More stories about living with Essential Tremor, things in our life that we all take for granted become huge monumental task for anyone living with a movement disorder.
I'm assuming shaving is as crappy for guys as it is for us ladies. I call it my bi-weekly blood-letting in the summer and in the winter, it's called "shaving? what's shaving?" lol I also develop wild tremors/spasms in my feet while standing on a ladder and them I drop the screw or nail I'm trying to fix, so I have try to climb down and pick up everything I dropped, go back up again, and proceed to drop more stuff and do it all over again. Also I never do anything like this alone anymore so I feel like a wussy cuz I have to be watched like a kid even though it's for my own safety.
That lack of control and feeling like a "normal" person is hard for me. A normal person can hop up on a step-stool and put up a curtain rod without it becoming a epic episode, needing spotters and 10 screws in your mouth instead of the 4 you really need. Lack of control=frustration for me and I know it is a huge issue for men as well.
Personal Stories – Doris, age 77
Posted on April 14, 2014 by HopeNETAdmin
Her age of onset was in her early 40’s. She tremored in both hands and after some time it seemed to go away but then came back in her head and then in her hands again. She was diagnosed in her late 40’s by a neurologist and sought a second opinion from a doctor at Johns Hopkins. She remembers the neurologist noting she complained of migraines, he asked if she drank coffee and was told she needed to wean herself off caffeine to see some improvement.
Doris’ son has ET and he had the exact same experience of it going away and coming back that his mom did. He is a welder by profession and feels the tremors when he puts his heavy helmet on. When Doris was in her mid-50’s she went to Hopkins because the ET started to worsen. It took her 6 months to get an appointment with a particular doctor. She started Propranolol at a low dose which worked but was depressed as a side effect, so she stopped. She tried Topamax and Mysoline, but both were not a good fit for her. Mysoline made her “out of it” and confused so she stopped. Doris is not taking anything now for her ET but does have Propranolol to take if she anticipates a stressful situation … such as an experience where her head shook badly when she went to make a presentation to the county about a building being constructed.
She has some Dystonia in her neck as was diagnosed with this movement disorder a few years ago. Because of the way her muscles contract she always sits on the right side near the back when people are assembled so she can look left and won’t distract people. It does not bother her that people look at her and her shaking, she’s gotten used to it. There have been occasions however when she has been asked something and she said ‘yes’ but her head was shaking ‘no’.
No one in her mother’s or father’s family that she knows of has ET. Her son however met his grandfather’s sister’s great granddaughter for lunch with Doris and they discovered this relative has it herself.
At an ET support group meeting she heard that if you have 4 kids (and Doris has 4 kids), 2 of them will probably have ET and as for the two that don’t have it, their kids will probably not have it either. Doris feels this supposition was dispelled when she met a couple in her support group who have one daughter with ET and one without it and the one without ET has kids who have ET.
Doris moved into her house 47 years ago and there was a problem with crickets in the basement, so she put down the pesticide Chlordane around the perimeter of the house. What she knew about Chlordane was that it stays .. you will probably never have termites [or in this case, crickets]. Chlordane has since lost approval for use in part because of its effects on the nervous system. She remembers the Chlordane splashing onto her Keds tennis shoes and that her kids slept in a bedroom in the basement; she wonders if it could have been a factor in the development of her ET and that of her children.
She has had balance issues in the last four years and goes to the pool for exercise. Her tremor occurs while she is carrying something, not afterwards, and also anytime there is an uncomfortable stress. Her tremor is constant whereas her daughter’s is more episodic and comes and goes away.
Tell Me I’m Normal By Elsie Doll
My family said not a word about it,
So I believed it was only I who shook
For no reason at all.
I was thirteen when tremor tentacles
Wrapped round my self-esteem.
I had no quarrel with life to deem
Me nervous as thought by my family.
Yet there it was consuming me,
A trembling like their’s denied.
In the privacy of my soul I cried,
Is there anyone to tell me I’m normal!
With trepidations, I left my family
In search of others not nervous, yet shaky,
And low and behold to my wondrous surprise,
I found scores of people supplied
With tremors and healthy esteem inside.
I stared and they said, “Hey, you shake too!
Do you not know that staring is rude?”
“Ironic,” I said. “As I hate stares at me.”
I became a member of their club ET,
And my self-esteem rose to where it should be.
Brad Carter was on CNN today, June 25, 2014 for a follow up about his DBS surgery a year later. Check it out
Brad Carter was born in Forth Worth, Texas and grew up on beautiful farmland outside of Macon, Georgia. He is an actor, VO artist, stand-up comedian, and accomplished musician. Brad has worked in film, television, voice over, PSAs, video games and has 28 national commercials under his belt. He is known for his ability to easily slip into roles, where he becomes the scum of society, makes you laugh with “dumb southern charm,” or breaks your heart with his sorrowful eyes and sincere acting style.
Brad has also studied Improv at the Groundlings and Improv Olympic. Brad also has a wide range of vocal characters for animation and the ability to speak with several different accents and dialects on command.
Brad has performed stand-up at popular LA comedy clubs such as The Improv and The Comedy Store. He has written comedy performed by Fred Willard, Edie Mclurg, and Alan Thicke. Brad also wrote comedy and collaborated with Anne Beatts, an Emmy award-winning writer from Saturday Night Live.
In May of 2014 Brad made history and world news when he allowed his brain surgery to be filmed, Twittered, and put on VINE live. The surgery called “Deep Brain Stimulation” implanted electrodes into his thalamus to get relief from a Tremor disease that had plagued him for years. During the 7 hour surgery Brad amazed the world when he played his unique guitar. The surgery has been viewed hundreds of millions of times and on most news stations around the globe.
In all, Brad had two brain surgeries and a 3rd surgery to implant the pacemaker in his chest.
Given this second chance to play music, Brad wasted no time in funding a kickstarter campaign to record a full length solo album of his original music Due out Early Summer of 2014. If you would like to be notified when the album is complete, please sign up at the
Brad graduated with a BFA in Fine Art from Valdosta State University in 1997, with a focus on bronze sculpture and oil painting. He still uses his artistic talents to help other actors get the kind of headshots that will help get them to the next level. Check out his work at:www.bradcarterphoto.com
DBS Stands for “Deep Brain Stimulation”. Deep brain stimulation (DBS) delivers a constant low electrical stimulation to a small region of the brain, through implanted electrodes connected to an implanted battery. It is used to partially restore normal movements in Parkinson's disease, essential tremor, and dystona.
I made history when I was in the news recently playing guitar during my brain surgery, and was seen all over the world by hundreds of millions of people. Many of you have questions so here is the answer; I had my surgery on May 23rd 2013 and another on September 24th, 2013. I am doing well and happy to report that I am getting great results. I am so grateful to UCLA and to my Doctors.
I have a condition called “essential tremor” which is dominant in my right hand. Make no mistake, this is not a cure. This can however give me back some of the control I have steadily been losing in my hands over the past 8 years. I have since been invited to speak at “ET” and Parkinson’s Disease events and am very honored to do so.
I am in the process of recording an album of my original music that I funded on kickstarter. I am very excited about it. If you would like to check it out go towww.bradcarterkickstarter.com
I am also featured in an upcoming documentary called KICKSTARTED.
If you would like to still donate you can do so on my front page. I am still collecting donations to make a video.
Thank you for your concern and well wishes.
My story by Brittany Adler
Being told at fifteen, “you are going to change the world”, made me realize I am meant to be a physical therapist. At a young age, I began my journey to help and inspire people to always be their best. I was born with a neurological movement disorder called Dystonia, causing my muscles to contract and affecting my speech. I do not consider this a handicap. I do not use my handicap as an excuse to hold me back from achieving my goals. I want to use my experiences to help others as a competent and compassionate physical therapist.
My Dystonia challenged the normal progression and successes of every childhood developmental milestone. When I was eight months old, I started physical, occupational and speech therapy. I not only had to be taught to walk, but also had to learn to transition from sit to stand, to steady my balance and to hold and grip with my hands. I received therapy to learn how to form sounds and words so I could speak. I had to make a conscious effort to learn things that most people do automatically. Finally, at three and a half years of age, I took my first steps. Once I started walking, there was no stopping me. Those steps were my first steps toward my goal of making a difference in people’s lives.
While achieving milestones later and challenged more than most, I was committed to achieving my goals while continuing physical, occupational and speech therapy and coping in an otherwise “normal” social environment. Despite my handicap, persistence was iconic with all activities throughout my childhood. I participated in difficult academic programs and “sports” like others my age.
Community volunteering has always been very important to me. I was active in the Girl Scouts for eleven years. I understood the meaning of community and had a keen desire to help others. I focused my passion for young children as a counselor and teacher assistant. I discussed my disability with age appropriate conversations to discuss the vast differences that all the children might be confronted with. Respect and tolerance became apparent.
I graduated high school cum laude. I attended Florida Atlantic University, studying Exercise Science and Health Promotions. The school had no prior experience with my kind of physical condition. The department was uncertain about the workload of classes and physical aspects of this major for me. I knew my potential. I even started volunteering at a ranch for children with disabilities with the use of the horses’ movement (hippotherapy). I am so inspired and proud to be a part of this program. This has reinforced my interest, passion and commitment inhelping children with disabilities. I had no doubts about what I could accomplish. I never looked back.
I want to make a difference in children’s lives as a pediatric physical therapist. I want to show and teach children with disabilities that being different does not mean they cannot pursue their goals and aspirations. They can achieve and accomplish the things that are important to them if they put their minds to it. Many may underestimate the potential of children with disabilities to learn and grow mentally and physically. I want to motivate and challenge children with disabilities to do things and to try to be the best they can be.
I am never shy and always seeking to find the answers to any question. I am determined to be understood, to speak my mind and to be an integral,contributing part of a group. Acceptance is difficult even without a physical handicap. I have proven to others and, more importantly, to myself that I belong and will succeed in whatever I put my mind to.
In spite of my physical, verbal, and fine motor challenges, I have decided to face life head on. I want to educate others to consider everyone’s special strengths and weaknesses. Everyone has a handicap of some kind whether it’s physical or nonphysical. I am fortunate in so many ways. I want to help others, especially children, create opportunities. I hope to inspire everyone, adults and children, with and without disabilities to be the best they can be.
Personal Stories – Deb, age 73
Deb’s ET began about 5 years ago. Before retiring from the Navy she had an encounter where the updraft from a landing helicopter picked her up, flipped her over and dropped her on the ground, 3 times. The ET started about a year after this as a slight tremor in her left hand, her writing hand. It spread more recently to the other hand, and the left hand has gotten worse to where people notice it now. The more she concentrates on not spilling, she spills, ie, when eating a bowl of soup. The soup does not make it to her mouth unless she uses two hands. Deb sings and also notices the tremor impedes her holding sheet music in her hands.
She has hit her head about 5 times in life and has had 3 concussions. Long before the helicopter accident she was in a terrible car accident, in a stopped car that was hit by a car moving at 85mph and threw her vehicle 50 feet. Deb had two compressed discs in her spine, the cranial and lumbar. However, she definitely attributes the helicopter accident to the onset of her tremor. She went to her neurologist for the tremor about a year ago when it became more noticeable and went on Primidone. She continues to take it but finds it doesn’t seem to work.
She doesn’t recall anyone in her family having had a tremor. She has had her frustrations from ET, such as her writing became so bad that when her bank once asked her to write to get money out, the amount she wrote out was not even legible. Also she tires more easily because of trying to hard to control the tremor.
Before Deb retired she worked in a laboratory and did precise work that required her to be steady. She was thinking of going back to work in the medical field she was trained in to make some money but says it wouldn’t be possible now with her tremor because it makes her too unsteady.
In term of coping, she finds wine calms her tremor down so she will have some at dinner, 3 champagne glasses full. But while wine works, whiskey does not. She has started to do stretching exercises and wants to try Tai Chi. The idea is to stabilize the impulses from the thalamus. She hopes NIH will have their octanoic acid study resume again so that medicine will be made available that mimics the effects of alcohol on tremor without the drunken aspect.
Interviewed by Lisa Gannon
Silver Spring, MD Support Group Member
Well my ET is a little different because I shake at rest and while in motion and it effects both arms/hands and my right foot. My kids won't let me help with any boo-boos they get because they say the shaking makes it worse. I am not allowed to use scissors or use sharp knives without being very aware of what I am doing. My oldest who is almost 13 gets a concerned look on her face when she sees the tremors act up. I struggle everyday to work on a computer for work but the scroll mouse helps and I struggle everyday with home life. I am not able to take any of the meds so I learn to deal.
With all that downer stuff I have also met and made some wonderful friends. I have a ton of people who love and support me and a safe place to vent or ask questions. I have learned patience and that it's ok to ask for help, or go slow or even say no if it's too much. I have shook my whole life but finally at the age of 33 it doesn't scare me because I understand what it is. I don't mind people knowing my name because ET is my new friend who isn't going anywhere. I still try to hide it or control it but I am not as afraid to be around others.
My ET story! My name is Lily C Haryett.
I have had ET for the majority of my life. The first knowledge that I had ET was in grad school and I was to practice printing my letters and do math. I was shaking and to control it I would tense right up
and the first time my arm started to hurt. (I might add that I am all so a transgendered woman and did not start my transition till a year and a half ago and I am 42 now!) I often as a little boy when I was frustrated with my tremors I would act up. I all so had trouble learning how to do my laces up or do up my buttons.
In my teen years, I took note that in shop class I had trouble with using saws and equipment and stuff inside the shop and drawing out things and doing a lot of fine motor skills I still have a very big problem dealing with change and coins. I might add that my spelling and grammar problems are a direct result of my tremors in school! I knew I had a ton of problems with doing most things in shop class and auto shop and most things I even had and still do have a problem typing and I even tried to do home ec and sewing and stuff like that and that was not a help. School was my biggest problem and disappointment.
In my adult life, I have had a lot of jobs and lost jobs because of my tremors. Now I will explain one part of this out. It was early 2000,s. I was working at this small assembly company and there was this one little job making store display shelves that were spring loaded to keep product at the front and part of the job was putting in gears and washers in the two holes and a rivet to hold the shelf together to its steel base. Now I learned how to do this really fast sitting down on an adjustable chair but one day they took the chairs away and I could not do the job without shaking and I was no longer as fast or could keep up with the work. I at this point knew there was something up but no one told me about ET. So I was told I was slow and stupid and believed it. Then I
was lead in to the offices and told I was too slow and let go!
Now as I am transitioning in to a woman I am finding makeup application and some of the small buttons and clasps on tops and bottoms and some buckles on shoes as well as doing my hair very difficult. The worst is it’s getting worse and not going away! The big problem I am finding is all the drugs to control ET and my HRT interfere with the heart meds I am on and ether make my heart rate high and blood pressure is high! I believe that my ET is responsible for my right shoulder and arm pain in both arms. I am finding some times it’s within my
head and I have a leg shake as well. That’s my story in a nutshell! Lily Cole Haryett