Her ET Has Taught Her to Advocate for Herself

Each semester, the International Essential Tremor Foundation presents four scholarships to students with essential tremor. The scholarships represent hope for the future, and provide support to these students during a pivotal time in their lives. As part of the scholarship application process, each applicant is asked to write an essay that answers the question, “How has essential tremor affected my life?” The following essay is from one of our fall 2019 scholarship recipients.

By Elizabeth Carroll
2019 IETF Scholarship Recipient,
Student at University of Massachusetts Amherst

For the longest time, I didn’t notice my shaking hands. Classmates would point it out in the cafeteria and I’d respond quizzically. By eighth grade, however, my hands were nearly impossible to ignore. Writing became difficult; at times I would finish a sentence only to realize I couldn’t read my own handwriting because my hands had a mind of their own. Small tasks, like eating and buttoning my own shirt, brought frustrating challenges on my worst days and minor irritations on my better days. Eventually, a neurologist diagnosed me with essential tremor (ET). While the condition runs in my family, I found myself caught off guard. My diagnosis labeled me with a disability, the same disability that I witnessed rob the independence from my elderly aunt.

Afraid, frustrated and self-conscious, I began to work with doctors and my school to manage my condition. By high school, well-versed in my 504 Plan (a plan that documents how a school will provide support and remove barriers for a student with a disability) and armed with special pencils from my school district’s occupational therapist, I entered freshman year feeling more confident about my tremor than ever before. My accommodations were transformative in the classroom, but I quickly realized that in order to use them, I had to talk to my teachers about my 504 Plan. With that came a new valuable skill: how to advocate for myself.

The year I got my diagnosis of essential tremor was the year I discovered my fascination with the law. Advocating for myself in the classroom was my first taste of being an attorney. I was my own client, negotiating and listing my needs to meet my goal. As my high school career continued, it became clear that my tremor was not going away, but neither was my fervent desire to attend law school and spend my career advocating for others.

My tremor and love for the law have become intertwined. Quite literally, my tremor is there whenever I participate in mock trial and government programs. Public speaking is a battle between my expressive hand gestures and violent trembling. Once, I was even marked down in the National Judicial Competition for having “distracting hands.” While I was outraged at that scorer’s ignorant comments and point deduction, I returned the next summer to the National Judicial Competition to play a defense witness who was the victim of domestic violence. My performance included “believable shaking hands” and earned me two nominations for the Outstanding Witness Award, making me the first in Massachusetts history to get that close to winning a coveted glass gavel award.

Outside the courtroom, however, my tremor has taught me about law on a deeper level. I have a unique appreciation for special education law, as I understand the difference that accommodations can make in a child’s education and future. When I graduate college and law school, I hope to be right back where I am today. Yet, instead of advocating for myself in the classroom, I’ll be advocating for another student with a disability in court or at an IEP (Individualized Education Plan) meeting.

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Do you want to help support students with ET during their educational journey? Make a donation to the ET scholarship fund online.

If You Could Trade Your ET for Any Other Disorder, Would You?

Each semester, the International Essential Tremor Foundation presents four scholarships to students with essential tremor. The scholarships represent hope for the future, and provide support to these students during a pivotal time in their lives. As part of the scholarship application process, each applicant is asked to write an essay that answers the question, “How has essential tremor affected my life?” The following essay is from one of our fall 2019 scholarship recipients.

By Anna Grace Easley
2019 IETF Scholarship Recipient,
Student at William Carey University, Hattiesburg, MS

Anna Easley, 2019 IETF Scholarship Recipient

Like millions of others in the United States, I suffer from essential tremor or ET. At the age of two years old, my mom started to notice my hands shaking when I would go to reach for my toys. I didn’t realize that my hands shook until the age of four years old when I was learning to tie my shoes. From that point on, I knew that simple everyday tasks were slightly more difficult for me than they were for other kids my age. I would struggle to tie my shoes, put my hair in a ponytail, paint my nails or even color a picture. My tremors got worse with age and I began to notice that other people in my family, like my father and grandfather, had the same condition.

By the time I started high school, my ET got to the point where I started to get picked on at school. People at school would call me “shakes” and would laugh every time I would spill a drink or drop something due to my ET. It was at this point when my family and I decided that I should go see a doctor.

At the age of 14, I was diagnosed with essential tremor by Dr. Shankar Shiva Natarajan. He prescribed me medicine to help my ET, but the medicine could only do so much. The thing that I am most passionate about in my life is music and theatre, so when ET started to affect how I play guitar, how I held a microphone or how I was able to perform on a stage, I would get frustrated with myself because there was nothing I could do to control it. I got to the point where I would cry every time I went to the neurologist. Every time, he would tell me, “If you do not let your tremors bother you, they will not bother anyone else.” I took this advice and I would try to not let it affect me, but my tremor continued to affect how I viewed myself. I felt as if I was not fit to be a musician because of my condition, and the thought of that was devastating.

At my next doctor’s visit, Dr. Natarajan told me something that completely changed my perspective. He asked me, “If you could trade your ET for any other disorder, would you?” I began to ponder this question. I would not trade it for blindness, deafness, paralysis, amputation or any other physical disability. It was at this moment that I realized how truly blessed I am.

From that point on, I decided that ET is a part of my life, but it cannot dictate who I am as a person. I have made the choice to pursue music despite any difficulties I may face. Although ET has had a great impact on my life, I will continue to push through and face every challenge with a positive attitude.

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Do you want to help support students with ET during their educational journey? Make a donation to the IETF scholarship fund online.

Record Clinical Trial Enrollment Made Possible by IETF and Their Members

Patient recruitment is usually the biggest challenge in conducting clinical trials. Thanks to the International Essential Tremor Foundation and their members, Cala Health recently enrolled the largest therapeutic essential tremor study in record time.

By Kate Rosenbluth,
Founder/CEO of Cala Health, Inc.

About five years ago, my co-founders and I spun Cala Health out from Stanford University to develop a wearable therapy for essential tremor. We spent several months observing and interviewing patients, neurologists and neurosurgeons, and were captivated by the unmet need to give people back their hand control without undergoing brain surgery. The International Essential Tremor Foundation and its members gave generous time to helping us understand the condition and how we could help. We formed a company and began product development of a peripheral stimulation device worn on the wrist to interrupt the tremulous signal driving the tremor in the brain.

Photo of Cala CEO Kate Rosenbluth

Our careful research and development process brought us to the final stage, clinical trials. Clinical trials produce the most reliable data available for health care decision making. They follow strict scientific standards to protect patients and produce dependable study results. Oftentimes, the single greatest challenge in conducting a successful clinical trial is recruiting participants. Typically, most participants are recruited by physicians serving as Principal Investigators for the study, or by engaging advertising agencies to inform potential participants that a clinical trial is available. This can take months, if not years, and require significant investment in advertising.

Fortunately, Cala Health has partnered with the International Essential Tremor Foundation, who announced this research opportunity to their members nationwide. We immediately received interest from qualified participants who have been struggling with essential tremor for years and connected them with the leading neurologists in movement disorders who were participating in our trial. We have been so pleased with the response. Most recently, this generated and enrolled hundreds of patients into our PROSPECT study in record time. During the study, patients wore the therapy on their wrist like a smart watch and patterned electrical stimulation was delivered to the nerves through the skin twice per day over a three-month period. This fast enrollment enables a key milestone to share the results later this year and make this FDA-cleared therapy commercially available. 

People who take part in clinical trials are vital to the process of improving medical care. IETF is an essential partner to Cala Health informing the ET community of the clinical research opportunities to advance medical knowledge and patient care.

About Cala Health, Inc.

Cala Health is a bioelectronic medicine company transforming the standard of care for chronic disease. The company’s wearable neuromodulation therapies merge innovations in neuroscience and technology to deliver individualized peripheral nerve stimulation. The first indication for Cala Health’s wearable therapy is essential tremor, a disease experienced by more than seven million people and characterized by severe hand tremors. Visit www.CalaTrio.com to learn more.  New therapies are under development in neurology, cardiology and psychiatry. The company is headquartered in the San Francisco Bay Area and backed by leading investors in both healthcare and technology.

Research Brings Hope for a Brighter Tomorrow, and World Without Essential Tremor

We sometimes take for granted the vast history of medical research and its impact on human ailments and diseases. Most people have heard of polio and tuberculosis, which today are easily preventable with a vaccine. Organ transplants extend life for many and the pacemaker regulates the heart’s rhythm for people with irregular heartbeats. Physicians can remove cataracts and cancerous tumors, and use artificial insemination to help couples conceive.  And surgical options for essential tremor (ET), including focused ultrasound and deep brain stimulation, have enhanced the quality of life for thousands. None of these would be possible without medical research.

The International Essential Tremor Foundation (IETF) knows through continued medical research, there will one day be improved treatments and possibly a cure for essential tremor. So each year, we continue to fund research projects to address the nosology, etiology, pathogenesis and other topics relevant to essential tremor. Through promoting and awarding research grants, we also know we can stimulate inquiry into essential tremor (ET) by leading scientists.

IETF Research Appeal Graphic 2019

July is a time when we focus on essential tremor research and work to raise money for research grants. Since 2001, the IETF has dedicated more than $800,000 toward essential tremor research and we are not done yet.

This year, we presented a $25,000 research grant to Dr. Adrian Handforth with The Veterans Affairs Greater Los Angeles Healthcare System. His research project is titled, Evaluation of an a6ßy2 GABA Receptor-Specific Drug as Potential Therapy. It will explore the potential of developing a drug that mimics how low doses of alcohol can suppress the effects of tremor, but with more selectivity of molecular targets to try to avoid adverse effects found with other medications used for management of essential tremor.

Please consider supporting our “Shine a Light on Essential Tremor Research Campaign” this month. Watch for a special letter in your mailbox outlining how you can help. Or go online and make a donation.

Research provides hope for all of us, and means a better and brighter future for the next generation. Perhaps our scholarship recipient, Deirdre, summarized it best when she said:

New and ongoing research for ET gives hope to us young people. Even though our conditions may worsen over time, there are also so many ways that modern medicine can help us live our lives normally and we all need to work toward that goal together.”

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.

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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.

NETA month 2019 Logo

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.