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.

 

Are Essential Tremor and Parkinson’s Connected?

It’s a common misdiagnosis. Someone notices a tremor in their hands or body and automatically they think they have Parkinson’s disease. Some have said their doctor prescribed a Parkinson’s disease medication for them until they discovered the correct diagnosis was essential tremor (ET). And sometimes a person is diagnosed with ET when they are actually in the early stages of Parkinson’s.

Parkinson’s disease and ET will always be connected because of their similar physical symptoms. There is more public awareness about Parkinson’s, but ET is eight times more common. At the International Essential Tremor Foundation, we hear from individuals who have both conditions.

So what are the differences? How can you learn more? One way is to take part in the IETF’s upcoming FREE teleconference, “ET vs. Parkinson’s: How Do They Differ?” Mark your calendar to join us:

WEDNESDAY, APRIL 18, 2018
12 p.m. pacific time
1 p.m. mountain time
2 p.m. central time
3 p.m. eastern time

Teleconference Speaker
Dr. Holly Shill

Dr. Holly Shill, chair of the IETF medical advisory board, will be the teleconference speaker. Dr. Shill is the director of the Muhammad Ali Parkinson Center at Barrow Neurological Institute in Phoenix. Her expertise includes the diagnosis and treatment of involuntary movements, essential tremor, Parkinson’s disease, Huntington’s disease, dystonia, and ataxia. IETF Executive Director Patrick McCartney will be the teleconference moderator.

How Can You Participate in the Teleconference?
If you’ve never participated in a teleconference before, don’t worry, it’s easy! The entire conference is conducted over the phone; no internet or computer is required. You can listen in by yourself, or host a teleconference party in your home and put us on speaker phone. (Then you can have your own group discussion afterward!)

But first, give us a call, 1-888-387-3667, or go online to register. Reservations are required because our capacity for callers is limited. When you register, you’ll receive a call in number and conference code. And, you’ll have the opportunity to give us a question or two that you would like to have answered during the teleconference. Here are a few questions that have already been submitted:

  • Is Parkinson’s more in the feet and ET in the hands?
  • Does ET and/or Parkinson’s affect your memory?
  • What percentage of people with ET develop Parkinson’s?

Our Past Teleconferences Are Online
The IETF conducts several teleconferences each year as part of its educational offering to people with essential tremor. All teleconferences are recorded and posted on our website so anyone can log on anytime to listen to past ones.

We also host educational forums several times a year in cities throughout the U.S. Our next forum is scheduled for June 23, 2018 in Minneapolis. You can read more about this online.

The IETF’s goal is to provide hope to the essential tremor community through awareness, education, support, and research. These teleconferences are one way we carry out the “education” part of our mission.

We know that by providing educational programs, we can continue to communicate the latest information about essential tremor. Join us on April 18!

High School Student Develops App to Detect Parkinson’s and ET

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High school student Erin Smith has developed an app that helps to diagnose Parkinson’s disease and possibly other neurological conditions through facial recognition. She serves as an example of how young people are stepping up to invest themselves in making a difference in the lives of others through their ingenuity and motivation. Here is her story.

By Erin Smith.
Senior at Shawnee Mission West High School
Overland Park, Kansas

About two years ago, I was watching a video by the Michael J. Fox Foundation when I noticed that whenever Michael J. Fox or another Parkinson’s disease patient would smile or laugh, it came off as emotionally distant. Further, as I talked to Parkinson’s caretakers and clinicians, they reported similar observations in their loved ones years before diagnosis. As I read medical studies, I found that the often overlooked sections of the brain that undergo the earliest changes in Parkinson’s patients are the same parts involved in the formation of facial expressions.

My mind instantly went back to a TV show I had watched as a child called Lie to Me,  where a deception expert would solve crimes by studying facial expressions to determine if people were lying. I wondered if facial expressions could have similar health care implications and provide external manifestations of neurological pathology. 

FacePrint App is Born
I then launched a study in partnership with the Michael J. Fox Foundation Trial Finder to expand my research on a national level. Using the data I collected, I developed FacePrint, a tool to diagnose and monitor Parkinson’s disease using the early stage facial muscle indicators that I identified. FacePrint provides an inexpensive, remote tool for early stage Parkinson’s disease, requiring only a computer and webcam. Further, FacePrint is compatible with facial recognition used by Snapchat and Facebook, creating a selfie that could save your life.

Differentiating Between Parkinson’s and ET
However, after developing FacePrint, I quickly began to notice distinct facial movement differences in patients with other neurological diseases. I started formulating the idea that facial behavioral biomarkers could non-invasively differentiate between Parkinson’s disease and Essential Tremor patients. My new mission has become to create a robust, differential diagnostic and monitoring tool for Parkinson’s disease and Essential Tremor patients. It is my hope that developing accurate diagnostic and monitoring systems for these two diseases will lead to improved, earlier treatment options and ultimately a cure.

Ridding the World of Neurological Disorders
Beyond my goals for my research from a medical perspective, I also hope to create a source of hope.

I firmly believe that change occurs on an individual level. It is one person doing one thing different one time. It is one person caring about one topic and doing everything that he or she can to make a difference in that area. It is one person taking one step forward one time.

I believe that the journey towards a cure for Essential Tremor and Parkinson’s disease will follow the same pattern. However, while change occurs on an individual basis, impact occurs when we all come together to leverage that change. My work is just one piece of the larger puzzle. We must all come together and put the pieces together. It will take everyone devoting their time, efforts, and stories to lead to a day when Parkinson’s disease and Essential Tremor are cured conditions. Although it is easy to become discouraged, my research has filled me with a deep sense of optimism for our future. There are researchers, patients, caretakers, clinicians, and everyday citizens around the world who are making remarkable progress and strides in this field. We are not marching alone. Rather, we are marching hand-in-hand, striving towards the day when our collective impact will create a world without neurological disorders.

YOU CAN PARTICIPATE IN ERIN’S STUDY

Erin is expanding her original research to include essential tremor and persons with no neurological disorders to determine if this test (her app) can easily differentiate between the two, possibly saving patients years of misdiagnosis. The study takes about 10-15 minutes and requires a computer with a webcam. It typically works best on Chrome, which can be easily downloaded online if not already installed (see link below). If you have ET or Parkinson’s Disease please take this test and please encourage your friends and family members without either disease to participate as well.

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.

 

 

Being a Child with ET is Like Being a Tiny Sapling in a Windstorm

By Allison Dyke,
Student at Kuyper College

Allison Dyke

Having essential tremor is like being a tree with leaves shaking uncontrollably in the wind. Even though your roots are strong, you are unable to control the movement of your branches.
However, being a child with essential tremor is like being a tiny sapling stuck in a powerful windstorm. You are not fully developed and your roots have not been completely planted.

ET Diagnosis
Since the age of four, I have battled with essential tremor. My shaky hands and legs made tasks such as eating, tying shoes, and riding bikes difficult to complete. I was just learning how to do these activities, which can be challenging without having a movement disorder. While these tasks were strenuous, the hardest part about being a child with essential tremor was other children and adults jumped to conclusions without understanding what essential tremor is.

“She’s just stubborn,” was often coldly stated to my parents as an explanation of why I was failing at making a perfect bow with my shoelaces. If I wasn’t being “stubborn” I must be either nervous or cold. Fine motor skills were frustrating to master and I became withdrawn from participating in physical activities. It was hard to understand why I couldn’t do what other children my age could do. With supportive parents, I was encouraged to never give up. The saying at my house is, “Where there is a will, there is a way.”

Soon I found an activity where shaking didn’t matter, swimming. It helped rebuild the confidence that this disorder had taken away. I found ways around difficult tasks, such as using assistive devices to improve my penmanship or supporting my elbow when applying makeup. It was clear that the physical and emotional effects of essential tremor were not going to dictate my future.

Connecting with the IETF
Then at sixteen, I discovered the International Essential Tremor Foundation, and wish I would have found them sooner. Their website provided informational downloads that I gave to my teachers and school administrators, so they could better understand this disorder. I connected with other kids my age who were going through the same experiences. IETF encouraged me to reach out to my community by organizing awareness walks and starting a support group. And they provided me with a college scholarship. With their support, I have met wonderful people who understand what having tremors is all about and I know I am not alone.

Now I’m nineteen and people still ask if I’m cold or nervous. But, I’ve learned that sharing my experience and educating others about essential tremor gives me an opportunity to explain that this condition is not just for older adults, but impacts young people as well. An estimated 10 million people in the United States are affected by this condition, yet very few have heard of it or understand it’s impact. Through awareness, I’m no longer a tiny sapling; I am strong oak supported by a dense forest away from the wind.

Editor’s Note
Allison is one of thousands of children and young adults around the world who struggle to live normal lives with essential tremor. She is a former IETF Scholarship Recipient. The scholarship program is one of many support programs conducted by the IETF. Your donations help support these programs and people with essential tremor. Donate today. 

No Boundaries, No Favorites. Essential Tremor Has No Familiar Face.

By Tammy Dodderidge, IETF Marketing and Communications Manager

Who do you picture in your mind when you think about someone who has essential tremor? Chances are, it’s a senior adult or a grandparent. The reality is essential tremor has no familiar face. It afflicts people all ages and races. While senior adults struggle with it, so do middle-aged adults, teens and even toddlers. It doesn’t discriminate based on the color of your hair, or eyes or skin.

This is our message during National Essential Tremor Awareness (NETA) Month in March. We want people to understand that ET has no boundaries. It doesn’t play favorites. It is a serious, debilitating condition for more than 10 million people around the world.

Background on NETA Month
Thanks to a three-year effort by the International Essential Tremor Foundation (IETF), in 2010 Congress passed a House resolution that officially designates March as National Essential Tremor Awareness Month. This month gives ET a platform. Most people have heard of Parkinson’s disease and the physical tremors associated with it, but not many have heard of essential tremor. We need to let them know it exists and then educate them about the needs of people with ET.

The next time you are in a crowd, look around and chances are, someone there has ET. You won’t know it because it’s something that people work hard to hide. You won’t know it because people are embarrassed by it. You won’t know it because people fight it and deny it. You won’t know it because many people who have ET suffer depression and isolate themselves so they don’t even leave their houses.

Take Action
What can you do to take part in NETA Month? Many, many things!

  • The IETF has created some special NETA Month social media banners specifically for Facebook and Twitter. Download them from our website and use them on your social media sites during the month of March (as the cover art or just share them with your friends and followers).
  • Order one of our NETA Month posters and hang it in a prominent area where people will notice it: your church, the grocery store, the library, your office. When someone asks, “What’s this poster? What is essential tremor?” you will have done your job in raising awareness!
  • Watch this Tremor Talk blog site during March. We will be featuring some guest writers who have ET, work in the ET community and advocate for people with ET. Their first-hand stories promise to be insightful and educational – and heartfelt. Share these blogs on your social media sites, or send the links to your friends by email. RAISE AWARENESS!
  • Hold a Do It Yourself (DIY) Fundraiser to support the work the IETF does toward education, research and advocacy. We have a list of DIY fund raising ideas on our website, and we also have special DIY  fund raising posters you can order from us for free to advertise your events.
  • Watch your mail for a letter from the IETF and make a donation to receive an NETA Month t-shirt and/or tote bag. These items are one more way to get ET in the public eye. Wear your shirt proudly and use your tote when shopping, or for carrying items to and from work. If you are not on our mailing list, you can join our mailing list online.

Once we all begin to see ET as a condition that impacts millions of people all over the world, we will begin to realize the need for more research that will lead to new treatments, and hopefully someday, a way to prevent or cure it for everyone.

Speak up, speak out and let’s rock this year’s NETA Month!

 

New Year, New Opportunities

Patrick McCartney
Executive Director

As we kick off 2018, we are excited about the New Year and the opportunities to promote our mission to provide hope to the essential tremor (ET) community worldwide through awareness, education, support, and research.

The IETF is celebrating its 30th anniversary in 2018. We will kick off the celebration in March, which also happens to be National Essential Tremor Awareness month. There are a variety of ways for you to advocate for more ET awareness and education in your community. To learn more about how you can get involved here.

When we ask ET patients what they would like to see the IETF focus its efforts on, one subject comes up consistently: research to help find a dedicated treatment(s) for ET and, hopefully, someday a cure.

With the generous support of our donors,
we have been able to fund more than
$750,000 in ET research.

 

If you would like to learn more about the studies your donations have funded and the results they have achieved, you can find more information here.

Also, there are several clinical trials currently taking place that focus on ET-specific medications and wearable devices. If you are interested in participating in one of these trials check out the list of programs on the IETF website. You can also visit www.clinicaltrials.gov for easy access to free information on clinical studies for a wide range of conditions including ET.

Another great way to get involved is through a local support group. The IETF currently has more than 60 support groups around the world. We have a listing of all the supports groups on our website here. Or take part in our online support group through Facebook.

If you can’t find a support group in your area and Facebook isn’t your thing, we encourage you to consider starting a support group. We have all the tools to get you started and help you promote the meetings.

As always, we thank you for your support of the IETF and the ET community. The IETF has so many resources to share with patients, doctors, family members, and caregivers. We hope you will spread the word and help us continue to educate people on the most common movement disorder in the world.