Having a Positive Impact on Those Who Struggle with Lifelong Conditions

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 2018 scholarship recipients

 

By Deirdre Maciak,
Student Salem State University
Salem, MA

Essential tremor (ET) has affected me physically and emotionally, and has also played a role in my future career plans. I began noticing ET when I was in middle school, and was officially diagnosed as a sophomore in high school.

Photo of Deirdre Maciak, 2018 scholarship recipientPhysically it has affected me when I work out at the gym, play saxophone in my various school bands, and is worse when I’m tired or stressed out. I have tried a couple of medicines so far to treat it, and am working to determine what the right level of medicine is for me for now.

Emotionally it has affected my confidence level, especially when I realized how noticeable it had become. I sometimes hold off on activities I would like to do because of the ET, but am learning to manage the condition more proactively and look forward to being able to try new treatments in the future.

ET has also impacted my career choice to a degree as well. I am looking to pursue either nursing or biology in college, partly because I want to be able to have a positive impact on others who struggle with lifelong conditions. I also want to have the opportunity to either research new drugs or related treatments that would make the lives of those who deal with these types of conditions better.

I recently learned that a family friend, who is a research scientist, is actually working on a new drug for neurological disorders, which was very exciting. This type of work is intriguing to me.

I am very excited to start my college career this fall. While I know that ET will have some impact on me, I am becoming more confident that it’s a condition that I will be able to manage during these upcoming college years. I hope to both benefit from future ET treatments and, also have the chance to work on them as part of my future career path.

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Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.

Educating Others About Invisible Disabilities, Including Essential Tremor

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 2018 scholarship recipients

 

By Megan Hartley,
Student at Florida Southern College

When I was 15, I was diagnosed with essential tremor. In March 2018, my 15-year-old sister was diagnosed with essential tremor. This letter is for her.

You have heard all the negative experiences that have been a part of my diagnosis: the accusations that I stole my grandmother’s handicap because I couldn’t possibly have one of my own; being bullied because I got extra time on exams that I “didn’t need;” and not being able to walk after a long day. People will be cruel because they do not understand.

What I want you to know is that it isn’t something that has to define you or be completely negative; so many positives have come out of it for me. It has allowed me to better understand what it is truly like to have a diversity that no one understands. It has pushed me to try to educate those who do not understand invisible disabilities in a positive way.

In the spring of 2016, I was allowed the opportunity to be on the cover and to speak out about what it is like to have anxiety and essential tremor for the International Essential Tremor Foundation’s magazine, Tremor Talk.

At Florida Southern alone, in my role as a resident advisor, I have been able to design community-wide programs that encourage students to ask questions and to get knowledge about those diversities they do not understand. The series that went on to win community program of the year included invisible disabilities, culture and identity. I have had the opportunity to present at the Florida Resident Advisor Conference and took home an award for my presentation about invisible disabilities inclusion in the residence halls.

Quote about invisible disabilitiesThis semester, I am partnering with other campus organizations to promote invisible disabilities week on campus in October. I have had the opportunity to do multiple projects and papers about disabilities and their relationship to the world around us. You are able to combat the negativity by allowing it to be an education opportunity for those around you.

Overall, what I want you to understand, is that, for me, the positives outweigh the negatives. I believe that essential tremor has allowed me to be a more compassionate person. Though I cannot speak to every diversity, I feel as though I can understand what it is like to have your identity questioned simply because it is not seen from the outside.

Though some days the tremors make it difficult to stand, I will always stand up for those who need it.

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Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.

 

 

‘It’s the Man Who Overcomes Adversity that is the True Champion’

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 2018 scholarship recipients

 

By Robbie Holder,
Georgia Southern University

I do not remember a time when my hands did not noticeably shake. I was diagnosed with essential tremor (ET) at the early age of 14. While I recognized I was not the only Photo of Robert Holder, 2018 IETF Scholarship Recipientperson to experience tremors of this nature, I didn’t know anyone my age who suffered from this diagnosis. My other has ET and her grandmother suffered from it also; therefore, my diagnosis was not unexpected as it is hereditary. Since that time, I have reconciled myself with the knowledge that ET isn’t curable. I have found peace with the fact that I will always have a tremor. I haven’t used my diagnosis as an excuse to quit or avoid certain tasks, but have chosen to work harder in order to succeed.

My mother is an artist and while having a tremor makes it more difficult for her to create art, she doesn’t let it stop her from doing what she loves. She has to intensely focus on the task at hand. She has made adjustments to accomplish daily tasks. Like my mom, I have learned to adapt in order to accomplish tasks that come easily for others. I struggle to open packets, eat with a spoon, peel shrimp, button clothes, brush my teeth and insert contacts. Utilizing both hands, I have more control of my movements.

ET can be frustrating. I enjoy physical activities and working with my hands. My goal is to study exercise science. ET makes it difficult, but not impossible.

I have not let my ET keep me from doing the things I love. I truly believe it’s the little things in life that make a difference. With my family’s help, I built a Little Pantry for my community during my senior year in high school and I continue to run it today. Those in need obtain food and household items without the stigma of being seen as helpless. Others in the community can make a difference by restocking the pantry. Despite the frustrations I encountered during the pantry’s construction, I feel that I have made a difference and continue to do so.

I have been inspired by a quote that I keep close to my heart. It’s by Jock Ewing:

“Any man can win when things go his way. It’s the man who overcomes adversity that is the true champion.”

The challenges I face daily have made an impact on my life. I have to worker harder, persevere when faced with challenges, and find strength from within. These challenges have made me resilient, hard-working and confident. I choose to be strong. I have a desire to succeed and a strong work ethic. I finish what I start and I don’t let anything get in my way.

I know ET will always be a part of my life, but it will not define who I am. I choose to overcome.

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Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.

 

 

Essential Tremor Has Strengthened My Resolve

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 2018 scholarship recipients.

 

By Graham Gaddis,
University of Tennessee

As the sixth child in a family of 16 children I am sometimes overlooked, but if we met for a personal interview you would learn how capable I am.

Photo of Graham Gaddis, IETF Scholarship RecipientIn the shadows and in the quiet, I have found an identity, and much of this identity has developed from facing head-on the difficulties of living with essential tremor (ET). I realize that having ET has actually strengthened my resolve to tackle life’s challenges and achieve my personal goals.

The process of living with ET has also enabled me to focus on my genuine priorities. I don’t have the time or the energy to be pressured to be someone else or simply please someone else. As a result of ET, I have learned to stand in my own skin and really pursue my own interests. For example, I am the fifth kid to go to college in my immediate family. My father, aunt and uncle are physicians. I have three sisters who are registered nurses and my brother is studying engineering. Therefore, most people thought I would enter college in a STEM field (science, technology, engineering, math). But my future dreams include farming and food production. I have chosen to major in a field that is completely new to my family, but that I am sincerely passionate about. I think this boldness to pursue a degree unfamiliar to my large extended family has developed as I found courage dealing with my essential tremor.

It has not been easy to struggle daily to spread peanut butter on my sandwich bread, assemble a bookcase with 80 screws dropping them over and over again, or have to practice, in private, my penmanship so that it would be legible. I don’t really like that I spill a drink if it is too full. These things are not “fun”, but in the scope of the greater things in life I can still do everything that God has called me to do. I can shower those whom I love with kindness. I can contribute to my community and have a legacy of faithfulness. I can be sympathetic to the trials and difficulties others face and help in their time of need.

I know I can walk through the challenges of having essential tremor and I can still find joy in all of the areas of life that really matter.

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Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.

 

Research for Essential Tremor Gives Hope to Young People

By Deirdre Maciak
IETF Scholarship Recipient

I was only 16 years old when I was diagnosed with essential tremor. Up until that point, I don’t think I ever really registered how young I was. I had started driving, going out with my friends without supervision, and doing all the things that are expected of teenagers finding their way in the world. It’s an incredibly careless time in one’s life—there is so much ahead of you that the lines between the past, present and future are blurred.

Photo of Deirdre Maciak, IETF Scholarship WinnerMy main goals were always so clear to me. I wanted to get through high school consistently getting better at playing saxophone, study harder and get better grades, get into nursing school, and come out at the end with my dream job. But, being told that you have a chronic condition, one that won’t go away and will probably only progress over time, will bring even a busy-minded teenager to a halt.

Suddenly I had to reevaluate everything that I wanted in life. My diaphragm was spasming too much to have a good control on my air supply while playing saxophone. My physics class only had stools, and because there was no support, I spent more time trying to control my shaking core than paying attention to the teacher. I had a lot of questions. How am I going to be steady enough to draw blood when I’m a nurse? And, why did this have to happen to me, a 16-year-old girl, before I could achieve any of my dreams?

I’m not the first or last teenager out there whose plans have been derailed in some Quote from Deirdre Maciak about the importance of ET researchcapacity due to essential tremor. But, I am part of a generation of people with the condition who have better access to experimental treatments due to research and new discoveries.

Working with my neurologist, I’ve tried one medicine so far, but the side effects were difficult, so I’m exploring other options and I expect to need some of the new innovations in my lifetime for sure. Knowing that there are options out there to help control the frustrating symptoms has helped me put everything in better perspective.

Today, I follow what’s happening with ET by reading the International Essential Tremor Foundation (IETF) website, and watch what hospitals in my area, such as Brigham and Women’s, are doing with focused ultrasound. I was also excited to learn that a family friend, who is a research scientist, recently starting working for a company that is hoping to release a new drug that would be a big step in helping people with neurological disorders including ET. They hope to know this fall if they receive their next approval – and I am optimistic that it can help me and people of all ages who are dealing with this condition.

I was accepted into nursing school and start this fall! So despite this condition, and maybe also partly because of it, I’ll give it my all with the hope of helping people in general, and possibly those who suffer specifically from lifelong conditions as I do.

I still have a lot of questions. But, the new and ongoing research for ET gives hope to us young people, that 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.

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July is a time with the IETF draws awareness to its many research initiatives: funding research grants, advocating for more research on essential tremor,  recruiting for research studies, and more. Your generosity is the reason the IETF is able to carry out these initiatives and work toward improving the quality of life for every generation living with essential tremor. Help us keep hope alive. Donate today. 

 

 

Essential Tremor Follows Madison to College

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 spring 2018 scholarship recipients.

 

By Madison Young
Student at Arkansas Tech University
Russellville, AR

I knew when I went to college that my essential tremor would come with me and life would be something different than what I am used to. The friends and people I have been around have seen my hands and arms shake for years. Now there would be new people. Plus, the stress of college would kick up the numbers of tremors I have based on the amount of stress on my body. I knew I could handle it or hoped I could.

I am a rehabilitation science major/pre-physical therapy so there will be no easy courses, but I also know what I want to do with the rest of my life. I am not going to let a little tremor disorder dictate my path. Right now, I am in a rehab science class and it is all about how to help people with disabilities – how to cope, adjust and react. I had no clue going into this class that I would learn how to adjust to my own.

Yes, I was diagnosed when I was 13, but I have never thought about how this would affect my life long-term, or how I should or would deal with it. I have only thought about how I am just a girl with a little tremor disorder. I honestly haven’t spent much time considering the positive and negative ways I have reacted to having ET. Truthfully, I have continued to think unrealistically, that I could get better. Only recently have I started to adjust to thinking that this is my life, and this is how it is going to be, and it will be progressive. This acceptance and so many new things I have learned about myself and others are helping me move past the fact that I do have this disability.

I could compare having essential tremor to being left handed (I happen to be left handed) or having a hitch in your step. People do not notice it for awhile; they think they see some shaking, but dismiss it. Then they see it happen again, and again, and once they “really” see it, they can’t not see it. My new friends in college didn’t see it for awhile. Now they are constantly trying to see it – see how bad it is, wonder if they can do something to make it better and ask me questions. I know that it is all with good intentions, but it is annoying at times. It makes me wish that I had never confirmed what they thought they were seeing. I could have left the elephant in the room. However, we all have our disabilities, disorders and differences. I have decided it can be looked at as a way to connect with people and bond in a way that others cannot. College kids . . . we all have things that make us self-conscious, but we move past those thoughts together and use our newfound friendships to build a support network and celebrate the things that make us unique. Carry on world. I’m going to be just fine!

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Would you like to support students with ET during their educational journey? Make a donation to the ET scholarship fund online.

 

Comprehensive Meeting Focuses on Tremor Disorders

By Shari Finsilver
IETF Board Vice President

Calling all tremor patients … I have some great news. We are in very good hands!

I had the privilege of attending the 1st International Tremor Congress in New York City on May 11 & 12. I must say, I was totally blown away . . . by the level of research that is currently being conducted around the world, by the wide age range represented, and by the organizational excellence of the entire meeting.

The goals of the conference were:

  • Formulate an evidence-based approach to optimize the treatment for tremor disorders.
  • Develop evidence-based scientific knowledge for the future clinical study design in tremor disorders.
  • Describe the up-do-date clinical diagnosis and treatment in each tremor disorder.
  • Indicate the cutting-edge scientific discovery for tremor, and also current tremor therapy development.

Among the approximately 200 people attending this inaugural conference, there were the experts present . . . those who have created the science of tremor research, whose names grace hundreds of medical journal articles, as well as the textbooks used by the numerous students whom they have all mentored. Then there was the next generation of tremor researchers . . . those who are conducting novel, original studies, leading the way with their brilliant ideas. Also present were students including students in the fields of neurology, movement disorders, public health, etc. They were there to learn, collaborate, and be challenged to continue this very important work. Since much of the successful research is a collaboration between academia and industry, many of those industry representatives were also present, ready to learn with the rest of us.

The first meeting day was devoted to science. This included research projects involving the circuitry of the brain, a focus on Purkinje cells, on climbing fiber synapses, and on neuroimaging, just to name a few areas of interest. The second day focused on the current and emerging therapies, ranging from medications under development for tremor control, to surgical interventions (both invasive and non-invasive,) to wearable devices that can improve tremor control.

The IETF was proud to be one of the many sponsors of this first Tremor Congress. A huge thank-you goes out to the course directors and their committee:  Sheng-Han Kuo, M.D. (Assistant Professor of Neurology, Columbia University), Elan D. Louis, M.D., M.S. (Professor of Neurology and of Epidemiology: Chief, Division of Movement Disorders, Yale University), and Ming-Kai Pan, M.D., Ph.D. (Assistant Professor of Medical Research, National Taiwan University). And, also to the faculty, whose presentations were outstanding.

The Determination to Keep Fighting the Challenges of ET

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 spring 2018 scholarship recipients.

By Brogan Speraw,
Freshman at Ohio University,
Athens, OH

As I enter my freshman year of college, I’m anxious for the trails ahead. What classes to take, what will finals be like, how different will the classroom setting be from the one I’ve grown accustomed to. But one tends to worry me more than the others: how will my tremors affect my college life?

My tremors make my penmanship very poor, and my fine motor skills suffer as well. This has caused many challenges in my life, including struggling in art classes due to my inability to draw effectively. In the past, my classmates would ridicule me for my shaking hands by making comments about how I shake or how I must be nervous, or how I could be used as a seismometer (an earthquake detector). But, being the person I am, I have learned to take the ridicule and laugh with them as well, often times joining in and having a better time because of it. I have had to learn how to explain the shaking of my hands. With age, I have also learned not to be embarrassed, but proud of the strong person I have become because of my condition.

Normal everyday tasks for most tend to be a challenge for me, one of them being eating in public. I tend to choose what I eat in public very carefully. As I’ve gotten older, I’ve also learned how to live with eating and tremors significantly better, more often than not, ordering foods that I know will challenge me simply for the challenge itself.

I have a 504 plan that will follow me throughout college and the workforce. My disability will never go away, but I haven’t allowed this disability to hold me back. My neurologist predicted that I wouldn’t be able to write by my freshman year of high school, but I continued to write daily up until my junior year. It was during my junior year that I had to start doing a majority of my work by typing on a laptop. For my tests with answer choices that need bubbled-in, the school provides me with a scribe. Although this disability is a daily struggle, I have maintained a GPA of 3.967.

During college, I will continue to refuse to allow my disability to hold me back. It may be a challenge, but it is a challenge I intend to take on wholeheartedly, doing my best to make sure I succeed in all my academic endeavors.

I have been blessed with the determination to keep fighting the challenges that have been put in front of me, therefore being able to complete whatever I put my mind to.

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Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.

 

 

ET Will Not Prevent Me from Achieving My Goals

Each semester, the International Essential Tremor Foundation presents four college 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 spring 2018 scholarship recipients.

By Kelley Cordeiro
Doctoral Student at Molloy College
Rockville Centre, NY

How has essential tremor affected my life? I could answer this question by describing the challenges it creates trying to control my trembling hands with even the smallest tasks, like threading a needle, counting out change, applying makeup, typing, or measuring ingredients, just to name a few. I could talk about how much I notice my tremor at the end of a long day, when I try to unwind by reading a book or watching television, but I have to concentrate on trying to keep my head still. This becomes even more difficult when my head trembles on my pillow at night, making relaxation and sleep a conscious effort, and often an elusive goal.

I might answer that having ET has caused me to answer questions for my children about why I am shaking, why grandma shakes too, or the most difficult question, “will I shake like that when I grow up?”

There are so many possible ways to answer the question of how ET has affected my life. My favorite answer is that is has NOT affected my life. I am the mother of three wonderful children. I chose a mid-life career change to afford me the opportunity to be a stay-at-home mom, but also involved returning to school at an advanced age. I completed my master’s degree in a new field with a 4.0 GPA. I am now pursuing my doctorate degree in the field of education, with the goal of being an agent of change in diverse learning communities.

I take on extra teaching opportunities to help cover the costs of my tuition, which increases my stress level, which increases my tremor, but which is not an excuse I am willing to let stand in my way, or prevent me from achieving my goals.

Will my children develop a tremor as they grow up? What is the best way to answer this question for my children? Research indicates that there is a strong chance that they may develop this familial condition. So, when I respond to my children I want to give them an honest answer, supported by the evidence of my example: Yes, you may develop essential tremor, but it doesn’t have to affect your life!

I want to thank the IETF for the opportunity to be considered for a scholarship, which can help me achieve my educational goals. I would like to say that ET has not affected my life, but the IETF has!

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The deadline for fall 2018 scholarship applications is May 1, 2018. Application information is available on the IETF website. Interested in supporting students with ET during their educational journey? You can donate online.

 

ET Has Affected 5 Generations in My Family

By Shari Finsilver,
VP of the IETF Board of Directors

Increasing awareness about essential tremor (ET) has been my passion for almost 20 years.  But, I must confess … I was not very open about my tremors prior to this. In fact, I did everything imaginable to hide them, even from my parents!

My courage came from all the members of my support group. It is often said that when we volunteer, we get much more back than we give. Well, that was so true in my case when I decided to start a support group in Michigan in 2000. I marveled at the candor, courage, and self-pride in many of those members and, eventually, decided to follow their lead to become more open about my own ET.

Joining the IETF Board
When I was invited to join the IETF Board of Directors in 2001, I found another platform that I could use to further raise awareness, while also getting involved in education programs, fundraising, and research. I am committed to expanding the work of the IETF, the most recognized organization helping ET patients and families.

ET began challenging my life at 11 years old. I’ve heard it said that those of us with ET are much more intelligent and creative. Well, I’m not sure I would go so far as to say that … but I did become very creative in developing ways to cope with these troubling tremors! When the IETF compiled a list of coping tips, I was able to share all of mine with all of you.

The Choice to Have DBS Surgery
After having lived with increasingly challenging ET for almost 40 years, I decided to have deep-brain stimulation (DBS) surgery in 1999. DBS changed my life.

ET has, so far as I know, affected five generations in my family. I will continue to do everything in my power to help those of us with ET get more effective medical treatments, increase awareness so the public doesn’t misjudge and label us, better educate the medical community, and fund research that will discover a cure.

Join Us to Help Raise ET Awareness
I hope I can count on each of you to do something that helps the ET community. So many great ideas are listed on the IETF website. If all of us raise our voices about ET, we can educate the world.