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!

***********

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!

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. 

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.

 

 

Share Your ET Stories with Me

Hello to everyone in the essential tremor community!

I am new to the International Essential Tremor Foundation and wanted to introduce myself. I am the new marketing and communications manager. My role involves development of messages and stories to educate the public about essential tremor and the impact it has on more than 10 million people nationwide. I serve as editor of our magazine, Tremor Talk, and our Tremor Gram enewsletter. I oversee our social media sites, Facebook and Twitter, and manage our website, among other responsibilities.

I must confess I had never heard of ET before I applied for this position. How could that be? It impacts so many people and yet I was not aware. But I am catching up. Each day I read and hear stories from people of all ages who are living with ET. Just this week I was reviewing the applications from our scholarship recipients and was in awe of their positive outlooks, and also saddened by what they have had to endure. One student was diagnosed at age six, so he has had little experience of NOT having ET. One is a mother of three who said her biggest challenge has been answering her children when they ask, “Will I shake like that when I grow up?”

I am proud to work for an organization that is serving the ET community with awareness and education initiatives, and support, like scholarships. And last year we donated $75,000 toward research initiatives to further better treatment options for ET.

The learning will continue for me, and I am asking all of you for your support in this area. I would not be able to do my work without the ET community at large who share their stories of hope, frustration and, sometimes despair. No, some stories are not happy ones, but these are the ones that may resonate with others who are battling each day. I will do my best to share these stories and keep the lines of communication open. And, I look forward to the day when I can write that story about the breakthrough in research that will help everyone. I know it’s coming . . . keep the faith. . . and keep in touch with me.

I look forward to hearing from all of you out there. Write to me at tammy@essentialtremor.org.

 

 

IETF Welcomes New Executive Director

Catherine Rice webThe IETF Board of Directors announces that after 18 years of leadership, Catherine S. Rice is retiring as Executive Director of the organization.  Throughout her tenure, Cathy has increased the IETF’s reach to over 100,000 people around the world.  Cathy, along with now retired Kansas House Representative Dennis Moore, in 2010 achieved formal designation for the month of March as National Essential Tremor Awareness Month.  In the last 10 years, she has facilitated 380 free ET patient education events in cities across the U.S., educating over 35,000 people.  Cathy also established a college scholarship program for students having a diagnosis of ET, as well as an ET research grant program that has awarded $1 million, thus far, for promising ET studies conducted by medical investigators.  We cannot thank her enough for her vision, dedication, and commitment to the IETF.

Patrick photoTo continue our desire to further our mission, the Board is pleased to announce Patrick McCartney as the new IETF Executive Director, effective Aug. 17, 2015.  Patrick brings over 20 years of experience with non-profit organizations.  He most recently served as the Executive Director of the Kansas City Kansas Community College Endowment Association.  Previously, Patrick was Vice President of Marketing at the Kansas City Kansas Chamber of Commerce.  His work experience focused on board relations, fiscal management, marketing and communications, and fundraising.  Please join us in welcoming Patrick to the IETF.  With your support, we are confident that he will continue the excellence of the IETF.

One of Cathy’s passions at the IETF was to recognize the achievements of students dealing with ET.  To honor and help continue Cathy’s work with college students, the Board is pleased to announce the establishment of the Catherine S. Rice Scholarship Fund.  This fund will be used to award four scholarships to deserving students both in the fall and winter semesters.  For anyone wishing to recognize the dedication of Cathy, the Board encourages donations to this fund, in her honor.  Information about the fund is available at www.essentialtremor.org/scholarships or 1-888-387-3667. Donations and/or notes to Cathy can also be mailed to IETF, C/O Catherine S. Rice Scholarship Fund, PO Box 14005, Lenexa, KS  66285-4005.

The IETF awards four scholarships to exceptional students with ET

IETF Scholarship Recipient Karissa Hartzell

The International Essential Tremor Foundation is pleased to award four students who are affected by essential tremor with $500 scholarships for the 2015-2016 academic year:  Tyler Criswell from Altoona, Ala.; Karissa Hartzell from Andover, Ohio (pictured left); Katie Merrill from Arvada, Colo.; and Hannah Spence from Colchester, Vt.

“These four students exhibit impressive qualifications based on academic and extracurricular activities in their communities and will become outstanding, future leaders in helping create more awareness about essential tremor,” said Catherine Rice, Executive Director of the IETF.

People with essential tremor have to be adaptable. Daily activities are often difficult, if not impossible, to accomplish without some type of assistance. It takes a special type of person to look obstacles in the eye and continue to push forward, regardless of the amount of time or effort it takes. It takes drive, passion, and a strong sense of self, and these four scholarship recipients truly display what it takes to be successful in their college careers while coping with ET. Read more about their stories here.

IETF scholarships are awarded to qualified students of all ages who have been diagnosed with ET, to lessen the burden of higher education. The scholarship can be used for supplies, books or tuition at licensed, accredited institutions of higher education (including trade schools) and are paid directly to the educational institution. For more information about the IETF scholarship program, please visit www.essentialtremor.org/about-the-ietf/scholarships.

 

Where Has My Button Been?

Omaha 2 WHMBBHello Everyone!

We had so much fun at the Omaha Education Seminar and we all learned a lot from Drs. Torres-Russotto and Follett. We want to give both of them a huge thank you for sharing their time and expertise about ET. To learn more about the Movement Disorders Center at the University of Nebraska in Omaha go to http://www.unmc.edu/neurologicalsciences/movement_disorders.htm.Omaha Event WHMBB

Please join us in Irvine, CA for the upcoming event on Saturday, April 27. You can learn more at http://www.essentialtremor.org/Seminars. I would love to meet and share in the experience with you.

Coping with the challenges of ET can be difficult for children

Essential tremor affects people of all ages. For children, tweens, and teenagers, the challenges of living with ET can include difficulty performing school activities such as writing, typing, or drawing. Meal times at school may be stressful, and because they don’t understand ET, peers may make hurtful comments—intentionally or not.

If you are a young person, or the parent of a young person with ET, we’d love to hear from you here. Consider this a place to begin connecting with others like you. Ultimately, such connections should lead to greater understanding, a wider support network, and opportunities to share advice with other young people and their parents.

To get the ball rolling, we’ll share the insight of IETF Facebook page friend Kathryn Suzanne, who says her young child with ET has enjoyed using rock crayons because they’re easier to grip and control than traditional stick crayons.