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.

 

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!

 

The Mighty Mug That Stands Strong

mugThere’s nothing worse than sitting in traffic when you’re late for work … until you spill hot coffee in your lap. But now there’s no reason to cry over spilled milk—or coffee. The Mighty Mug helps those struggling with hand tremor (or those who are just generally accident-prone) as the self-proclaimed “un-spillable” coffee cup.

The Mighty Mug is a travel or coffee cup that creates a powerful airlock when placed on a flat surface. A small amount of air is trapped beneath, creating a vacuum that locks the mug in place, preventing the possibility of accidental bumps and spills. When the mug is lifted, the pressure instantly stabilizes, allowing the airlock to release and lift easily. Perfect for those frustrated with shaky hand spills.

The Might Mug keeps your drink hot or cold, is dishwasher-safe, BPA-free and comes with a 100% guarantee policy. See how it works at TheMightyMug.com. Prices begin at $14.99 and are only available online or at Bed, Bath & Beyond. Let us know if the Mighty Mug helps with your ET.

 

 

A Growing Family of Attachments for Lift Labs

AttachmentsFamilyThe LiftWare stabilizer comes standard with a spoon attachment, but now can do more. Don’t let hand tremor get in the way of eating salads, pasta, and foods you commonly eat with a fork and avoid the hassle of spilling soup with two new attachments for the LiftWare device. The new fork attachment has a deep-scooped profile to hold more food, and the new soup spoon attachment has been designed specifically with a deeper bowl to hold 65% more liquid than the standard spoon attachment. The device and new attachments allow you to focus less on how you are eating and more on the people you’re eating with. The new attachments are compatible with the LiftWare stabilizer handle (sold separately for $295). Attachments available exclusively at LiftLabsDesign.com for $19.95.

If you are unable to afford a LiftWare device and have essential tremor, Lift Labs has a donation program available. If you would like to be considered to receive a donated LiftWare device, please review and complete an application. Please note that the IETF does not pay for devices nor does it solicit donations to pay for devices. We simply assist them in distributing devices that have been donated. 

Coping Tip: Poppin Pen May Prove Useful

Poppin PenIETF member Tracy Joslin often found her shaky hands to be an obstacle when taking meeting notes, writing checks at stores or filling out forms at doctor appointments — until she discovered the Poppin Pen. These heavy-weighted, metal, ball-point pens provide her the stability she needs to accomplish everyday writing tasks. “My penmanship used to be perfect, and it is nice to gain some control back,” says Tracy.

At a retail price of $14, Tracy highly recommends the pen for ET patients who struggle with hand tremors when writing. “The pen is also helpful to hang onto during a client meeting when I try to keep my hand from shaking when not writing, just so they cannot see,” says Tracy. Pens can be purchased at http://www.poppin.com/Writing/Metal.

Do you have a coping tip to share? Let us know on our Facebook page. Learn more about other ways to cope with the challenges of ET in everyday tasks at: http://essentialtremor.org/coping/.

Researchers prove resistance training benefits dexterity in ET patients

hand_weights_on_workout_matA recent IETF-funded study shows resistance training to be a possible therapy for individuals with ET. A team of researchers from Griffith University and Bond University in Australia identified that a generalized resistance training program for the upper limb is capable of improving manual dexterity in individuals with ET, and to a lesser degree, reduce abduction force tremor.

“Given that resistance training (RT) can reduce tremor amplitude and improve upper limb fine motor control in older adults, it is surprising that few studies have explored RT as a therapy for older adults with ET,” said Dr. Justin Keogh, Faculty of Health Sciences and Medicine of Bond University.

The lack of existing research inspired Keogh and his research team to compare healthy, older adults living with ET to those without ET through function tests. The function tests were used to assess activities common to everyday life. After a six-week resistance training program involving dumbbell bicep curls, wrist flexion and wrist extension exercises, functions test results significantly improved.

Results show that a simple dumbbell-based resistance training program had many significant benefits for older adults, with and without essential tremor. This indicated that both groups of older adults can significantly improve many real-world measures of manual dexterity. The greatest benefits following resistance training were gained for the limb most affected due to the disorder. This study is great news for individuals with ET to further explore the use resistance training as a viable therapy for improving upper
limb-function and ultimately, improving their quality of life.

To learn more about other IETF-funded research, please visit: http://essentialtremor.org/research/ietf-funded-research/.

The Power of Pets

pets

 

Because the symptoms of essential tremor worsen during times of stress/anxiety, it is important to find healthy methods of combating anxiety. One way to alleviate anxiety is to become a pet owner.

Studies have found:

-People with pets have lower blood pressure in stressful situations than those without pets.

-Playing with a pet can elevate levels of serotonin and dopamine, which calm and relax.

-Pet owners over age 65 make 30% fewer visits to their doctors than those without pets.

Also, pets add structure and routine to your day. Regardless of how depressed or anxious you feel, your pet will require daily feedings, exercise and affection. Pets offer the opportunity to put your anxiety aside and focus on providing a loving, comfortable home for your four-legged friend.

Shelters throughout the country are always full of wonderful cats and dogs in need of a forever home. If a pet would fit into your lifestyle, do yourself and a lucky animal a favor-Adopt a pet!

Read stories of IETF members who are proud pet owners here.

Meet Me in St Louis!

Come spend some time with me and Dr. Pratap Chand Saturday morning, August 17, 2013 from 9:30 – 11:30 am at the St Louis Airport Marriott learning more about essential tremor. Go to www.essentialtremor.org/seminars to register. I look forward to meeting you and together learning about the medications, surgical options and research that is being done in ET.

Come and wear your button and take a picture with me so we can show people where our buttons have been and also to increase awareness around the St Louis area!