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.

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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.”

My Shaking Made Me Feel Like I Was ‘Going Nuts!’

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 Jody,

My tremors started when I was 21. My daughter was almost one-year-old when I noticed my head feeling like it was shaking inside but not noticeable to others. I went to my regular doctor and said, “I think I’m going nuts… I feel my head shaking and it’s not stopping.”

My doctor sent me to a neurologist who tested me and I got the diagnosis of tremors. At that time it was just my head shaking; but it went from not noticeable to others to very noticeable within six months. I was prescribed an anti-seizure medication.

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Then I also started doing my own research on essential tremor. My mother-in-law saw an older lady in the hospital waiting room one day and noticed she shook just like me. She started talking to her and found out her doctor prescribed Botox injections. So I made an appointment with that doctor who diagnosed me with both essential tremor and muscular dystonia. She prescribed many different medications including muscle relaxers, and most of the medications had bad side effects.

After a few years I started Myobloc injections. Those worked for about nine years. I then went to the Mayo Clinic to explore the option of DBS surgery but decided against it.

I went a few years without seeing a doctor then found another specialist. We again started the process of trying to find a medication that would help relieve my tremors. Today I have exhausted all of the medications out there that they use to treat tremors.

“Over the 20 years of me having this I now have tremors throughout my whole body. My head shakes, shoulders, trunk down to my legs. I do not stop shaking at all.”

I am now doing Botox under an orthopedic specialist. I also see a chiropractor and use CBD oil when the Botox runs out of my system.

I work in an office setting full time and have a cleaning business on the side so I work seven days a week. In my office job we have changed a few things to help me get along easier. I have been at this job for 22 years so they have seen the tremors progress with me as the years have gone by. I use weighted pens and pencils. I have a standing desk now so I can move around as much as I need to. I feel better the more I can move. If I’m not working and just laying around at home I hurt – my muscles hurt, my body hurts. But, I can still move. Some days are harder than others. Writing is getting harder.

I’m amazed at how many people have had this condition their whole life. I sometimes have to remind myself of the people who can’t work or can’t write at all because of their tremors. Mine are bad but others have them much worse than me.

Go to a Doctor Who Listens and Believes in You

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.

NETA month 2019 LogoBy Lucy,

Gradual, insidious, and nasty are three words that I use to describe essential tremor (ET). I am an 84-year-old widow with ET everywhere. I am also hearing impaired and my speech is affected. I wanted to share my story to try to help others. I think the biggest misconception about ET is the general belief that it is a little condition for the aged, which is merely an inconvenience.

I am a retired junior high teacher and it was actually one of my students who made me pay attention to my shaky right hand. I knew I was shaking but I guess, like many others, I tried to ignore it. This was in the 1980s.

I asked my general practice doctor about my shaking. He just smiled and said, “You don’t have Parkinson’s disease.” But he didn’t give me a diagnosis or any treatment suggestions.

My tremor remained static for a few years. Then when I retired in 1995 it had moved to my right leg as well, but was not too noticeable. In fact, when my husband passed away in 1999, he was not aware of it. But, then it began to worsen.

I began doing some research online and disagreed with my doctor. I was sure I had essential tremor. He finally sent me to Akron Hospital and after some tests they said I was correct, but still no one suggested treatments, medications, or advice. I tried weighted eating utensils, but didn’t have much luck.

Soon shaking began in my arm and leg on my left side. I had given up my volunteer work with Hospice and concentrated on my hobbies: reading, tatting, needlework, and piano. I found myself withdrawing from any public functions and depression set in. The doctor gave me medications for depression and it helped some. Soon I quit cooking and got Meals on Wheels and used my microwave. My favorite coping method was spending time with my faithful companions, a cat and dog, and my Christian faith. My church still keeps in touch today.

In 2010 I just about wrecked my car when my arm spasmed. So I parked my car and called my kids. In a couple of months I was safely moved 130 miles away with my youngest daughter who is a trained caregiver. (My older daughter lives in Australia and my son in Texas.)

We have conducted some background research on our family and have found my niece is sure she has ET and my granddaughter, too. We think my father and sister did as well.

Since I moved I have a general practice doctor who believes me. He referred us to Wexner Medical Center (at the Ohio State University). I have officially been diagnosed with ET and almost had Deep Brain Stimulation surgery, but I decided not to. It just didn’t “feel” right.

I am on medication now but I don’t think anything is helping much. I am looking into the new MRI treatment since it is conducted nearby.

My advice to anyone who thinks they have essential tremor is to find a recognized specialist who listens and believes in you. Also, get involved in helping. I can’t do much now but when I die my brain goes to Yale for ET research.

P.S. It took me nearly four hours to type this.