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?
Essential tremor (ET) is when you have uncontrolled shaking movements in parts of your body - most commonly the arms and hands. It tends to occur in families. It is mild in some people but can become severe, debilitating, and demoralizing. 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.
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. Most people though haven’t heard about Essential Tremor and we have to educate schools, first responders, and even medical personal.
Essential tremor usually starts in one hand or one of your arms. Within 1-2 years, the other hand/arm is likely to be affected and it may spread to involve the legs, head, and voice. It can sometimes become quite severe so that everyday activities such as holding a cup can become difficult. ET isn’t only a social problem it can interfere with all aspects of your life like walking and speech can become difficult when your voice quivers so you have trouble talking. Loss of your abilities is hard to have a purpose in life. The tremor is usually not there at rest but becomes noticeable when the affected body part is held in a position, or with movement. The tremor can be present at all times and may be worse with stress, tiredness, hunger or certain emotions such as anger. Extremes in temperature may also make the tremor more severe.
What causes essential tremor?
Essential tremor is known to run in families. At least 5-7 out of 10 people with essential tremor have other members of the family with the same condition.
Up to 7 in 10 people with essential tremor find that the tremor reduces after drinking some alcohol.
How is essential tremor diagnosed? There is no test to diagnose essential tremor. Your doctor can usually diagnose essential tremor based on your explanation of the tremor and an examination. It is important for the doctor to make sure that there are no other conditions present that are causing tremor. In some cases, this may mean that you need to have some tests to rule out other conditions. For example, blood tests or a brain scan. You may also be referred to a neurologist (a doctor with a special interest and expertise in the brain and nerves).
While the diagnosis of ET remains a visual one, certain brain scans Magnetic Resonance Imaging (MRI) and Computerized Tomography (CT) may be helpful in eliminating any other conditions which also produce tremor as a symptom. For example growths such as tumors or damage to the brain can be seen on certain brain scans. Blood samples may also be taken to rule out thyroid or copper metabolism problems, both of which can cause tremor. DATScan a diagnostic test can distinguish between ET and tremors of Parkinson's disease.
Other conditions that can cause tremor and need to be ruled out include a side effect from some prescribed medicines, anxiety, caffeine, some poisons, kidney, liver disease, thyroid disease, Parkinson's disease and other movement disorders.
What is the treatment for essential tremor? Essential tremor cannot be cured. Treatment may reduce the severity of the tremor. There are various treatments that are used.
Medication There are two medicines used initially for essential tremor - propranolol and primidone. These medicines have been shown to ease the tremor in up to 8 in 10 affected people.
Propranolol - this is a medicine that is usually used in heart disease. It is in a class of medicines called beta-blockers. It has also been shown to be effective in essential tremor. This medicine should be used with care if you have a heart conduction problem or a lung disease such as asthma. The most common side effects with propranolol are dizziness, tiredness, and nausea (feeling sick).
Primidone (Mysoline), - this is a medicine that is primarily used for epilepsy, but it also works very well in essential tremor. The most common side-effects are sleepiness, dizziness and nausea. These may improve if you continue to take this medicine.
OnabotulinumtoxinA (Botox) injections. Botox injections might be useful in treating some types of tremors, especially head and voice tremors. Botox injections can improve tremors for up to three months at a time.
However, if Botox is used to treat hand tremors, it can cause weakness in your fingers. If it's used to treat voice tremors, it can cause a hoarse voice and difficulty swallowing.
When the diagnosis of essential tremor is made, you may be offered one of these medicines. A low dose is usually started at first, and gradually increased until your tremor is eased. If you reach the maximum dose without a satisfactory improvement, then the other medicine can be tried. If that also doesn't work, you can try them together. Other medicines can be tried if these two are not effective. A wide range of medicines have been shown to have some effect on reducing the severity of the tremor.
Surgery If medicine treatment is not effective, and the tremor is severe, then a surgical procedure may be an option. There are two main surgical procedures that may be considered - thalamotomy and thalamic deep brain stimulation. They both involve the thalamus. This is a deep part of the brain that organizes messages travelling between the body and brain. High intensity focused ultrasound waves precisely target a focal point in the Vim nucleus of the thalamus can also be used.
What is Exablate Neuro?
High intensity focused ultrasound waves precisely target a focal point in the Vim nucleus of the thalamus, the tiny part of the brain that is thought to be responsible for causing tremors. The Exablate Neuro ultrasound transducer consists of 1024 beams that generate enough heat to ablate the targeted tissue during treatment. The result is an immediate and significant reduction of tremor for patients.
During planning and treatment for essential tremor, the patient is fully conscious and lying on the treatment bed in an MRI scanner. MRI provides high resolution visualization, patient-specific treatment planning and continuous monitoring of the procedure. Real-time thermal feedback allows the physician to control and adjust the treatment, ensuring that the targeted tissue is completely ablated without impacting adjacent healthy tissue.
This revolutionary, non-invasive treatment offers a life changing treatment to patients with essential tremor.
Difference in focused ultrasound:
MINIMAL HOSPITALIZATION and short recovery time
SHARP, ACCURATE Lesions as small as 2mm, no penetrating trajectories, no implanted hardware, no ionizing radiation, less risk of infection.
REAL TIME MRI guidance for targeting and thermal feedback, with immediate results
Thalamotomy -in this procedure, the thalamus on one side of the brain is destroyed. It has been shown to be very effective. It stops or greatly reduces the tremor in up to 9 out of 10 people with essential tremor. There are risks involved such as a bleed into the brain. Potential side-effects include muscle weakness, speech problems and memory loss. If the thalamus on both sides of the brain is destroyed, there is a higher chance of side effects. This is not usually recommended.
Thalamic deep brain stimulation- this procedure involves placing an electrode (fine wire) into the thalamus on one or both sides of the brain. The electrode is connected to a device called a stimulator. The electrode and stimulator stay in the body. (The stimulator is placed under the skin at the top of the chest.) The simulator sends electrical impulses down the electrode to the thalamus. It is not known exactly why this device works. It seems to interrupt or block the nerve signals coming through the thalamus that cause the tremor. If you have this procedure, you will need to have regular reviews to make sure that the stimulator setting is correct. This aims to minimize side-effects and maximize benefit. It may produce a good response in up to 9 out of 10 affected people. Again, there is a small risk that the procedure may cause a bleed into the brain. Side effects include loss of sensation, speech problems, and weakness. These usually resolve when the stimulator settings are adjusted.
Botulinum toxin injections. There is some evidence that Botox injections are helpful in reducing certain tremors. Unfortunately, a Botox injection into the arm also produces weakness of the arm. This is usually not tolerated. It is mainly useful when essential tremor affects the head and neck.
Alcohol - Many people find that alcohol is helpful in reducing their tremor. It needs to be used with caution to avoid developing an alcohol problem. It is not advisable to drink more than the normal recommended amount of alcohol. That is: men should drink no more than 21 units of alcohol per week, no more than four units in any one day, and have at least two alcohol-free days a week. Women should drink no more than 14 units of alcohol per week, no more than three units in any one day, and have at least two alcohol-free days a week. Pregnant women, and women trying to become pregnant, should not drink alcohol at all. One unit is in about half a pint of normal strength beer, or two thirds of a small glass of wine, or one small pub measure of spirits.
Avoid caffeine. Caffeine and other stimulants can increase tremors
Stress and anxiety Stress and anxiety tend to make tremors worse, and being relaxed may improve tremors.
What is the outlook? Essential tremor is a progressive disease. This means that it tends to gets worse over time. There needs to be more research on the cause to find more medicines that work for ET and to find a cure.
What is it like to live with Essential 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.