ET Stories
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No one knows ET like some who lives with it
Share your story!
As people living with Essential Tremor and their loved ones know, you are — and often must be — your own best advocate. By sharing your story, you play a critical role in helping bring awareness and fund research toward a cure and ensuring there are programs and support for our ET community. #unite4et
“Alone we are ignored. Together we are Strong”
My Name is zac
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My story Stephen
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Dee Wallace
Dee Wallace, who has worked as an author, teacher, dancer and actress in film, television, and stage for over 40 years, the mother in Steven Spielberg’s movie “ET,” is an Ambassador for Diann Shaddox Foundation for Essential Tremor
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My Journey with et-doris aldrich smith
Ten million people in the United States shake due to essential tremor. It is a syndrome with no cure yet. Medications and procedures can calm some tremors, but not all. Those of us with ET have to learn to live with it and find unique ways to deal with it.
My essential tremor reared its ugly head during my freshman year at college. No insecure, very shy, introverted girl wants to hear a voice behind her say, “Hey, girl, what’s wrong with you? Are you scared?” No, I wasn’t scared, just having a tremor beginning from an unknown source and terribly embarrassed. As with most cases, my ET progressed. My head shivered back and forth as if I were constantly telling everyone, “No, no.” Nevertheless, I incorporated it into my life and prayed each day that IT wouldn’t be noticeable or IT would go away. |
I got married, had a daughter, taught school for twenty-seven years, and at the age of 48 retired early and enrolled in seminary. Not because I wanted to become a student again, but because God was calling me. After graduation I was ordained and pastored in six different churches in twenty-four years. Yes, I stood in front of classrooms and congregations to teach and preach. I explained ET, but didn’t dwell on it. Sixty years of tremors in my head and now it is starting in my hands. Many of you can relate to that.
One of my most embarrassing ET moments was at age 75 sitting next to my 104-year-old mother-in-law at her assisted living home. We were listening to an older man entertaining the small crowd with music. After a short time he told everyone to lift their hands and sway them side to side. My mother-in-law and I chose not to follow the instructions. He looked at me, saw my essential tremor head indicating no, no, and he stopped singing. He said, “No, we can’t do that! She says no.” I tried to hold my head steadier with little success. Several more times he stopped and pointed at me, so everyone turned to stare and see who was “disobeying.” Embarrassment and a little bit of anger. After the performance I did talk to him quietly. It may have embarrassed him, but I hoped he would not do that with anyone else in his audiences. Ten years ago I would have kept quiet and told myself to “suck it up, cupcake.” Not anymore.
Do you wonder why we don’t see many others with essential tremor in stores or on the sidewalk? Where are the other 9,999,999 of us? The best place to find others is in a support group.
One of my most embarrassing ET moments was at age 75 sitting next to my 104-year-old mother-in-law at her assisted living home. We were listening to an older man entertaining the small crowd with music. After a short time he told everyone to lift their hands and sway them side to side. My mother-in-law and I chose not to follow the instructions. He looked at me, saw my essential tremor head indicating no, no, and he stopped singing. He said, “No, we can’t do that! She says no.” I tried to hold my head steadier with little success. Several more times he stopped and pointed at me, so everyone turned to stare and see who was “disobeying.” Embarrassment and a little bit of anger. After the performance I did talk to him quietly. It may have embarrassed him, but I hoped he would not do that with anyone else in his audiences. Ten years ago I would have kept quiet and told myself to “suck it up, cupcake.” Not anymore.
Do you wonder why we don’t see many others with essential tremor in stores or on the sidewalk? Where are the other 9,999,999 of us? The best place to find others is in a support group.
After my second retirement, I began in earnest to write fiction books. I have two fictional series, several stand-alone books, devotionals and Bible studies, and one children’s picture book.
The newest book which will be available on April 10, is Why Is It Essential? I Want to Know. (Insights from Those with Essential Tremor.)
This book is informative and shares personal insights from people around the U.S. who live with ET. The book will be available at amazon.com for $8.99. Go to the author page for Doris Aldrich Smith to find the complete list.
The newest book which will be available on April 10, is Why Is It Essential? I Want to Know. (Insights from Those with Essential Tremor.)
This book is informative and shares personal insights from people around the U.S. who live with ET. The book will be available at amazon.com for $8.99. Go to the author page for Doris Aldrich Smith to find the complete list.
Diann Shaddox
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My Journey with et Mary D
I first noticed my right eye lid twitch at age 27.. As years progressed the head began to shake more visibly when I was angry or upset.
I often wonder how big a part that stress adds to our nervous system. Over the years I had plenty of emotional and verbal and financial abuse, I am sure that did not help. One day I accidentally fell backwards down the stairs, held myself from somersaulting by grabbing the railing, in the process I felt my spine from the tailbone to the back of my skull twist. From that day forward, the head tremor has progressed. |
As I journeyed thru my 50’s, I am now tremoring more internally as well.. I recently have noticed in the morning my jaw wanting to chatter like I am cold. I do notice both my arms and hands tremor some when holding onto something or trying to be precise.
I first noticed my right eye lid twitch at age 27.. As years progressed the head began to shake more visibly when I was angry or upset.
I often wonder how big a part that stress adds to our nervous system. Over the years I had plenty of emotional and verbal and financial abuse, I am sure that did not help. One day I accidentally fell backwards down the stairs, held myself from somersaulting by grabbing the railing, in the process I felt my spine from the tailbone to the back of my skull twist. From that day forward, the head tremor has progressed. As I journeyed thru my 50’s, I am now tremoring more internally as well.. I recently have noticed in the morning my jaw wanting to chatter like I am cold. I do notice both my arms and hands tremor some when holding onto something or trying to be precise.
Family History: My youngest son_ ET and dystonia. Father’s Father- Diagnosed with Parkinson's Disease
Mothers Sister- Diagnosed with Parkinson's. I did have a cousin on my Moms side that had essential tremor. He was in Vietnam War, and was beaten by his Dad when he was young, again, I wonder how all this plays into our nervous system.
I do wonder back in the 60 and 70‘s if all that shook was classified as Parkinson. The need to educate is tremendous. The part that I dislike the most, is the bullying from other people. The stares, the laughs, the snide remarks, their cold hearted attitudes..
One day I prayed to God to lead me to how I was to handle this, I had been reclusive, did not go shopping or out to eat anymore with my husband or family. It was easier for me to deal with it..
But, at the same time, it seemed very unfair.. I was playing around on the computer and typed in Essential tremor support groups and found a few. I thought to myself, I wonder how many others have this? I thought, hmm, I have commercial advertising experience and I can run a free article, so I marched forward with that idea.. I needed to know I was not alone, and how they handled it, wondering perhaps we may get together one day, and make friends?
Little did I know that I would have calls from several counties in upstate NY, one conversation led to another, others were interested to getting together as well, we planned a time and place to meet. How exciting, in public, and I didn't care as much, as I would not have to face this alone.. We decided as a group to educate and help others . We were added to a support group listing, the phone rang one day, several calls in fact from the NYS downstate area. From Brooklyn, Manhattan to the Long Island area. Our local support group kept coming up with more ideas, as we together in strength felt good about ourselves and we were making a difference, yes, it is empowering in a great way, turning a negative to a positive.
AS a group we invited professional medical speakers, we set up at health fairs, in the bigger cities, we did educational seminar educated EMS and beyond, as well as doing fundraisers and distributing literature as we go..
I do not tell you this for glory, I share this with you for inspiration and empowerment.
We did this for over 5 years, It was getting to a burn out stage, my life had grandchildren to babysit etc, to I needed to shelf the group for a while.
My husband retired, we moved to Florida, thinking Ahh, this is great, finally bask in some sun. Little did we know the DMV is very strict about others with tremor, I was denied my driver’s license, I was just stripped of my independence. To find out I was not the only one singled out. By coincidence, my husband was out to breakfast and was sitting near 3 guys that were chatting about ET, one of the gentleman also had ET and had also been rudely, and humiliated by the employees of the DMV office.
There is a great need for educating, how can we do this? Together, strength in numbers, lets put our thinking caps on and make a difference, we CAN do this for ourselves and for future generations to come...This can be part of our legacy.
PLEASE contact the Diann Shaddox Essential Tremor Foundation for additional information. There are so many great programs, where they need our help.
Once we return to NYS (Our home state) I still kept my driver’s license, that I have had for 52 years, and will again be independent, I will know when it is time to let them go…
For myself, my plans .along with my husband and family support, is to start a support group again, and educate, I want to focus additionally on the bullying aspect, and work with legislation to try and educate the state and federal levels.
It’s an uphill battle, BUT, it needs to be done..
Will you join me in this journey in your area?
God Bless us all.
A wonderful Thank You to Diann Shaddox and her staff and all their hard work.. Proud to be part of a great Group and foundation..
Mary D. is a member of DSF Patient Council
I first noticed my right eye lid twitch at age 27.. As years progressed the head began to shake more visibly when I was angry or upset.
I often wonder how big a part that stress adds to our nervous system. Over the years I had plenty of emotional and verbal and financial abuse, I am sure that did not help. One day I accidentally fell backwards down the stairs, held myself from somersaulting by grabbing the railing, in the process I felt my spine from the tailbone to the back of my skull twist. From that day forward, the head tremor has progressed. As I journeyed thru my 50’s, I am now tremoring more internally as well.. I recently have noticed in the morning my jaw wanting to chatter like I am cold. I do notice both my arms and hands tremor some when holding onto something or trying to be precise.
Family History: My youngest son_ ET and dystonia. Father’s Father- Diagnosed with Parkinson's Disease
Mothers Sister- Diagnosed with Parkinson's. I did have a cousin on my Moms side that had essential tremor. He was in Vietnam War, and was beaten by his Dad when he was young, again, I wonder how all this plays into our nervous system.
I do wonder back in the 60 and 70‘s if all that shook was classified as Parkinson. The need to educate is tremendous. The part that I dislike the most, is the bullying from other people. The stares, the laughs, the snide remarks, their cold hearted attitudes..
One day I prayed to God to lead me to how I was to handle this, I had been reclusive, did not go shopping or out to eat anymore with my husband or family. It was easier for me to deal with it..
But, at the same time, it seemed very unfair.. I was playing around on the computer and typed in Essential tremor support groups and found a few. I thought to myself, I wonder how many others have this? I thought, hmm, I have commercial advertising experience and I can run a free article, so I marched forward with that idea.. I needed to know I was not alone, and how they handled it, wondering perhaps we may get together one day, and make friends?
Little did I know that I would have calls from several counties in upstate NY, one conversation led to another, others were interested to getting together as well, we planned a time and place to meet. How exciting, in public, and I didn't care as much, as I would not have to face this alone.. We decided as a group to educate and help others . We were added to a support group listing, the phone rang one day, several calls in fact from the NYS downstate area. From Brooklyn, Manhattan to the Long Island area. Our local support group kept coming up with more ideas, as we together in strength felt good about ourselves and we were making a difference, yes, it is empowering in a great way, turning a negative to a positive.
AS a group we invited professional medical speakers, we set up at health fairs, in the bigger cities, we did educational seminar educated EMS and beyond, as well as doing fundraisers and distributing literature as we go..
I do not tell you this for glory, I share this with you for inspiration and empowerment.
We did this for over 5 years, It was getting to a burn out stage, my life had grandchildren to babysit etc, to I needed to shelf the group for a while.
My husband retired, we moved to Florida, thinking Ahh, this is great, finally bask in some sun. Little did we know the DMV is very strict about others with tremor, I was denied my driver’s license, I was just stripped of my independence. To find out I was not the only one singled out. By coincidence, my husband was out to breakfast and was sitting near 3 guys that were chatting about ET, one of the gentleman also had ET and had also been rudely, and humiliated by the employees of the DMV office.
There is a great need for educating, how can we do this? Together, strength in numbers, lets put our thinking caps on and make a difference, we CAN do this for ourselves and for future generations to come...This can be part of our legacy.
PLEASE contact the Diann Shaddox Essential Tremor Foundation for additional information. There are so many great programs, where they need our help.
Once we return to NYS (Our home state) I still kept my driver’s license, that I have had for 52 years, and will again be independent, I will know when it is time to let them go…
For myself, my plans .along with my husband and family support, is to start a support group again, and educate, I want to focus additionally on the bullying aspect, and work with legislation to try and educate the state and federal levels.
It’s an uphill battle, BUT, it needs to be done..
Will you join me in this journey in your area?
God Bless us all.
A wonderful Thank You to Diann Shaddox and her staff and all their hard work.. Proud to be part of a great Group and foundation..
Mary D. is a member of DSF Patient Council
Katherine Hepburn & ET
For many, the late actress Katherine Hepburn provided an indelible public image of essential tremor. Her quavering voice and trembling hands unmistakably betrayed the disorder.
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DARYL FRANK DRAGON (CAPTAIN & TENNILLE) ET STORY
Daryl Frank Dragon (August 27, 1942 – January 2, 2019) was an American musician, known as Captain from the pop musical duo Captain & Tennille with his then-wife, Toni Tennille.
Born into a musical family, Dragon was the son of Eloise (Rawitzer) and conductor, composer, and arranger Carmen Dragon, and the elder brother of Dennis Dragon, a member of the 1960s pop combo The Dragons and the 1980s surf band the Surf Punks. His godfather was actor and comedian Danny Thomas.
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Born into a musical family, Dragon was the son of Eloise (Rawitzer) and conductor, composer, and arranger Carmen Dragon, and the elder brother of Dennis Dragon, a member of the 1960s pop combo The Dragons and the 1980s surf band the Surf Punks. His godfather was actor and comedian Danny Thomas.
In late 2009, Toni Tennille announced her husband had developed familial tremor. According to Tennille, his condition was neither debilitating nor terminal. Rather, his noticeable tremor was exacerbated by stress and anxiety. Subsequently, the tremor condition limited most of Dragon's public appearances. In November 2009, Toni Tennille announced that Dragon was under a physician's care to determine the best method of his treatment.
In September 2010, Tennille publicly clarified her husband's condition as "a neurological condition (later confirmed to be essential tremor), which causes him to have tremors". Tennille indicated the condition was debilitating to Dragon's abilities as a musician.
In late 2009, Toni Tennille announced her husband had developed familial tremor. According to Tennille, his condition was neither debilitating nor terminal. Rather, his noticeable tremor was exacerbated by stress and anxiety. Subsequently, the tremor condition limited most of Dragon's public appearances. In November 2009, Toni Tennille announced that Dragon was under a physician's care to determine the best method of his treatment.
In September 2010, Tennille publicly clarified her husband's condition as "a neurological condition (later confirmed to be essential tremor), which causes him to have tremors". Tennille indicated the condition was debilitating to Dragon's abilities as a musician.
CHARLES SCHULZ WAS THE CREATOR OF THE "PEANUTS" CARTOONS AND HAD ESSENTIAL TREMOR.
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.
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.
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.
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.
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.
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To learn more about Charles Schulz and “Peanuts” go to http://schulzmuseum.org/