My Shaky Quaky Gramma

By Kelly Roberts
   I love my shaky quaky Gramma. I give her lots of hugs. My shaky quaky Gramma loves me. 
   We play basketball. But sometimes her legs get wobbly. So, she sits in a chair and yells, “Great shot!” when I make a basket.
   I love to play with my shaky quaky Gramma. But sometimes she is pretty shaky. One day we were building with blocks and she accidentally knocked down my building. I cried even though I know she didn’t do it on purpose. I think sometimes it makes her cry too.
  We read lots of books together. But sometimes I have to hold the book because she is too shaky. I turn the pages and she reads to me in funny voices.
   We play board games. But sometimes she accidentally hits the board and knocks all the pieces off onto the floor. We laugh as we put it back together.
   Sometimes she gets embarrassed when my friends are around. But I tell them not to be afraid of my shaky quaky Gramma and they understand.
   We play video car racing and she tries not to shake too much. But she usually comes in last. I love my shaky quaky Gramma when she doesn’t mind if I win.
   We take short walks by the river and throw rocks. She has to use her cane so I don’t run way ahead but stay close in case she falls.
   We like to paint pictures. But sometimes she makes blops on the page and makes them into dinosaurs. Some blops make good butterflies so we paint them together. I love my shaky quaky Gramma! 
   My Gramma told me she has essential tremor (ET). A tremor means something that shakes. She said something works different in her brain and she makes shaking movements she can’t control. My Gramma can’t help it when she shakes and quakes. It will never go away and she can’t give it to anyone like a cold.
   My mom and I make cookies. My shaky quaky Gramma used to make cookies too. But sometimes she would spill the flour or burn herself on the cookie pan. So now we play silly music and she sings along and dances with us in the kitchen. My shaky quaky Gramma is a good dancer. You should see us shake and quake while we bake!
   But sometimes it makes me extra sad she shakes and quakes. I just give her a bigger hug and tell her I love her. She hugs me back extra tight with her shaky quaky arms and tells me she loves me.
   Let’s go shake and quake Gramma!

Kelly is a student at the Institute for Children’s Literature. She wrote this because she thinks it’s important to teach children empathy and to help them learn to not be afraid of people who shake or are different. She said, “Stigma falls way the more we talk about this things.”

 

ET, Exercise and Longevity

The question about whether or not to exercise if you have essential tremor comes up often. This article was written several years ago by Dr. Jankovic, who serves on our medical advisory board. But the information is worth reprinting.

By Joseph Jankovic, M.D.
Director, Parkinson’s Disease Center and Movement Disorders Clinic, Department of Neurology, Baylor College of Medicine, Houston, Texas

Any discussion of the management of a chronic disease would not be complete without emphasizing the importance of physical activity. Exercise has been shown to lower blood pressure, reduce obesity and prevent cardiovascular disease, but there is little data on the role of exercise and essential tremor (ET).

In fact, many patients with ET observe that their tremor is markedly exacerbated after strenuous physical activity or exercise and understandably wonder if they should avoid such activity.

As long as there is no cardiac, orthopedic or other contraindication, patients with ET should remain physically active. Be reassured that worsening of tremor after exercise is expected due to the outpouring of adrenaline (or epinephrine and norepinephrine) during exercise. Adrenaline, released during any physical or psychological stress, stimulates beta adrenergic receptors in muscle spindles, leading to increased muscle activity, manifested as worsening of tremor. This effect, however, is temporary and the tremor usually returns to its previous state after a few minutes of rest.

Alcohol and propranolol, a beta adrenergic blocker, can reduce stress-induced exacerbation of ET, hence the two drugs are often used to “calm” the nervous system.  Even professional actors often use propranolol to minimize the tremor effects of anxiety associated with stage fright.

Many studies have shown that exercise benefits not only the body but also the brain. It has been shown to improve learning, memory, and depression; it also appears to protect the brain from neurodegeneration. [Cotman et al, 2007].

Although Parkinson’s disease is different from ET (despite the occasional overlap of the two disorders), studies on exercise in Parkinson’s disease may be relevant to patients with ET.

In a prospective study of 48,574 of men and 77,254 women, higher levels of physical activity was associated with lower risk of Parkinson disease [Chen et al, 2005].  Based on systematic literature review, the Practice Recommendations Development Group from The Netherlands concluded that there is sufficient evidence to recommend physical therapy and exercise to improve balance, and training of joint mobility and muscle power and to improve physical capacity of patients with Parkinson disease [Keus et al, 2007].

There are many other studies that provide evidence exercise may be helpful in improving motor function [Kwakkel et al, 2007], although firm evidence that exercise lowers the risk of Parkinson disease is still lacking [Logroscino et al, 2006].

Exercise may prolong life not only by preventing or reducing the risk of life-threatening disorders, but also by slowing the aging process. One of the most compelling arguments in favor of exercise as an important anti-aging factor is the recent finding that leukocyte telomere length, a biological indicator of human aging, correlates with exercise.

In a study of 2,401 twin volunteers, comprising 2152 women and 249 men, who were asked to complete detailed questionnaires about their level of physical activity, smoking status, and socioeconomic status, the leukocyte telomere length was 200 nucleotides longer in the most active subjects as compared to the least active subjects during their leisure time (P<.001), even when adjusted for age, sex, body mass index, smoking, socioeconomic status, and physical activity at work.

It has been postulated for a long time that patients with ET live longer than those without it. The Russian neurologist, Minor, suggested in 1935 “that a factor for longevity was also contained in the tremor gamete.”

In a study published in 1995 it was found that parents of ET patients who experienced tremor lived on the average 9.2 years longer than those parents who did not have tremor. Since the parents with tremor who lived longer probably had ET, we concluded that ET confers some anti-aging influence and significantly increases longevity.

  • While there is no obvious explanation for this striking observation, it is possible that: patients with ET have an underlying personality trait that encourages dietary, occupational, and physical habits that promote longevity.
  • Perhaps, the small amounts of alcohol to calm the tremor might prolong life.
  • Finally, the tremor itself might be viewed as a form of exercise that would have beneficial effects on general health and on longevity.

Further studies are needed on the potential anti-aging effects of ET, and whether exercise confers additional benefits by favorably modifying the course of the disease.

References

Cherkas LF, Hunkin JL, Kato BS, Richards JB, Gardner JP, Surdulescu GL, Kimura M, Lu X, Spector TD, Aviv A. The association between physical activity in leisure time and leukocyte telomere length. Arch Intern Med 2008;168:154-8.

Cotman CW, Berchtold NC, Christie LA. Exercise builds brain health: key roles of growth factor cascades and inflammation. Trends Neurosci 2007;30:464-72. Trends Neurosci 2007;30:489.

Chen H, Zhang SM, Schwarzschild MA, Hernan MA, Ascherio A. Physical activity and the risk of Parkinson disease. Neurology 2005;64:664-9.

Jankovic J, Beach J, Schwartz K, Contant C. Tremor and longevity in relatives of patients with Parkinson’s disease, essential tremor, and control subjects. Neurology 1995;45:645-8.

Keus SH, Bloem BR, Hendriks EJ, Bredero-Cohen AB, Munneke M; Practice Recommendations Development Group. Evidence-based analysis of physical therapy in Parkinson’s disease with recommendations for practice and research. Mov Disord 2007;22:451-60.

Kwakkel G, de Goede CJT, van Wegen EEH. Impact of physical therapy for Parkinson’s disease: A critical review of the literature.  Parkinsonism and Related Disorders 2007;13:S478-S487.

Logroscino G. The role of early life environmental risk factors in Parkinson disease: what is the evidence? Environ Health Perspect. 2005;113:1234-1238.

My Desire to Become a Clinical Psychologist Was a ‘Worthy Expedition’

Each semester, the International Essential Tremor Foundation (IETF) awards four $1,000 college scholarships to students who have essential tremor through its Catherine S. Rice Scholarship Fund. As part of the application process, students are asked to write an essay on the topic, “how essential tremor has affected my life.” The following essay is from one of our spring 2019 scholarship recipients.

By Casey Becker,
Swinburne University

During my first year in a psychology degree, I began to shake and was diagnosed with severe essential tremor. This, understandably, made me depressed, confused and distraught. I immediately sought help from a clinical psychologist, and her contribution to my well-being has confirmed that my desire to become one myself was a worthy expedition. During my second year of college I would find myself zoning out a lot. My memory didn’t seem to be what it once was. Then I started having strange head spins with dreams in them. That’s the only way I know how to describe a temporal lobe epileptic seizure (TLE).

photo of Casey Becker, IETF scholarship recipient 2019

Understanding and accepting that both of these conditions may gradually get worse is a difficult feat and becomes more complex every time I have to let another hobby go or fundamentally change the way I do something in order to account for my tremor or epilepsy. I am a curious and passionate academic, but I also have a creative side. My love for drawing, painting, sewing and playing music have often turned from being a source of comfort to a source of stress. However, I did not give them up. I changed musical instruments. I switched from drawing the painting. I found a keyboard that allowed me to write. And I found new ways to remember things even during seizure clusters. Somehow, I managed to complete my degrees full-time, with a HD average (high distinction).  

By studying the brain, my disorders have turned from a psychological burden into a fascinating first-hand experience of atypical neural function. I picked up every bio-psychology and medicine elective I could, then enrolled in an applied science honours degree. I hope to use my experience as a clinical psychologist and a researcher to help individuals, while contributing to the knowledge that can improve our understanding of psychology.

I am undergoing a Ph.D. in psychology at Swinburne University. I come from a low SES single-parent family. I am a first-generation high school graduate, and the only person in my immediate family to attend college.

Essential Tremor Has Made Me Adaptable and Determined

Each semester, the International Essential Tremor Foundation (IETF) awards four $1,000 college scholarships to students who have essential tremor through its Catherine S. Rice Scholarship Fund. As part of the application process, students are asked to write an essay on the topic, “how essential tremor has affected my life.” The following essay is from one of our spring 2019 scholarship recipients.

By Brogan Speraw,
Ohio University

Essential tremor has affected me in multiple ways. The first and most significant of these is that it provided me with the determination I have today. My tremors have been a constant struggle in my life. The simple tasks of filling in the bubbles of a test, feeding myself a bowl of soup, and tying my shoes were always a challenge. When I was younger, I was persistently frustrated by my condition until one day my brother told me to approach it like a game. Being the child I was, I refused to lose any game and aspired to find a solution to every conflict thrown in my path. It gave me a new outlook and an inner need to beat my tremor any way I could. Eventually, this “game” became routine, and I began applying it to other facets of my life such as academics, sports and my other extracurricular activities. This strategy evolved into a way of life, fueling me with the motivation to accomplish everything I did, or at the very least, put my best efforts into it.

spring 2019 scholarship winner brogan speraw

Furthermore, my tremors have also given me the skills of adaptability, a strength that has impressed my professors and colleagues alike. When hit with adversity, I find a way to succeed. I attribute that entirely to my tremors and the support of my family. For example, in 2017, my group in the introduction to engineering class was confronted by a sudden problem. Our assignment: an elevator of our own design, built by myself and my team. This was not only our final, but also a competition among teams to see who could lift the most weight up one meter in the shortest amount of time. On the final test day, our elevator was doing wonderfully until the time came for the judging. Our elevator failed twice and we were allotted two additional attempts to both fix our elevator and pass the assignment. On our third attempt, it almost failed again due to a soldering malfunction. To resolve the issue, I simply forced the wires into their proper position. The payload fell for an instant before quickly rising again, resulting in finishing third place for my team and I. This was a prime situation to present my adaptability.

Finally, my tremors have given me an invaluable asset in life: thick skin. This is an important skill for anyone to have, but for someone with any sort of disability in public school systems, this is necessary. The ability to take comments about you and just let them go is vital in my experience. Honestly, it was difficult at times, but I learned that it was easier than attempting to pursue any aggressive retaliation. This skill was mastered through trial and error. By learning to let hurtful people and situations go, I’m glad to state that it has aided me immensely with making and maintaining valuable, honest friendships and relationships.

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Applications are being accepted for fall 2019 scholarships from the IETF.  If you are a current or incoming college student with essential tremor, complete the application on the IETF website. The application deadline is May 1, 2019.

I Can’t Be Rehabilitated from Having ET; But It Gives Me an Advantage to Helping Others

Each semester, the IETF awards four $1,000 college scholarships to students who have essential tremor through its Catherine S. Rice Scholarship Fund. As part of the application process, students are asked to write an essay on the topic, “how essential tremor has affected my life.” The following essay is from one of our spring 2019 scholarship recipients.

By Madison Young,
Arkansas Tech University

I turned 20 last month and read a list of 20 things every 20-year-old should know. Number 17 was “There Is No Roadmap.” That is very true. I can look back now and remember standing at certain crossroads and wondering which way to turn. Different paths have different benefits and obstacles. You can hardly see 20 yards down the path sometimes. As I look back on just a few of my turns, I realize that having essential tremor (ET) has had an impact on the choices I have made in direction, not in a negative way but an impact all the same.

Madison Young, IETF scholarship recipient

Having ET does affect my life in a variety of ways. Some tasks are simply harder than they would be if my hands and arms would just be still. Plus, when the tremors take over my body, I get a little embarrassed because everyone notices, then they try to act as if they didn’t. It seems like there is a polite protocol for noticing something different about other people.

One of the turns ET has led me to make is my field of study in college. I am a rehabilitation science major planning on moving into physical therapy. Unlike people I will eventually treat/help, I can’t be rehabilitated from having ET. But it certainly causes me to relate. It gives me an advantage to helping others over someone who has never had an obstacle to overcome. I understand to some extent what it is like to be viewed as different.

In all of my classes we talk about people with disabilities, and the main point always made is most people have disabilities, but not always visible disabilities. We are all “disabled” in our own way. Some disabilities you notice right away and some you don’t. Being diagnosed with ET at such an early age has helped me learn a lot about human nature. I just want to be able to help people live the most normal lives possible.

Currently there is no cure for ET. I am ok with that. I am at peace with who I am and ET doesn’t define me or what I can accomplish. In my classes, I am learning how to help others reach that point and just deal with the situation in a positive manner. It is an empowering feeling to be able to help someone. And when you are helping someone, and they connect with you because you aren’t perfect either, it makes it all worth it. Yes, having ET has changed my life and my path, but I believe it is for the better.

It has been almost six years since my diagnosis and I can’t help but wonder where I will be at age 26. What will I be doing and how will my tremors have progressed? While there is no roadmap, there is a road seen clearly in hindsight. I hope I always remember to look back at my turns in life that have made the difference.

* * * * * * * *

Applications are being taken for fall 2019 scholarships from the IETF.  If you are a current or incoming college student with essential tremor, complete the application on the IETF website. The application deadline is May 1, 2019.

I Do Everything I Can and Try Not to Let My ET Get Me Down

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others.

By Elissa,

I was diagnosed with essential tremor about 12 years ago, but I probably had signs of it earlier than that. I have head, vocal, hand, body and foot tremor.

My ET is familial. My paternal grandmother’s head shook but I thought it was old age. My father’s hand and head shook but I thought he was a messy eater. Also, when his head shook I thought he was just in deep thought. When I was very young I recall my paternal grandmother’s head shaking and it scared me . . . I didn’t know why her head shook.

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In my late 50s, I was president of my temple’s sisterhood. I remember shaking a lot when I had to speak in front of people. But I think the stress of the presidency brought out my tremors. 

For years I have attended the Essential Tremor Support Group in Pontiac, MI. The support group leader, Tom Pilarski and his wife Sabrina, are WONDERFUL people! My husband, Danny, is a huge support to me as well. He joined me at my first ET Support Group meeting and I met so many great people who had tremor like me. I was given materials to read from the International Essential Tremor Foundation (IETF) so I could find out as much as possible about essential tremor.

At one meeting, Dr. Peter LeWitt spoke. He is in charge of the movement disorder department at Henry Ford Hospital in West Bloomfield (not far from my home). I made an appointment with Dr. LeWitt and he told me about five different medications for essential tremor and explained their side effects. I picked Topamax because one of the side effects was weight loss. BIG MISTAKE! I slept all day! I have also taken Klonopin and primidone. Now I am on propranolol. This medication is the first medication that I feel has actually worked on me. I feel less “shaky” if that’s possible. I’ve been taking the medication for about a year now. I know the tremor has not disappeared but I FEEL a difference.

Three words I would use to describe ET as it relates to my life are: shakiness, debilitating and annoying.

Once when I had a pedicure, my left foot tremored so badly that the whole salon was in shock. You could see the looks on their faces. I was shocked as well. I had no control over my left foot. It was jumping all over the place! No one said a word but the looks on their faces said it all.

One of my side effects of ET is typing the wrong letters on the keyboard. I’m so happy that there is a red underline when I make a mistake so I can correct it. My handwriting is also illegible.

My vocal tremor bothers me more than any of my other tremors. I have Botox injections to help remedy the vocal tremor. Right now it’s fine but it has to be administered three to four times a year. After the infection, my voice is very weak for about three weeks before my “normal” voice kicks in.

My head tremor is something I just have to live with. I don’t see it, so it doesn’t bother me as much.

ET is my life. I live my life the best I can. I try to do everything I can and try not to let ET get me down. I try to support those who I know can use the support. I have connected many people with the IETF and my support group as well. I try to educate people about what ET is and how it is different from Parkinson’s disease.

I’m living with ET and I’m not going to let it get me down.

All of My Life I’ve Had People Ask Me Why I Shake

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others.

By Rhonda,

I guess I’ve had essential tremor all my life. I remember as a child, my mom took me to the doctor and he would have me hold my arms straight out in front of me with my fingers spread apart. Then he would give me some type of injection. I never knew what it was and my mom never told me.

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I never knew I had essential tremor until I was in my late 50s. I went to a neurologist for something else and that’s what he told me. The minute he walked into the room and took a look at me shaking, he knew.

As I’ve gotten older it has worsened. I’ve tried to work at a coffee shop and couldn’t carry a cup of coffee to a customer. All of my life I’ve had people ask me why I shake. Am I scared? I’ve even had people  laugh at me because I was shaking. Some people have said I’m on drugs because I shake, or am an alcoholic. I’m so tired of the embarrassment. I just want this nightmare to end.

I tried a medication called propranolol. But I was on blood pressure medication and other medication at the time and went into the hospital because I was sleepy and tired. That told me I was being over medicated. So I got off everything but the blood pressure medicine.

If I’m ever blessed with something that helps me with my tremors, I will be sure to share it.

Oh Lord, Please Take This Tremor from Me!

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others and share your comments and words of encouragement.

By Anna,

I first noticed I had a head tremor when I was approximately 10 years old. I remember people would ask me why I was shaking and I really didn’t know. And at that age, I didn’t seem to care that much as it didn’t happen that often. I actually blamed it on a neighbor pushing me out of a tree when I was around that age. I thought I had jolted something out of position. My dad didn’t have his tremor yet as it only came on for him when he was well into his 60s.

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As I got older and into high school, the tremors seemed much more frequent. But as long as I kept moving (didn’t stay still) they weren’t noticeable. So I began vigorously shaking my leg when I sat still, especially in school. I remember my teacher asking my mom if I did drugs. My mom just said “she’s a bit anxious” which also was true. The hardest part was feeling out of control and not really knowing why.

After I graduated and found out I actually had essential tremor I decided to try some different medications to see if I could calm it a bit. I tried gabapentin, topiramate, propranolol and primidone but none of them were worth the side effects they brought on. I even tried Botox injections in my neck but after all the pain and the money, I felt no relief. I started taking antidepressants in my early 30s which helped me deal with the tremors a bit better than without them.

Into my 40s, I found out about Deep Brain Stimulation (DBS) surgery and from then on I was on a mission. You see, I was starting to become an introvert. I hated going anywhere where I had to sit still. I had three beautiful children and worked full time at a bank and as long as I could move a bit I could camouflage the shaking. Honestly, I think it was way more pronounced in my own thoughts than it actually was outwardly. But that didn’t matter. To me, I was a freak and I couldn’t stand the thought of people looking at me and either wondering what was wrong or feeling sorry for me. It was really hard to concentrate or focus.

“I can’t count the number of times people asked me if I was cold and I would say yes just because I didn’t want to attempt the ET story and have them feel bad for asking.”

Whenever my bank manager called a meeting, which was almost daily, I literally felt sick to my stomach because I WAS IN THE DREADFUL SITUATION OF TRYING TO SIT STILL AGAIN. And it was actually physically painful because the more I tried to sit still, the harder it was. It was like an internal/external battlefield and all I wanted to do was fall asleep and be still.

The dentist was just as bad or worse. And the time I had a small precancerous spot removed from my forehead was absolutely horrifying because the nurse could not hold me still while the doctor cut me. I even stopped going to church, which I only started in my 30s, but was enjoying. I do remember praying, “Oh Lord, please take this tremor from me!”

Well, in 2006 my prayers were answered! I got my double Deep Brain Stimulation (DBS) surgery. It worked! I was over the moon. I had to get my chest opened again in 2011 and 2016 to get new batteries, which as fine. In 2018, I needed new batteries again and I noticed my tremor coming back quite a bit. From 2006 until 2016 whenever I noticed my tremor creeping back, I would just turn up my stimulators and I was pretty much still again. But the downfall in turning them up was that the wires implanted in my brain were so close to my speech center that every time I turned them up it would be a little harder to talk. Unfortunately now, 13 years later, I sound like I have a speech impediment and it is a chore to talk. But don’t get me wrong, I will NEVER regret the surgery and I will take the speech issue over the tremors any day.

Now I’m hoping and praying to get the new focused ultrasound surgery. I am always positively searching for a better quality of life. So my advice to anyone else suffering with ET is: do what feels best for you. The DBS was an absolute godsend for me and gave me 12-13 years and it’s still not bad, but if the new surgery can help my speech and I am eligible, that will be my next quest. I want to live my best life.

ADA Accommodation and DBS Therapy Provide Support for Fred

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others.

Fred’s Story

Fred was diagnosed with essential tremor (ET) at the age of 62. That was just two years ago, and yet he has had tremors since he was a teenager. His grandfather had ET it and his sister has it. He said they all have always just adapted the best they could.

Unlike many people afflicted with ET, Fred didn’t let it stop him from going out to dinner, even though he couldn’t get a spoon of corn or peas to his mouth without spilling them. He remembers going through the buffet line at his nephew’s wedding and struggling to serve himself because of his trembling hands. Though he admits that his handwriting has never been good, it finally became so illegible that even HE couldn’t read it.

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“Taking communion at church got harder and harder,” he recalled. “And fine detail work, such as holding very small screws, became impossible.”

Fred applied for “reasonable accommodation” at work, where he is a water treatment operator. Under the Americans with Disabilities Act (ADA), employers are required to provide “reasonable accommodations” to qualified employees with disabilities. It gave him a sense of relief to know others were aware of his condition and that they would provide accommodations to support him in his work.

Through the years, Fred said what helped him cope the most with his ET was his faith and becoming comfortable enough to accept his tremor. He also sought support through the IETF’s Essential Tremor Awareness Group on Facebook.

“When you hear what other people with ET are going through, it kind of relieves the frustration you are going through,” he said.

Medication has never provided him much relief, and like many others, Fred saw his ET worsen with age. He got to the point where he knew he had to do something to get relief. So he went online and did some research on surgical options, then visited with his neurologist about Deep Brain Stimulation (DBS) therapy. After learning he was a good candidate, he underwent surgery a year ago. Today he said he has his life back.

DBS therapy involves electrical stimulation to the brain through an electrode planted deep in the VIM (ventralis intermedius) nucleus of the brain called the thalamus. The implanted electrode is connected to a neurostimulator (battery) which provides the appropriate amount of electrical stimulation to control the tremor.

Today there are still times when Fred shakes a little, but not to the degree he did in the past. A small, but important thing he can do now, is serve his wife a cup of coffee.

“I’m excited to tell people about my ability to manage my tremor through DBS. There is hope out there,” he said.

Her Acceptance of ET Built Her Confidence and Brought Empowerment

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others.

Rachel’s Story.

Essential tremor (ET) is not just a condition of the elderly. Rachel is proof of that. She is only 28 years old and she has had ET since she was five.

Young but wise beyond her years, Rachel has come to terms with her ET and that acceptance has helped her.

“If you don’t accept yourself as a person with a disability and you just are negative about it and say, ‘this is it. I can’t do anything,’ then you are letting life and time pass you by,” she said. “But if you actually accept it and have that confidence and use it to your ability as a way of empowerment, then it’s something that makes life and time a lot easier.”

Rachel has made it a priority to raise awareness about ET. As a communication major in college, she used ET as her platform when she gave speeches and produced videos. She captured ET through photography and worked on individual and group projects. She saw it as an opportunity to let people know that ET exists and explained the impact it has on people of all ages. She even agreed to be the subject of a documentary film her friend Debra produced. Titled, ShakeItUp! it can still be viewed online today through YouTube.

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But, Rachel didn’t stop there. She went on to reach out to people all over the world through Facebook support groups, and maintains a presence in more than 30 groups today. She started a blog where she wrote about ET, and her social media posts on Facebook, Instagram and Twitter frequently mentioned her challenges and struggles. More than anything, she focused on helping people understand what ET is.

“People know what Parkinson’s disease is so I use that as a point of reference to say, if you know what a resting tremor is with Parkinson’s, then think about the reverse of that. ET is the action tremor,” she explained.

Rachel became co-leader of an essential tremor support group in her community and then took the reins as leader when her co-leader moved.

She estimates she has reached over a thousand people through her awareness efforts.

“I try to take any opportunity I can to be able to share my story,” Rachel said. “It also helps me. It’s a form of talk therapy and you never know who you are reaching.”