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.
What is essential tremor?
Also known as, familial tremor, benign essential tremor or hereditary tremor, 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. 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 we are adamant to bring attention to the world
An estimated 10 million Americans have ET. People with ET are often stereotyped as being nervous, withdrawn, anxious, and elderly.
ET is not confined to the elderly. Children and middle-aged people can also have ET. In fact, newborns have been diagnosed with the
There is evidence that ET is genetic. Each child of a parent who has ET has a 50% chance of inheriting a gene
that causes the condition. However, sometimes people with no family history of tremor develop ET.
Can I Be Cured Of Benign Essential Tremor?
There is currently no cure or any specific laboratory test for Essential Tremor but the severity of the shaking, in many cases, can be reduced with the use of prescribed drugs. The treatment of Essential Tremor depends on the severity of the tremors and the impact they have on the quality of life of the patient.
Prescribed drugs to reduce the shaking include Beta Blockers, tranquilizers, or anticonvulsant drugs used to control epilepsy but these do not work for all patients.
The medications most commonly prescribed to control Essential Tremor are Primidone, an anti convulsant and Propranolol, a beta blocker more commonly associated with heart conditions and high blood pressure. Propranolol has been extremely effective in my case and so far has had no adverse side effects, however, it is known that patients with certain illnesses such as asthma, diabetes or heart problems may not be able to take drugs prescribed for tremor. Reducing caffeine intake and reducing stress levels, avoiding extreme temperatures and even using wrist weights to strengthen muscles is said to help.
Botulism toxin injections (Botox) are sometimes administered into the affected muscles in more severe cases. In a patient with a hand tremor the botulism would be injected into the forearm while botox would be injected into the muscles of the neck for a head tremor.
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.
Diann Shaddox Foundation for Essential Tremor Blog
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