the dummy blade which comes attached to the razor! “Why couldn't you tell me that the first day here?” I asked. Running the dummy blade over his face and scraping the foam off, he answered; “You pale faces are much smarter than us!”
Well, one can only take so much harassment and towards the end of the six weeks, I got in the circle with the small Drill Sergeant. Every Sunday afternoon, we would go to a sand pit circle and get our aggressions out with whom ever we had a problem with. No matter how many times he knocked me down, I got back up and never said stop. After a while, he told me to stay down or say stop because; “I'm going to end up killing you and I have all the damn red tape on my hands boy!” Barely on my feet and bloody as hell, I said; “At least I won't shake no more and you can't bitch anymore either!” He stared for a second, laughed, and walked away from the circle. Maybe he learned a lesson that day. I know I sure did! To hell with what the others think of my shaking, and never give up!
Onward to Technical Training school. Oh what fun!! I had always loved to work on cars, so I choose the Mechanics Training. Most of the studying was easy, but then it came to hands on and, “Look out!” Adjust the timing on a running motor, and as soon as I had the long screwdriver in my hand, I shook so bad it fell out of my hand into the running motor. I reacted as fast as I could and fell backwards from the truck onto the floor, and the screwdriver kept getting caught in the fan belt. After bouncing around in the motor compartment, (luckily not flying out and hurting anyone), it went straight through the water hose. Boy, did I get to hear it! But when it came to body repair, I was the fastest sander around!
Sandpaper in hand, tighten the muscles and let the ET do the rest! The forms we needed to learn about was easy and we didn't have to fill any out as samples or, at the end of the schooling, as part of the test. Thank goodness! At the end of the Technical school, you had to fill out a form on where you would like to be stationed at. I filled in my two wishes: California or Hawaii. Either they couldn't read what I wrote, or the 'Wish List' was nothing more than a joke on us! Receiving my orders, I read Germany! Oh super! But now we fast-forward to being stationed in Germany.
New environment, new people and of course, new stress factors! Super! One of the first things they did is initiate me to the company by taking me down to the Chicken Stand! The initiation is; how many chickens can you eat? Regurgitating not allowed! I got bullied with; “Shaking the meat off the chicken isn't allowed either!” But after 3 and a half roasted chickens, my body was shaking like a leaf!
Alcohol is great at reducing the tremors, but only so long you are intoxicated. The morning after is when tremor says; “Well, you had a break from me last night, but I'm back again! Let's catch up on what you missed!” The whole paperwork which we had only theoretically learned at school, now had to be put into practice at work, and I was a professional in scribbling undecipherable things on the forms. Got a lot of flak about my handwriting at the beginning, but in time, it wore off and became the norm.
Then I got to do a really cool job which wouldn't be hampered by my shaking. My commander volunteered me to be the Colonels Chauffeur. Nice job, if you like driving for hours without a radio. Sitting in the Limousine and waiting for hours till a conference is finished is Boring!! This was though, an important connection. The Boss and me were talking while driving to the Firing Range and I said I would like to learn how to do explosives. Didn't think anything more about it, until one day I was relieved as Chauffeur with orders to attend a school for explosives training. Bound to fail from day one because of shaking, but I guess the Colonel wanted to do me a favor!
Well, I learned it all, and I thought that it is perverse that my body would go quiet when setting blasting caps in C4. So, due to my fluency in the German language, I later got to train NATO troops from different countries on how to utilize C4 and other neat explosive devices. During one course, I was teaching how you could form C4 Plastic explosives and I said; “You can form it like clay.” When the soldiers from Holland were finished mounting it on a tree, as a demonstration on which way it should fall, I said; “Okay. Hit the button!” When the tree exploded and fell over, the guys from Holland were shaking badly! They actually thought it was simple clay, and not real charges! And, sometimes it is so sweet to have the opportunity to say; “You're shaking worse than I do!”
Or the one and only time teaching NATO's how to properly throw hand grenades. All went well till one was shaking so bad, he pulled the pin and let it fall out of his hand. At our feet! With one hand, I pushed him to the ground, and with the other, scooped the grenade over the barrier. I refused to teach grenades anymore because he shook worse than me! At the Pistol Range, it was basically the same story. The Germans shoot a 9mm pistol, which turns sideways in the hand when firing. The first German Officer then played “John Wayne” and held the US Colt 45 at arms length, despite my warning him that it kicks back. He shot, the pistol slammed him in the face, and he was really quiet. But the next one was hilarious! Holding the pistol with both hands, but shaking to the point of dropping the thing on the ground. I was on the sidelines, getting stomach cramps from laughing at the shaky German. Sometimes, I get a mean attitude when I see “Normal” people shake.
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
I have trouble with shaving and holding any drinks. My biggest one is I work at a big retail store and when a customer comes up with CD/DVD's we are told to open them up and take out the disk. I have tried but I kept dropping them, so now I tell the customers that I am sorry I don't take them because of my shaking hands. So far they are happy with that.
Charles Schulz was the creator of the peanuts cartoons. He was born November 6, 1922 in Minneapolis Minnesota. The peanuts cartoons were published in 2,600 newspapers, translated into 21 languages so it reached 355 million viewers.
Charles was born in Minneapolis, Minnesota on November 6, 1922. Schulz's parents were Dena (Harverson) and Carl Schulz. He was an only child. He attended kindergarten in 1928 at Mattocks School were his teacher encouraged his first drawings. In 1934 the Schulz family gets a black and white dog named Spike, he was a black and white mutt.
In 1936 Charles entered high school at St. Paul Central High School. Charles had a job as a caddie for Highland Park Golf Club. In 1937 was when Charles's first drawing was released. It was a sketch of Spike that was contributed to the February 22 panel of the newspaper comic called " Believe it or Not " by Robert Ripely. In 1940 Charles graduated high school and his drawings submitted to the senior year book are declined.Mr. Schulz drew ''Peanuts'' for nearly half a century. He swore that no one else would ever draw the comic strip and he kept his word. For years he drew ''Peanuts'' with a hand tremor.
In the 1980s Schulz complained that "sometimes my hand shakes so much I have to hold my wrist to draw." The hand tremor affected Schulz's signature, but most people didn’t have any idea. The hand tremor led to the erroneous assumption that Schulz had Parkinson’s Disease. However, according to a letter from his physician, placed in the Archives of the Charles M. Schulz Museum by his widow Jean Schulz, he had Essential Tremor. Despite this, Schulz insisted on writing and drawing the strip by himself. However, his decision in 1988 to abandon the strict four-panel format in his daily strips, which he'd used since Peanuts began, is reported to partly have been an attempt to gain more flexibility, as he then could do some one-panel strips, which took less time to draw than four panels.
On the morning of Sunday, February 13, 2000, newspaper readers opened their comic pages as they had for nearly fifty years to read the latest adventures of Charlie Brown, Snoopy, and the rest of the Peanuts Gang. This Sunday was different, though; mere hours before newspapers hit doorsteps with the final original Peanuts comic strip, its creator Charles M. Schulz, who once described his life as being “one of rejection,” passed away peacefully in his sleep the night before, succumbing to complications from colon cancer. It was a poetic ending to the life of a devoted cartoonist who, from his earliest memories, knew that all he wanted to do was “draw funny pictures.”
To learn more about Charles Schulz and “Peanuts” go to http://schulzmuseum.org/
Dale, age 52 by HopeNETAdmin
Dale’s symptoms started around age 40 when he noticed a tremor when his hands were in motion. It was initially sporadic and he would shake more at times than at other times. By his late 40s the tremor had become worse, he noticed his fingers would tremor, and he believed anxiety and caffeine made it worse, but not always.
His left hand was worse than the right. In Dale’s family his father had essential tremor and his sister has it mildly.
Dale saw a neurologist for a diagnosis at the age of 42 and was told it was benign essential familial tremor and it was nothing to worry about health-wise but it could be a nuisance. He was prescribed Primidone which did not work for him. Since then, for 8-9 years, he has been taking Propranolol. He was also prescribed medicine for anxiety which runs in his mother’s family and takes Clonoxopan as needed (hasn’t taken it for a couple of years).
He does not think his ET was a result of any trauma and does not have other movement disorders, but he did experience a softball injury and underwent surgery, had scarring, and then years later a seizure which indicated abnormal electrical activity, but he was told this was not related to his ET. He has no unexplained symptoms that could relate to ET.
Dale does get self-conscious and embarrassed when others see his tremor and while they might be understanding of the condition, they wonder if the shaking means he is nervous. He says his writing is a scribble. He’s been told exercise can help and alcohol can help but knows alcohol is not the solution. He experiences frustration but not depression, counting himself fortunate to look at the bright side of life.
He wonders why there aren’t medicines that really work .. the Propranolol he takes does not work completely.
Interviewed by Lisa Gannon
Personal Stories – Sheila, age 70
Sheila, age 70
Sheila’s tremor started with a couple of episodes while living in Korea around 2006. She went to the emergency room – they did an EEG but symptoms had gone away by the time the doctor saw her. She remembers trying to sleep and feeling the tremor start, without knowing why. Seems when she gets urinary tract infections, it triggers the tremor. If she gets busy in the morning and can’t find time to eat, the tremor gets better. She saw a neurologist for the first time in 2010, and Propranolol was prescribed. Besides Propranolol she has had other prescriptions but has taken nothing that she’s been comfortable with. She gets angry about the tremors sometimes wondering, “why is this happening to me” and feels sorry for herself. Her hands started trembling first then her lip started trembling … emotions such as those caused by relationship conflict are a trigger for a tremor episode. She takes Clonazapam, prescribed for depression she attributes to the tremor.
Less than a year ago she was diagnosed with Parkinson’s and started taking medicine for that. She also takes Zanax which was prescribed for anxiety related to the tremor, and it is the only medicine that really has helped her tremor. She feels she’s been around the mulberry bush several times with doctors trying to see if something will work.
None of her friends or family has acted adversely to her tremor.
I wanted to add this story. It isn't all adults who suffer with ET. This is about Nathaniel one child's struggle.
Hi. My name is Crystal. 3 years ago we noticed my youngest son who was 2 at the time was tilting his head a lot and his hands would shake. I took him to the Dr. who then referred us to a Neurologist at Children s hospital in Seattle. Nathaniel had an MRI done and it was determined that he has Essential Tremors. My Mom has them too, but she doesn't call them essential she just calls them Familial. Nathaniel was 2 when he was diagnosed. He is now 5 and because he is in kinder we are noticing he is struggling more and his hands and arms are tremoring more frequently. His Dr. sent another referral to Children s Hospital and village(closer to our home) and he will most likely have another MRI done.
A year ago we had him tested for special ed because he was having some behavior issues, the only thing he qualified for was O.T. But the lady could only see him when I was at work. I work 3 hours a day. LOL So we had to withdrawl.
We had him tested again for O.T. this year and he didn't qualify by 2 points.
Well a few weeks ago his tremor was pretty bad, where most his body was shaking. the school nurse called me and his teacher was staying with him. This caused me to be more worried. ANd push more. We are now trying to get him a 504 plan so they can make accommodations for him at school. Things like writing, drawing, eating, grabbing are hard for him and stressful. He can do it but not always in the time they want.
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