TREMORTALK - IETF - Your Voice for Essential Tremor · As for me—my ET friends in Houston and I proudly displayed our buttons as you can ... Kelvin Chou, MD Arif Dalvi, MD Rodger

Apri l 2013Issue 11

TREMORTALKFor Members of the International Essential Tremor Foundation

Mindfulnessand essential tremor

George Holroyd makes ET his artistic partner

The need for more research

Dr. Monique Giroux explores

Assistive technologies for every day living

Each day, we can choose to be optimistic, choose to make a positive difference. We can find evidence of this all the time, in acts of kindess both grand and small. At this writing, I am reviewing another successful National ET Awareness Month, and I am encouraged, as you should be.

As you’ll soon read in this spring issue of Tremor Talk, March 2013 again affirmed the Power of One, thanks to individuals who chose to be optimistic, chose to make a positive difference. Whether it was asking a mayor or a governor to proclaim March as National ET Awareness Month, or raising funds—and opening hearts and minds—through a school project, our members had an upbeat and convincing impact.

So I am obliged to ask: If it worked so well in March, why stop now? Why, indeed? You, and constituents like you, have created clear momentum. Let’s challenge ourselves to keep this going. Let’s push ourselves to do more. Let’s not just talk about the Power of One during National ET Awareness Month, let’s be that Power of One and spread that awareness all year long.

A great place to continue this charge forward is through our Where has my button been? campaign.

Remember that Archimedes spiral button we talked about all month? Well, it has proven to be a huge hit, proof that the modest act of wearing a button—and discussing its meaning, if asked—can be a compelling gesture of activism and support. Even if you are shy, even if you don’t often speak out, you can participate in this campaign. The spirograph buttons are free, available through our website or by calling our toll-free number, 888.387.3667

So. I am challenging you to summon your inner power of courage and bravery and continue to help spread awareness about ET. I am asking you to wear your button, and to find five others who will also wear buttons. I am asking you and your friends, your family members, to wear these buttons and tell the world about ET.

It’s going to be a success, and it’s going to be fun. To track the connections you and your buttons make, we have started a Where has my button been? campaign on the IETF Facebook page. Join in the fun and post pictures of where you wear your button. Share your adventures and how you increased awareness. Tell us your stories about who asked you about your button and how that made you feel.

We hope to hear from each of you. As for me—my ET friends in Houston and I proudly displayed our buttons as you can see below during the ET Education Seminar. After I left the seminar, I proudly wore my button through the halls of the Houston Hobby airport, the Dallas airport, and then home to Kansas City, where I only took it off to sleep! I wear my button each and every day. I am very proud to wear this button because it not only brings greater awareness to ET, but also gives me hope that I can make a big difference in the life of my daughter, and so many more lives.

Happy travels!

TREMOR TALK Apr i l 2013

l e t t e r

Sincerely,

Catherine RiceExecutive Director, IETF

“One person can make a difference and every person should try.” - John Fitzgerald Kennedy

essent ia l t remor.org 1

Departments2 My Story Holly Kozlowski and friends ride for ET

4 ET Technology A tremor app for your smartphone and more

6 News National ET Awareness Month

8 Research The need for research, GABA, focused ultrasound, Study review: ET and TAD

22 Honoraria and Memorials

24 Tribute Susan Yoffe

27 Support Groups29 Tribute Rose Bennett Hildreth

Features

14 Mindfulness and ET by Dr. Monique Giroux

16 Health Managing ET with occupational therapy

18 Support Spring 2013 IETF Scholarship Fund recipients

Confidentiality Statement: The IETF does not sell or share any member or non-member personal informa-tion, including physical addresses, email addresses and phone numbers.

Please send comments, questions, and story ideas to: IETF Tremor Talk Editor, PO Box 14005, Lenexa, Kansas 66285-4005 USA or call toll free 888-387-3667 or email [email protected]

This publication is not intended to provide medical advice or be a substitute for qualified medical care. Appropriate treatment for your condition should be obtained from your physician. The content of this publication offers information to those with essential tremor. The IETF does not endorse any product advertised in this publication unless otherwise stated.

Cover Photo: Dr. Monique Giroux is co-founder of the Movement and Neuroperformance Center of Colorado in Englewood, CO and medical director of movement disorders for Swedish Medical Center.

IETF Board of Directors

Kelly E. Lyons, PhD President

Peter LeWitt, MD Vice President

Shari Finsilver Past President

Edward M. Block, PhD Secretary

Russ Rosen, MSW Secretary Treasurer

Editorial Board

Rodger Elble, MD, PhD Joseph Jankovic, MD, PhD Kelly E. Lyons, PhD

Medical Advisory Board

Mark Hallett, MD, Chair Roy A. E. Bakay, MD Julian Benito-Leon, MD, PhD Kelvin Chou, MD Arif Dalvi, MD Rodger Elble, MD, PhD W. Jeffrey Elias, MD Leslie J. Findley, TD, MD, FRCP Cole Giller, MD Adrian Handforth, MD Dietrich Haubenberger, MD Peter Hedera, MD Arif Herekar, MD Joseph Jankovic, MD Michael M. Johns III, MD Amos D. Korczyn, MD, MSc Anthony E. Lang, MD, FRCP(C) Peter LeWitt, MD Elan D. Louis, MD, MSc Fatta Nahab, MD William Ondo, MD Jill L. Ostrem, MD Michael Pranzatelli, MD, FAAN Ali H. Rajput, MD, FRCP(C) Alexander Rajput, MD, FRCPC Arshia Sadreddin, MD Sara S. Salles, DO Ludy Shih, MD Holly Shill, MD Mark Stacy, MD Claudia M. Testa, MD, PhD Jay Van Gerpen, MD Theresa Zesiewicz, MD, FAAN

Staff

Catherine Rice, MNM Executive Director

Rebecca Dye Communications

Carol Rucker Membership Coordinator

Bill Woodard Publications Editor

Tremor Talk is published three times a year by the International Essential Tremor Foundation.

IETF © 2013. All rights reserved.

©2007 IETF

How photographer George Holroyd sees his world

20

Apri l 2013Issue 11

The throaty growl of their motorcycles may have been silenced on a cold and rainy day in New Franken, Wisc., but a pack of riders assembled by Palm Gardens Restaurant & Bar owner Holly Kozlowski refused to stay quiet in showing their support for ET awareness.

With the weather too inclement for two-wheeled transport, the 16 intrepid participants instead carpooled along the selected route.

“The weather this year did not cooperate with the date we picked, but we decided we still wanted to go on the ride,” says Kozlowski, who each year organizes a motorcycle ride to raise funds for a different nonprofit.

For the third annual ride, a rider suggested donating funds to the IETF since his daughter has essential tremor. “Everyone still donated the bike and rider fees,” she says. “We sold raffle tickets at each stop, including our starting and ending stop at Palm Gardens.”

Kozlowski wrote to the IETF last November to describe this event. She enclosed a $675 check representing funds raised from the ride.

“I hope this helps with a bit of research or wherever you see fit,” she wrote.

But the story doesn’t end there. Subsequently, Kozlowski and two more people sent the IETF more checks in response to the motorcycle-ride fundraiser, with total donations topping $1,000.

These acts of kindness remind the IETF again of the Power of One: One person’s suggestion to raise funds for essential tremor, backed by the efforts and giving spirit of a small group, can make a major impact.

Please remember that every donation, no matter how large or small, demonstrates generosity that cannot be calculated but is valued greatly. Thanks to Palm Gardens owner, employees, and friends for their generosity! May you ride often, happily, and safely.


my s t o r y

Wisconsin motorcycle enthusiasts raise fun and funds during ride for ET

Take it on the road!


We’re always looking for fresh ways to bring essential tremor into greater public consciousness. In this high-tech age, we have all sorts of digital solutions, but for our latest effort, we’ve gone decidedly old-school: a simple one-inch button that you pin on your lapel (or wherever you like!). The button features the same Archimedes spiral that is used by movement disorders neurologists to help diagnose essential tremor and that is also seen in the IETF logo.

Based on anecdotal evidence from those of us at the IETF headquarters who’ve worn them out and about, the handsome, bright-green spiral has proven to be a fine conversation starter. During March, for National Essential Tremor Awareness Month, we distributed more than 2,500 of these must-have accessories. They are free and we will be using them all year long to raise ET awareness.

Join in the fun on our Facebook page at https://www.facebook.com/InternationalEssentialTremorFoundation where people will be sporting their spiral buttons and engaging in Where has my button been? activities. IETF Executive Director Catherine Rice and several of her ET friends in Houston posted the first picture on Facebook to commemorate her button’s inaugural visit to Houston. You may order yours through our webstore at www.

essentialtremor.org or by calling our toll-free number (888.387.3667)—in fact, we encourage you to get a few extra to share with friends, and expand the circle of button-wearers!

If asked about the button, you can sound very worldly and educated:

Tell them that the spiral is named after the Greek mathematician Archimedes (287-212 BC);

Tell them that asking a patient to draw an Archimedes spiral is one of the ways physicians have for diagnosing essential tremor;

Tell them that for millions of people worldwide, the spiral represents hope for a better future;

Ask them to join you in supporting efforts to raise awareness and funds to find better treatments and a cure.

Let’s see how many different and exotic places these stylish buttons (with their owners!) travel. So please, tell us—and show us—where has your button been?

Where has my button been? Join in the fun!


t e chno l o g y

You may recall that in our January research newsletter, we featured an emerging tremor stabilization technology from Lift Labs Design. Now, the same company has developed an application for smart phones that records your tremor and allows you to monitor and measure it at home. “Lift Pulse” is an iPhone app available for download through iTunes; soon, the company will introduce an Android-compatible version.

And the best news? Downloading this tremor measurement and monitoring app is currently free!!

“It is our hope to spread goodwill and generosity in order to support those in need of help,” says Dr. Anupam Pathak, Lift Labs Design founder and CEO. “So far, people in our local support groups have loved it. I’m hoping it will be useful to the larger ET community as well, and I wanted to share.”

Monitor and measure tremor with your iPhone

Alternate clothing choices may ease daily challenges of dressingDepending on its severity, ET can present challenges when dressing, such as the inability to remain steady while stepping into clothing, and difficulty fastening buttons. One strategy is to avoid garments with button closures, selecting instead clothing with snaps, zippers, or Velcro® closures. Another solution is to select clothing that can be pulled on over the head, or stepped into easily.

For more than 33 years, Seattle’s Buck & Buck (www.buckandbuck.com) has provided clothing solutions for individuals facing a variety of physical issues. The company began as an adaptive clothing service for nursing facilities in the late 1970s and has grown to become a national leader in the design and manufacture of specialized clothing. Clothing

designed with snap closures, VELCRO® Brand closures and zippers help make getting dressed easier.

The Buck & Buck website offers this dressing tip to help the person suffering from balance problems dress more independently. “Have the individual gather all items to be worn and then have her/him place the clothing on the bed within easy reach. Next, have her/him sit on the bed while putting on each item. There will be minimal times needed for standing to pull on the pieces of clothing and decrease the chance of a fall.”


Medical history bracelets join the digital ageMany of us remember the original, standard medical history identification bracelets or necklaces: stainless steel, inscribed with allergies or medical conditions, and worn around the wrist, ankle, or neck. These old-school trinkets provided basic info that could help medical personnel understand an individual’s needs in an emergency.

Nowadays, though, a simple-to-use product brings medical history bracelets into the digital age, storing a much deeper well of information for both emergency and routine situations.

Created by GC Publishers, the CARE Medical History Bracelet houses a USB flash drive loaded with special software that allows users to easily enter their full medical history, and to update it as often as necessary. This comprehensive health record contains vital emergency care information such as blood type; allergies and potential complications; immunizations; test results; medication types, dosages, and schedule; insurance references; and emergency contacts. It even translates, displaying the information in English or Spanish. And the drive can be loaded and viewed from any computer, regardless of operating system.

The waterproof bracelet offers healthcare providers easy, immediate access to this information. Since filling out the clipboard in the doctor’s office can be challenging, especially for people with essential tremor, this kind of product is one more way of making life easier. A patient with ET (or a caregiver/family member) can create a personal health record using the CARE Medical History Bracelet. This record can then be printed out or viewed by healthcare providers, emergency personnel, or insurance providers.

Emergency medical technicians are trained to look for the medical alert symbol on the wrist or around the neck. The medical alert symbol is prominently displayed on the wristband of the CARE bracelet, and EMT’s and emergency room personnel can easily retrieve life-saving information simply by plugging the bracelet’s USB flash drive into any laptop or desktop computer.

Recent software upgrades have improved the product for people with disabilities, since the software is now compatible with screen reading software (i.e. Jaws and Window Eyes). As the user selects each control field, the software can speak out the name of the field or be read by Braille. Other recently upgraded features include:

• save a living will, medical power of attorney, organ donor release, scanned EKG’s, digitized x-rays, CAT scans, DNR (do not resuscitate) and many more documents;

• generate PDF documents from the bracelet date, which can be emailed to doctors and shared with family;

• import data from a hospital or physician’s office.

To learn more and order the CARE Medical History Bracelet, visit www.medicalhistorybracelet.com. Enter the code IETF to receive $2 off the purchase price. Also, a $5 donation will be made to the IETF to aid in essential tremor research and awareness initiatives.

To order by phone call toll-free at 866.798.4531 and mention the discount code. For any other devices ordered from CARE Medical History Bracelet website using the IETF code, a $3 donation will be made to IETF.

ET new s

To play on the basketball-themed appeal, the 2013 National Tremor Awareness Month was a slam-dunk success. We extend to everyone a celebratory high-five, and our deepest gratitude for assisting in advancing public education about ET and adding research funds to improve treatment and discover a cure.

As noted in the appeal, the month of March in college basketball means bracket-busters, buzzer-beaters and buckets of thrills. But for millions of Americans, March was a time to share their stories and seek greater understanding of their daily challenges.

The numbers bear out a championship-level success: all 250 awareness posters were distributed; more than 2,500 of the stylish new Archimedes spiral buttons were ordered (we still have more; just visit the IETF webstore, or call our toll-free number to get yours); and nearly 350 donations totaling more than $16,600 poured into the research-and-awareness-fund bucket.

Additionally, more than 1,000 people registered for Dr. Arif Dalvi’s two webcasts on March 15, which covered a range of topics including what ET is, the causes of tremor, how it is diagnosed, what role genetics play, and the differences

between essential tremor and Parkinson’s

disease (PD).

Dr. Dalvi, who is

Director of the

Movement Disorders

Program at the Neuroscience

Institute at Methodist Hospital in

Merrillville, Ind., and Clinical Associate Professor of Neurology at the University of

Chicago Pritzker School of Medicine, also addressed such issues as common ET medications; the new FDA-approved diagnostic tool DaTscan; surgical treatments, such as deep brain stimulation (DBS) surgery; current ET research; and new developments undergoing study, such as Focused Ultrasound (FUS) Surgery.

We are particularly pleased to recognize the hard work of so many IETF volunteers in spreading awareness in their communities:

Young Joy Schaaf, whom we featured last spring in Tremor Talk for her fund-raising efforts, organized the second-annual Read-a-thon for ET at North Side Middle School in Union City, Ind., and raised $80; the local high school raised $60.91 in a bake sale, and donated those proceeds in Joy’s honor. Joy also persuaded the mayor of Union City, to visit her at school on March 1 to sign a proclamation declaring March as Disability Awareness Month and Essential Tremor Awareness Month;

Lynda Dome, (pictured left) support group leader in Gilroy, Calif., secured NETA Month proclamations from the cities of Gilroy, San Jose, and Salinas, Calif.;

Norma Doherty, who with Arlene Rosen leads the IETF’s Cincinnati-Dayton support group, notched proclamations from the cities of Centerville and Miamisburg, Ohio;

Facebook friend Lena Newburn grabbed proclamations from the cities of Port St. Lucie, Fla., and Terre Haute, IN;

Third annual nETa MonTh scorEs hEighTEnEd awarEnEss and rEsEarch funds



Well, at least in our new, community-oriented blog we are.

That’s right, in the relentless quest to expand our reach to new audiences, the IETF has launched an ET-centric blog that promises to be a fun, informative, and interactive way to represent the voices of people with essential tremor.

It’s easy to participate: Just go to www.tremortalk.org, where we’ll post brief articles, quotes, videos, photos, and other weekly features, and guests will offer insights and ET information. Share your own perspectives on the topics at hand. Add your unique voice to the mix.

We hope you’ll join in the conversation!

Oh, and remember, you can also find the IETF on Twitter and Facebook:www.twitter.com/essentialtremorwww.facebook.com/InternationalEssentialTremorFoundation

East Bay, Calif., area support group leaders and community ambassadors Sharon Alexander (pictured left) and Joe Bremhorst (pictured right) rallied their group members to man awareness booths at numerous farmers markets through the community—they even created their own ET awareness t-shirts!

You can read many more stories on our website at www.essentialtremor.org/Awareness-Month-In-the-News.

To all these wonderful teammates, and to so many more, thank you, thank you, thank you. With your continued commitment and positive energy, the focus on essential tremor is sure to rise to greater heights.

We’re the talk of the internet...

re s e a r ch

The driving need for essential tremor research


By Dr. Ludy Shih

Essential tremor is a common but misunderstood disorder affecting the lives of millions of Americans. As a movement disorders neurologist, I see this firsthand in the patients that come to clinic looking for help in treating their tremor. Patients are affected in different ways and respond to treatments in varying degrees. Overall, tremor and tremor-related disability tend to get worse with time.

As a clinician investigator, I see two things driving the need for essential tremor research: A) the need for more effective and better tolerated medications for tremor, and B) the ways that the common clinical features of ET should lend us clues to the understanding of tremor.

To illuminate on point A: Tremor medications that are currently used are a byproduct of research and development on other neurological conditions like epilepsy. Because little is known about how tremor works in humans and how it might be manipulated successfully, pharmaceutical companies have little incentive to develop a robust product development program for tremor.

To expand on point B: Many ET cases are familial, giving us hope that genetic mutations can be identified that will reveal basic knowledge about how tremor works in humans,

similar to what the discovery of genes causing Parkinson’s disease has done for that field. If we are fortunate, genetic mutations may reveal a chemical target that can be manipulated with the right drug, or they may reveal a more complex mechanism rooted in nervous system development or even neurodegeneration although this latter point is quite controversial.

Our research at Beth Israel Deaconess Medical Center is focused on two areas.

One goal is to try to identify patients who have subtle structural brain changes that may be associated with a more rapid progression of tremor related disability. Also, we are trying to identify whether there is any association with genetic variations in a gene called LINGO1 that is not seriously defective in people with ET but may contain

slight variations that help contribute to the development of essential tremor in a patient.

The second goal is to work collaboratively with other centers through the North American Essential Tremor Consortium to try to build a robust, data-rich repository on a large group of patients in order to classify and identify biological markers of tremor that might help

enrich our genetic studies. Genetic techniques have advanced significantly over the years but there are many forms of tremor. Each may have their own mechanism and methods of treatment. Therefore, careful clinical characterization may still be necessary in order to make the proverbial “finding of a needle in a haystack” more productive.

Patients can help by volunteering to be a part of these types of studies and by raising awareness in their community about

Like any difficult endeavor,persistence, teamwork,

collaboration and organizationamong patients, their advocates,

physicians, and scientists are oftenthe key to success.

Remember, friends, the month of July heralds our annual Tulips for Tremor fundraiser. Please join us as we dig deep to fund ET research initiatives!

Together, we can make a positive difference. Together, we can fulfill our promise to advance understanding of ET, leading to better treatments and, ultimately, a cure.

A symbol of hope.A fundraiser for research.

President’s ClubThe IETF recognizes and thanks the members of The President’s Club for their valuable support and leadership. For more information about The President’s Club, call IETF Executive Director Catherine Rice at 888-387-3667.

Membership current through March 21, 2013.

Mr. & Mrs. Joseph AtkinsonMr. & Mrs. David Berryhill, Jr.Peter Biasella Paul Broyhill Neil J. Burmeister Mr. & Mrs. John Cakebread Lillian A. Courtheoux Patricia Dupree Carmen A. Eanni Mr. & Mrs. Bruce Evans Shari & Stan Finsilver Mr. & Mrs. Richard FrinierJuanita Froelich Margaret Gorman Glen Greeley Benjamin Hampton Frank J. Hanna, Jr.Mr. & Mrs. Robert L. Harms Mr. & Mrs. Martin Holford Iglewski Family Foundation Susan Kahn Martin Kern Jeanette S. Koppelman Mr. & Mrs. Charles Leachman Michele Leber Stephen Lescher Dr. Kelly Lyons John G. Mancino John Marth

Stephanie Mendel Mike Mullen Beverly Myers Rosemary Nothwanger Robert M. Oster Mr. & Mrs. Randal Peterson Mr. & Mrs. Roland Pohlman Vivien Augusta Rock Mr. & Mrs. Joseph G. RobinsonFlorence A. Slater John W. Smith, Jr.Judy F. Smith Mr. & Mrs. Lee Smith Frank Soroka Mr. & Mrs. Alan Spoon Mr. & Mrs. Walter Stearns Mr. & Mrs. Gerald Swanson The Alvin and Fern Davis Foundation James A. Thomas Nancy Uppal John S. Watterson III Mr. & Mrs. Leo Wilz Fred M. Young, Jr.

We note with sorrow the passing of Gertrude Hankin. She will be greatly missed.

the need for essential tremor research. Like any difficult endeavor, persistence, teamwork, collaboration and organization among patients, their advocates, physicians, and scientists are often the key to success. This way we can be as prepared as possible for that next critical scientific and clinical breakthrough.

Continued support for the IETF—from people like you—is crucial to sustaining our research efforts.

Ludy Shih, MD, (pictured left, page 8) is an Assistant Professor of Neurology at Harvard Medical School and co-directs the Deep Brain Stimulation program at the Parkinson’s Disease and Movement Disorders, Department of Neurology, Beth Israel Deaconess Medical Center, Boston, Mass. She is a member of the IETF’s Medical Advisory Board.



re s e a r ch

Three decades ago, several groups showed that in persons with ET, the cerebellum uses more glucose and oxygen, indicating that it is more active. Ever since then, people have pondered whether tremor results from an imbalance between inhibition and excitation of brain cells. Because some of the medications used to treat tremor are also anti-seizure drugs, such as primidone (Mysoline®), and epilepsy is believed by many to result from lack of sufficient inhibition, researchers have wondered whether tremor might result from lack of inhibition, at least in part of the cerebellum.

When one brain cell inhibits another, it most commonly releases gamma-aminobutyric acid (GABA). There are many types of GABA receptors. They are divided into type A and type B. GABA A receptors are actually combinations of five proteins: two alpha, two beta, and either a gamma or a delta subunit. There are six different kinds of alpha subunits, three kinds of beta subunits, and three kinds of gamma, but only one kind of delta subunit. When one considers that these can combine in different ways, and each combination may respond differently to drugs, the understanding of their actions and pharmacology can understandably be complicated.

A basic division of GABA type A receptors, however, is between those that use a gamma subunit and those that use a delta subunit. Gamma GABA receptors respond to benzodiazepines and have a short response to GABA. Delta GABA receptors are fewer, and do not respond to benzodiazepines, but are more sensitive to GABA with a longer lasting response.

With that for background, let’s fast forward from the 1980s to the present.

In recent work, I found that the GABA-receptor activating drug THIP suppresses tremor in the harmaline mouse model of ET. THIP, also known as gaboxadol, has a high preference for activating delta GABA receptors, without affecting gamma GABA receptors in routine doses. I also found that a low dose of THIP markedly suppresses tremor in mice. Mice with the delta subunit knocked out also fail to show tremor suppression after being given THIP.

This work suggests that selective activation of delta GABA receptors can suppress tremor. THIP is not likely to be useful for treating ET because it does not distinguish between the subtypes of delta GABA receptors that use different alpha and beta subunits, and in high doses it causes sleepiness.

Through the use of drugs and strains of mice with specific GABA receptor subunits knocked out, I now aim to narrow down exactly which combination of delta, alpha, and beta subunits forms the receptor capable of suppressing tremor when activated. I believe that the identification of this receptor could lead to the development of drugs that specifically suppress tremor, yet might be well tolerated.

Charles Adrian Handforth, MD, of the Neurology Service, VA West Los Angeles Health Center, in Los Angeles, Calif., is a member of the IETF’s Medical Advisory Board.

GABA receptor may present target for new ET drug therapy By Dr. Charles A. Handforth


The FDA in mid-February granted approval for InSightec Ltd to begin pivotal Phase III testing for treatment of essential tremor using ExAblate® Neuro—a focused ultrasound therapy that uses high-intensity ultrasound waves to destroy target tissue in the brain. If proven safe and effective, ExAblate® Neuro could become a non-invasive, outpatient treatment possibility for ET patients for whom currently available medications do not work and surgery is not an option.

The Phase III study will be a multi-center, double-blinded, randomized control trial, with one-year follow-up. Patients who enroll in the trial will be randomized to either receive ExAblate® treatment or no treatment. The first patients are expected to be enrolled

in mid-2013. The trial is based on the safety and initial effectiveness results from 15 patients treated in an FDA feasibility trial sponsored by the Focused Ultrasound Foundation. ExAblate® Neuro uses MR-guided Focused Ultrasound (MRgFUS) therapy to provide an incision-free treatment, through the intact skull, with no ionizing radiation. The patient is situated in an MRI, which provides continuous visualization, plan, guidance, monitoring, and control of the treatment. Using the MRI data, technicians aim high-intensity ultrasound waves to eliminate target tissue in the brain.

“We are very excited about the beginning of this pivotal trial for the ExAblate® Neuro,” says InSightec

CEO Jim Davis. “It offers the hope of improved quality of life for people suffering with essential tremor. Results from the early studies showed that patients experienced immediate and durable symptom improvement.”

InSightec Ltd. is privately held by Elbit Imaging, General Electric, and MediTech Advisors. Founded in 1999, InSightec developed ExAblate® to transform MRgFUS into a clinically viable technology. ExAblate® has won several awards for innovation and its potential to help mankind including The Wall Street Journal Technology Innovation Awards and the European Union’s IST grand prize. TIME magazine recently named Focused Ultrasound as “one of 50 best inventions.”

FDA approves Phase III trial of focused ultrasound therapy for ET

Research made possible by an IETF grant has won acclaim from Québec Science magazine. Congratulations to

Professor Frédéric Calon (pictured left)and his team at the CHUQ Research Center, Laval University, Québec, Canada, whose breakthrough research on essential tremor earned them a spot in the magazine’s list of Top 10 discoveries for 2012.

Dr. Calon’s team appears on the prestigious list because of its success in locating the brain region involved in essential tremor. This discovery was published in the journal Brain.

“This is one of the first demonstrations of biochemical changes in the cerebellum in patients with ET,” Dr. Calon says. “It’s a real step forward

that opens the doors to new avenues of research, and perhaps to new treatments down the road. It’s possible that stimulating GABA receptors could help patients control, or even reduce, essential tremor. This is one of the first times such large sample groups have been used to study ET.”

Members of Dr. Calon’s INAF research team are Sarah Paris-Robidas, Élodie Brochu, Marion Sintes, Vincent Émond, Mélanie Bousquet, Milène Vandal, Mireille Pilote , and Cyntia Tremblay—all affiliated with the Université Laval Faculty of Pharmacy—as well as Ali Rajput and Alex Rajput from the University of Saskatchewan.

IETF-funded research honored by Canadian magazine


re s e a r ch

OverviewResearchers may be making important headway in identifying tests that more accurately distinguish essential tremor (ET) from tremor associated with dystonia (TAD). An article published in the January 2013 issue of the journal Neurology (Vol. 80, No. 1) suggests that ET and TAD might be two separate conditions. While the authors caution that the tests employed in the group study may be difficult to use in clinical practice, they believe that their findings should support further research into the relationships and differences between ET and TAD.

BackgroundThe diagnosis of ET is often challenging for physicians and researchers. Dystonia can produce movements similar to essential tremor, for example, such as back and forth head and neck movements seen in someone with cervical dystonia. Dystonia (for example, in the neck) plus tremor in other body areas unaffected by dystonia (for example, in the hands) has also been reported. The study’s authors call this kind of tremor in a non-dystonic area “tremor associated with dystonia” (TAD).

Whether TAD and ET are related or separate entities is a major question in research and clinical care. Complicating the matter, TAD and classic ET may occur within the same family. Thus, the idea of combining information—like genetic data—across ET and TAD is a matter of active debate in the research community. If these conditions are in fact genetically related, then combining data within and across families is important to do.

How to diagnose and therefore treat tremors that occur with dystonia is also under current debate. This impacts both current clinical treatment and the development of new treatments: If ET and TAD are different and respond to different treatments, but both types of subjects join the same clinical trial, then researchers may be unable to detect a treatment effect. Therefore, an objective test that distinguishes between ET and TAD would help improve both clinical diagnosis and research.

Study outlineDr. Michele Tinazzi and her colleagues at the University of Verona (Italy) investigated whether measurements of sensory and motor processing were different or similar in research participants with ET or TAD. The study employed two methods of measurement: temporal discrimination threshold and temporal discrimination movement threshold. Study participants included patients with ET, patients with TAD, and healthy control subjects.

As two tactile stimuli, such as painless electrical pulses, occur closer and closer together in time, people typically transition from feeling them as two separate stimuli to feeling them as one. The temporal discrimination threshold (TDT) is the smallest time between the stimuli at which they are still felt as two instead of one. In dystonia, this time tends to be longer than usual.

In contrast, temporal discrimination movement threshold (TDMT) is normal in dystonia. Electrical stimulation can be used to cause movement in individual muscles, such as flexing a finger or flexing

the wrist. The TDMT is the shortest time interval between such movements at which the person can tell there are two separate movements.

For this study, TDT and TDMT were measured in 20 ET subjects, 19 TAD subjects, and 25 control subjects. The TAD subjects had cervical dystonia, laryngeal dystonia or, in one case, were at risk for an inherited dystonia plus had action tremor but no dystonia in the hands.

ResultsAs in other studies, on average TDT values were significantly higher in TAD subjects compared to control subjects. TDT values in the TAD subjects were also higher than those in ET subjects. ET and control subject TDT values were not different from each other. Seventeen out of 19 TAD subjects had TDT values outside the range of the control subject values, while only three of 20 ET subjects were outside the control group range.

Conversely, TDMT values in ET subjects were on average significantly higher compared to TAD subjects and controls (10 out of 20 ET subjects outside of control group range, versus five out of 19 TAD subjects outside of control group range). The best distinction between ET and TAD was obtained by combining both TDT and TDMT results into a single value.

Conclusion and commentTDT and TDMT may be useful tests to generally distinguish ET from TAD. This represents an important finding: it is further evidence that ET and TAD might be separate conditions. It also reinforces

Review: Study indicates progress toward better diagnostic tests Offers evidence that ET and TAD may be separate conditions


The idea that every patient is unique is engrained into the heads of physicians-in-training. At some point, however, reality sets in and doctors begin to understand how little they really know about the body. Patients may then start to be seen as a group of people with a particular ailment.

People with essential tremor (ET) are very familiar with this dilemma and the resulting “one-size fits all” practice of medicine.

“Why does my right hand shake more than my left?”

“Why do I have voice tremors, while my mom has hand tremors?

“Why does medication X work for my friend, but not for me?”

These questions and many more encompass the frustrations and limited understanding that patients and physicians have of this entity called ET.

There is hope. Funded initially by the IETF and then subsequently by the National Institutes of Health, a study currently under way at the University of Miami is focused on starting to answer some of these questions.

In particular, investigators will be using various advanced MRI techniques to compare both the structure and function of ET brains to those without ET. This will help provide answers that may help explain why people have different tremor types or severities, why people have different responses to particular medications, and what role genetics has on the brain.

The study needs participants with ET and healthy volunteers. Study participation requires two or three study visits in Miami, Fla., where individuals will complete a screening visit and two research MRIs. If you are interested and would like additional information, please call 305.243.5827.

Fatta B. Nahab, MD, is Assistant Professor of Neurology & Neuroscience in the Department of Neurology at the University of Miami and is the Director of the Functional Imaging of Neurodegenerative Disorders (FIND) Laboratory at the University of Miami Miller School of Medicine. He is a member of the IETF’s Medical Advisory Board.

Imaging the ET brain By Dr. Fatta B. Nahab

proposed brain pathways affected in these conditions: TDT is thought to reflect sensory integration pathway abnormalities in dystonia, while TDMT relies on cerebellar pathways that may be affected in ET. Tests such as TDT and TDMT are currently best for comparing groups of ET and TAD subjects, or for giving a percentage answer for an individual subject, but not for providing a strict diagnosis.

Even combining the two test results did not perfectly distinguish between ET and dystonia subjects. Why is this? These tests have some pragmatic challenges. TDT relies on the subjects reporting what they feel, which can be affected by conditions other than ET or dystonia. For example, peripheral neuropathy can cause numbness, or cognitive impairment can cause inattention. These kinds of issues

can reduce the test result accuracy. Also, ET and dystonia are both clinical diagnoses. The diagnostic criteria for ET in particular may be including several related disorders under one label. TAD may more clearly separate out from a particular type of ET—for example, action tremor in hands with no other tremors. Thus our assumptions about ET definitions may contribute to the TDT and TDMT result overlaps between ET, TAD, and controls in this study.

Overall, this study reflects the evolving thinking in tremor research: tremor may occur in dystonia; TAD may or may not be related to ET; research groups are starting to test for the relationships and differences between ET and TAD. Accuracy and usefulness of the combined test results may increase with information from other tests, or with

more refined subject selection. Improved understanding about the differences and similarities of ET and TAD will help better match patients with treatments, and help advance research in both ET and dystonia.

Reviewed by Claudia Testa, MD, PhD, Associate Professor, Virginia Commonwealth University, Richmond, VA, and Dietrich Haubenberger, MD, Department of Neurology, Medical University of Vienna, Vienna, Austria.

Source: Tinazzi M et al, “Temporal discrimination in patients with dystonia and tremor and patients with essential tremor” Neurology (Vol. 80, No. 1), Jan. 1, 2013.


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What is the next step when medical or surgical therapy does not control all of the symptoms of essential tremor? You may be surprised to hear that you have the answer to this common question within you. Understanding how your thoughts, ideas and experiences affect your tremor is the next step toward coping better with ET.

ET symptoms come and go, often without warning, and the mind is on constant alert to monitor for these changes. This internal alarm system brings us to heightened awareness with enhanced focus on tremor as our mind constantly monitors for a negative change. If not reset, this internal alarm system sets up an ever stronger daily reminder that you have a problem and things are just “not right.”

As a result, the experience of tremor becomes coupled to negative feelings and sets the stage for distress, worry, anxieties and fear - about how you feel now and how your tremor may change in the future. These feelings and your tremor symptom become a daily focus as the mind becomes preoccupied with negativity and fear. Left unchecked, negative thoughts can impact the rest of the day and/or interactions with other people.

Preoccupation with the negative impact of symptoms can disrupt the ability to live in the moment. The mind translates sensations from the body and can affect these very sensations. Similarly, the mind can translate the power of healing over the body.

What these observations tell us is that the power to heal can come from many places. Medication and surgery can treat symptoms and restore many of the body’s functions that can be lost from disease. However, modern science and medicine may not be enough and does not treat the experience of the

person in the moment of tremor. The power to heal, to be and feel whole, to know that you are OK, comes from you.

Mind PowerOur mind can be our strongest asset or biggest obstacle when it comes to feeling better. Taking steps to change our habits for healthier living toward a focus on healing requires a commitment from the mind. Your mind will influence how you feel with tremor.

Think about a time when stress was a major part of your life. Did your tremor get worse? Or perhaps tremor started during that time of stress? Stress can amplify tremor symptoms. Over time, repeated or runaway stress can change how we think and react and can negatively impact our health. This effect can also work in the opposite way. You might think of your favorite place, relaxing on vacation or other time when stress was at a minimum. How did your tremor respond? Was it less intense? Less bothersome?

Chronic stress negatively affects our body and mind. Conversely, low stress and enjoyable experiences positively affects our body and mind. Fortunately, we can modify how our mind and brain react to stress and reduce the impact on disease. A well-known and measurable example of this is the placebo effect. Innovative research shows that expectations we bring to a treatment will in part determine the strength of the placebo effect.

Hope, belief, and positive expectations that a treatment will work will increase the chances it will do so.

MindfulnessMindfulness therapy can reduce the negative impact of stress and sharpen the mind’s potential for personal healing. It is a way to stay in the present moment, engaging in life and living life as fully as you can. Mindfulness is often defined as being present, in the moment, with intention in a non-judgmental way. Being mindful allows the mind to see things for what they are and then to let the thoughts go, instead of letting our thoughts control our body, mind and brain function. So how can this help you?

Mindfulness& Essential Tremor

By Monique Giroux


Being present in the moment helps one become aware of the many thoughts, ideas, distractions and assumptions that drive our behavior and impact our wellbeing on a daily basis. Our mind can become distracted by making assumptions, jumping to conclusions, and forming judgments that can have a negative impact on our thoughts. Becoming aware of these roaming or ruminating thoughts is the first step to living in the moment. Observing your thoughts without judgment helps you become more aware of your body, sensations, emotions and surroundings.

This technique is particularly powerful for people living with tremor. For example, when tremor increases you now have one of two choices—to react or respond. These choices at first glance may seem very similar but they are indeed very different in mindset and outcome.

React By reacting to tremor you are giving control to the spontaneous thoughts and feelings that affect your behavior and how you feel. Your spontaneous thoughts are unique to you but often include judgments such as

“Tremor is running my life.”

“My disease is worse.”

“I must fix this or stop this now.”

“If only I didn’t have tremor everything would be fine.”

“What if someone sees my tremor.”

These reactions can lead to a “snowball effect”and further worsen stress leading to yet worsening tremor.

Respond By responding to tremor you are no longer reacting but instead observing and choosing how to respond. How you respond is up to you.

‘This problem will pass.”

“I will sit for a few minutes to let this pass.”

“I have experienced tremor before…”

“My tremor is in my hands but is not me.”

By choosing your response you gain a sense of control and change the relationship you have to your disease or symptom.

This does not mean that you have given into your symptoms or enjoy the fact that you have tremor (or any other medical condition or problem in your life) but it does reduce the downward spiral that can happen when life gives you problems or obstacles. Tremor is a good example of this downward spiral or “snowball effect.”

Practicing Mindfulness Mindfulness can be an informal spontaneous practice or a formal and structured approach. A spontaneous and informal practice is present many times, perhaps endless number of times throughout the day. These daily experiences and moments are used as an opportunity to take notice and be present. The next time you awaken to a sunrise, hear the laughter of a child or are stuck in traffic you can practice mindfulness. Simply bringing awareness to the moment, identifying any feelings the experience brings on and how this influences us.

Road rage is a good example of how our behavior can be driven by emotions and thoughts without our full awareness. This reaction will cause us stress, increase aggressive driving and affect our mood, behavior and perhaps tremor for the entire day.

Mindfulness is also practiced as a formal exercise with meditation. One way to practice mindfulness meditation is to sit quietly and calmly but with attention and awareness. Bringing your attention to your breathing is one way to focus your attention. During this time you will simply observe your thoughts, feelings sensations and perceptions and let them pass without judging them, labeling them or controlling them. Meditation is a practice and as such the benefits will improve with time and practice. Over time, you will learn to apply these skills to everyday events.

When something happens that requires your attention you now have the insight to respond and not simply react. Described in another way, tremor no longer drives your reactions as you can intentionally decide how to respond to it. This element of control and intention can liberate you from the hold of tremor on your emotions.

Mindfulness is not without risk that can come from paying attention to and increasing your awareness of thoughts and behavior. Individuals with psychotic disorders, significant depression or post- traumatic stress disorder should meditate continued on page 17

Occupational therapists help people with mental, physical, or social disabilities to independently and more confidently carry out everyday tasks or occupations. Their aim is to understand each person’s requirements and lifestyle so that they can create the best treatment plan for them. They may suggest changes to the person’s environment, whether that be at home, work, or school, and may introduce the use of equipment designed to help with some activities. An occupational therapist (OT) who specializes in treating people who have neurological conditions can help a person with essential tremor not only learn how to do tasks differently, but to look at the world, and the way it works, in more positive ways, says Karen Mainzer, an OT in Bridgeton, Mo., a St. Louis suburb.

As Mainzer explains, OTs work with patients to consider the “whole picture, including the person, the task, and the environment in order to suggest necessary changes to maintain or achieve independence.”

“Society has a system of ways in which things are to be done, and we try to fit into that system,” she says. “Problems arise when we cannot do a task in the way the system says it is to be done. As an occupational therapist, I help a person to see that the system can be changed.”

Mainzer helps people analyze difficult tasks to determine what components of

the tasks are problematic or prohibitive. Additionally, she teaches individuals to look at those components to see how they can be changed, or how the environment in which they operate can be changed.

“The person is not inadequate for a task,” she says. “The task is inadequate for the person.”

From the perspective of working with a person with ET, for example, she might analyze the task of clipping nails.

“It’s not that the person with ET is not strong enough or smart enough to clip their nails,” Mainzer says. “It’s that the

clippers are not steady enough to do the task. A person with ET cannot change the fact that their hand is too unsteady to work the clippers, but they can change how they do the task, how they use the clippers.”

Mainzer suggests five basic principles that people with ET can keep in mind when determining how a task can be completed differently than in the normal way:

• stabilizing the object involved in the task through the use of non-slick surfaces, mounting tools, suction cups, clipboard and pumps;

•Reducing fine-motor demands through the use of weighted utensils, levers, hooks and pulls, and Velcro;

• conserving energy by taking rest breaks, sitting instead of standing, and sliding objects instead of picking them up to move them;

• reducing the potential for not being successful by using covered mugs and glasses, eating finger foods, and using plate guards;

• using advances of technology such as electric mixers and can openers, electric toothbrushes, and adaptive keyboards for the computer.

Mainzer says negative attitudes become the greatest obstacles in learning new ways to do things. These include saying things like: “I am too old to change the way I do things,” or “I will look older than I am if I use certain devices” or “I am not smart enough to change.”

If you believe occupational therapy could teach you fresh approaches to tasks that are too difficult or impossible because of your tremor, please ask your primary-care physician or neurologist to write a prescription for an occupational-therapy evaluation. Then discuss your service options with a representative of your insurance company. Be sure to request an OT who has experience working with people with neurological conditions.

Karen Mainzer O.T.L, C.H.T., practices OT in Bridgeton, Mo., a suburb of St. Louis. A previous version of this article appears in the IETF’s Anniversary Edition of Essays: 1988-2008, available for purchase by calling the foundation or by visiting the IETF Webstore via www.essentialtremor.org

Managing ET with occupational therapy

hea l t h


Attitudes become the greatest obstacles in learning new ways

to do things.


under the care of a mental health professional. Mindfulness can be a helpful tool to enhance the effect of medicine and surgery on tremor control.

The next time your tremor feels “out of control,” take a moment to reflect, and know that you have control in how you respond.

Dr. Monique Giroux is co-founder of the Movement and Neuroperformance Center of Colorado in Englewood, CO and medical director of movement disorders for Swedish Medical Center. She is board certified in Neurology. She has specialized training in Botulinum toxin (Botox) for dystonia, pain and spasticity as well as deep brain stimulation for essential tremor, dystonia and Parkinson’s disease.

Dr. Giroux is actively advancing quality care and wellness for the community in her positions as medical director of the Northwest Parkinson’s Foundation wellness center at www.nwpf.org/wellness, medical faculty for the National Parkinson’s Foundation Allied Team Training Program and project leader for the National Parkinson’s Foundation Care Center Consortium project.

Along with Sierra Farris, PAC she co-authored Every Victory Counts: Essential Information and Inspiration for a lifetime of wellness with Parkinson’s, produced in collaboration with the Davis Phinney Foundation.

Please visit www.centerformovement.org for more information about the center and these programs.

continued from page 15Mindfulness and essential tremor

Enjoyable experiences positively affect our body and mind.


s uppo r t

As part of our mission to support those affected by ET, the IETF assists selected students with ET by lessening the financial burden of attaining higher education. The IETF awarded $500 scholarships for the Spring 2013 academic year to five deserving students.

IETF Scholarship Program

IETF scholarship recipient Amy Timcoe of Woodhaven, MI, who is enrolled in the nursing program at Wayne State University, is a member of the university’s honors program.

Timcoe has suffered with essential tremor for as long as she can remember. “I distinctly remember the very first time someone noticed my shaky hands. It was in kin-dergarten and I was five-years-old,” she says. “I was standing in line waiting to go to lunch and a classmate pointed at me and asked why I was shaking.”

Her tremor worsened as she grew older, affecting her physical well-being and her aspiration. “I had always wanted to be either a doctor or a nurse,” says Timcoe.

“When I was in my junior and senior years of high school, I threw away that dream because I knew there was no way someone with shaky hands could be in the medical field.”

She decided to major in math-ematics with the career intent of obtaining a desk job so no one would see her hands shake.

“I was in the math program for my first year of college and hated it,” she says. “At this point, I knew that I had to follow my dream of being in the medical field and find out if there was any way I could stop my shaking.”

She was tested by a neurolo-gist that confirmed diagnosis of ET and prescribed medica-tion for treatment. “It was very bittersweet. I was happy that I found out what was wrong and would be able to take medication to control it; however, I was also upset that I did not do this sooner. I could have saved myself many years of embarrassment if I had seen a doctor when I was younger.”

By treating ET with medica-tion, she lives without embar-rassment and handles basic tasks like signing her name on the sign-in sheet at the doctor’s office. Timcoe says, “I can use my credit card to pay for things and sign the receipt instead of desperately trying to find an ATM so no one has to see my shaky hands try to make a signature.”

Timcoe was accepted into a nursing program. “I can fol-low my dream of becoming a nurse without the worry that my tremor will get in the way. I have even given injections with no problems!” she says. “Although I lived with the embarrassment of ET for so long, I am optimistic about what life will bring me in the future.”

Carolina Conway of San Diego, CA has been awarded an IETF scholarship grant for two years in a row. She at-tends San Diego State Univer-sity where she studies business administration.

She began showing symptoms of ET at the age of 15. At first, she was self-conscious. Her determination to not let ET hold her back grew steadfast.

“I realized that I didn’t want to just sit back on life and hide,” she says. “I wanted to enjoy every day to the fullest even if it meant facing some

challenges along the way.”Conway understands that the condition affects her physically and even emotion-ally but believes that ET has made her stronger. She no longer hides from her problems. She says, “No mat-ter what difficulties I may be faced with, there is always a way to make it work. Having essential tremor has taught me to never stop fighting!”

Emily Morris of George-town, SC will attend Sa-vannah College of Art and Design. She has struggled with daily activities familiar to others with essential tremor such as eating soup with a spoon.

“After four years and three tries with three different medications, I have finally found the right prescription that ceases my ET to the point where I can live with it,” Morris says. “However, the tremors still make up a big part of my life and can

make even the simplest of actions very difficult.”

Previously, she was banned from using any glass at school (mainly during chem-istry). From serving over-hand in volleyball to dealing with plastic wrap to writing, these tasks were both embar-rassing and frustrating.

Because of tremor in her hands, she switched from her childhood dream of becom-ing a veterinarian to follow-ing her passion for photogra-phy which she will study in college.

“ET has always made tak-ing pictures a great struggle but it is always the biggest struggles that make what you are doing worth it,” says Morris. “I enjoy making art and showing people how I see things. Sometimes my hands get in the way and other times I will use the shaking of my hands to the greatest advantage and bring it into my art.”

Katherine Hickey of Black-burg, VA attends Virginia Polytechnic Institute and State University (Virginia Tech). When Hickey is asked

whether she drank too much coffee, she responds with a well-rehearsed answer. She says, “My hands always shake. I was just born that way.”

As a teen, ET affected her ability to play the flute in music class and pour liquids into test tubes in chemistry. “There was rarely a time when my tremors went un-noticed,” she says.

Parent-teacher conferences always seemed to contain the sentence, “Well, she definite-ly does not use her tremors as an excuse to get out of doing work; she does try.”

She writes about ET with a poet’s instinct. “At times I wish ET had the visibil-ity and clarity of a tumor. I could point to a [computed tomography] CAT scan and declare, ‘There it is. ET is that little gray spot in the corner.’” Hickey says. “Like a ghost, it lurks. And like a ghost, you can’t shake it off. No garlic or burning sage to keep this spirit at bay.”

With medication, she can moderate her ET symptoms. “That tiny little pill sedated the ghost and threw him out the front door. Unsurpris-ingly, it sometimes awakens and comes scratching at the door again,” Hickey says. “It doesn’t hover; however, I imagine ET will be a part of my life. Thankfully, instead of stealing the dance floor, it sits quickly in a corner.”While ET is certainly not

the companion a 22-year-old hopes to have, it has been a source of resilience and perseverance for Katherine Hickey.

Kaleigh Knapp of Concord, NC attends the University of North Carolina-Chapel Hill. Essential tremor runs in Knapp’s family. Her mother also has ET and it may af-fect her sibling later in life. Knapp’s mother taught her to deal with ET as a chal-lenge.

“As a child her dream was to be a concert pianist,” says Knapp, referring to her mother’s aspiration. “When she was diagnosed, the physician told her to give up piano because she would never be able to play. Today my mother is an elementary music teacher and piano in-

structor. While she doesn’t play publicly, I cannot imagine my home without the sounds of my mother’s fingers making music, defy-ing the control of ET.”

That defiance and deter-mination inform Knapp’s outlook. She adapts to ET, plans accordingly, and still accomplishes tasks. Knapp says, “We joke about the tremors and choose not to be a slave to them; rather we own them.”

“No one is exempt from challenges in life. I cannot deny tremors and banish them. They are ever pres-ent. I just try to minimize their control daily and am proactive in my endeavors,” she says.

While not a good candidate to become a surgeon, Knapp intends to study nursing and work as a nurse prac-titioner. She says, “To care for people’s physical needs would be a great choice for me in medicine.”

To learn more about the IETF Scholarship Program, download

an application at www.essentialtremor.org or call

the IETF at 888.387.3667. To donate to the Program, visit www.essentialtremor.org/Scholarship.


20

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At its simplest reduction, a photograph sorts the world into an effective rectangle, capturing slivers of light traveling for a distinct moment in time. So it is for George Holroyd. Training his camera on a subject and peering through the eyepiece, he frames his personal worldview with each click. The images may challenge the eye. Reality may blur. Or does it?

As it turns out, the resulting, often fuzzy points of view clearly represent Holroyd’s experience as someone who struggles with essential tremor.

His embrace of that outlook in his work places him in fine artistic company. Alfred Stieglitz said photography is a reality so subtle that it becomes more real than reality. Ansel Adams said there are no rules for good photographs, there are only good photographs. And Dorothea Lange once famously called the camera an instrument that teaches people how to see without a camera.

Holroyd hopes that his photographs may well instruct people how to better see from his reality, the everyday reality of ET that he shares with millions of others worldwide. In early 2013, a selection of his photographs was included in a group exhibition with nine other artists at the Fabbrica del Vapore in Milan, Italy. From Paris, France, where the U.S. native now

lives with his wife, Sarah, Holroyd shares his story—one with which many others can identify.

“I’ve had ET since adolescence, but it really only became an issue for me when I joined the military as a Navy Corpsman (field medic) at age 18,” he says. “I made it through training and eventually served honorably in the field for seven years with the Marines. When I was young, I found my tremor was something that I could keep in check without medication. That continued well into civilian life and I went on to a career in software development without much bother.

“When I approached age 40, things started getting interesting, in many ways. Almost in parallel with my tremor getting worse, I discovered photography and have pursued that vigorously ever since.”

When he began shooting photographs, he admits that he took great care to hide his tremor and camouflage it from

the viewer. But during a November 2012 workshop in Milan, Italy, the photojournalist Samuele Pellecchia encouraged Holroyd to utilize his tremor and to access the emotions associated with daily living. Holroyd says the notion was liberating and, also, a bit frightening. He now was committed to intentionally show the world his vulnerability, his deepest human condition.The stated purpose of the Carnem workshops was to investigate the human body through an exploration of photographic representation. During the workshop, Holroyd strayed from his usual formula of photographing Sarah and shot a series of self-portraits.

“We discussed my tremor in class while reviewing the self-portraits,” he says, “and that was when I began to consider developing a new body of work, in the form of a visual diary. In my photography, I work to create series’ of images which are highly personal in nature.

“I am actively using my tremor in my current series, to portray ET through my lens. In this effort, the shaking has become a collaborator in the work, rather than something to be minimized or eliminated. I’m hopeful that this collaboration will result in an aesthetically pleasing and recognizable style.”

A personalpoint of viewParis-based artist George Holroyd makes ET his artistic partner in photographic series


In his younger years, Holroyd says, denial worked as a strategy for dealing with ET.

“I simply didn’t consider it a factor in what I could or could not do,” he says. “Of course, that’s a little easier to do with a mild tremor. I daresay I wouldn’t have fared so well if my tremor was as it is now.

“I encountered many situations in the service when my tremor was exacerbated by other factors such as physical and psychological stress, hunger, sleep deprivation, and fear.

“Things really seemed to shift into high gear as I approached forty. A minor inconvenience became a hurdle as I found myself unable to perform tasks as easily as I once had. As things progress, I continue having difficulty writing legibly, for instance.”

Holroyd calls ET his “most faithful companion,” revealing a wry sense of humor, as well as a humble acknowledgement of what the condition means in his life.

“Lately, circumstances are conspiring to force me into making a shift from inward denial to outward acceptance of the fact that I have ET,” he says. “I’ve found that maintaining a

good sense of humor is helpful in shrugging off the little mishaps or in helping break the ice with new acquaintances unsure about why I appear nervous to their eyes.”

It helps beyond measure, he says, that he has Sarah—his wife, his muse, his best friend—whom he met through mutual friends when both were living in the midwestern United States.

“Sarah has a front-row seat in watching me deal with ET,” he says. “More and more, I find myself having to ask her for assistance and that is something that I find difficult but she is there for me, even if it is only to listen.”

So what does George Holroyd hope that viewers take away from his work?

“I have the same challenges any artist faces, I reckon: namely, to create something good,” he says. “This is a difficult question for me, as I have no preconceived notion of what people might think of my photographs.

“Every photograph is a moment’s glance at a condition that existed at a single point in time, nothing more.

“On an individual basis, to suppose that a person could feel something similar upon viewing a photograph that I felt when I pressed the shutter seems highly unlikely. However, as a collection of images, I hope an authentic, enduring document will arise.”

And I - Project Statement“We pass through the present blindfolded. We are permitted merely to sense and guess at what we are actually experiencing. Only later when the cloth is lifted, can we glance at the past and find out what we have experienced and what meaning it has.” - Milan Kundera

Several years ago, I was diagnosed with essential tremor, a progressive neurological disorder which can cause debilitating tremors and loss of coordination, when the symptoms that I have had since adolescence eventually worsened to the point that I began experiencing difficulty in performing simple everyday tasks.

The series, And I is a diary; a collection of glances which illustrate a reality distorted by frustration, embarrassment, and a growing sense of social isolation. It serves as a visualization of the impact that essential tremor has on me and my closest relationships as I continue to come to terms with the new realities that I am presented with.

All photographs used with permission of the artist, Copyright George Holroyd, 2012.


and MemorialsThank you to everyone that established memorials and contributed funds to honor loved ones on behalf of the IETF from January 16 to March 21, 2013. If your donation was processed after March 21, 2013, it will be listed in the next issue of Tremor Talk. (Honoraria or Memorials listed in UPPERCASE, donors listed in italics.)

Honoraria

PRISCILLA & JON ANDERSON Tim & Barbara Anderson

NANCY BERGEREN North Shore ET Support Group

PRESTON BOGGESS Bob & Rozanne Bayer

MICHAEL BOREN Evelyn Faichney

ANGELA BROWN Mr. & Mrs. Bill Brown

RYAN BROWN Lynette Brown

GAIL BUTTERS COHEN Lila & Nathan Butters

LILA BUTTERS Charlotte Cohen

LILA & NAT BUTTERS Charlotte Cohen

MONA BUTTERS Lila & Nathan Butters

RICHARD COURTHEOUX AND FAMILY Lillian Courtheoux

OBED CRAMER Doris Cramer

NORMA DOHERTY Mr. & Mrs. Edward Chuhna

SHARI FINSILVER Alan & Terri Spoon

SHARI AND STAN FINSILVER Julie Eisman & Jason Levy

LOUISE GAGNE Mark & Krista Jefferson

DR. DOUGLAS GALEN Dr. & Mrs. Merle Glick

JANE GILK Jill Holt

DR. THEODORE GOLDSTEIN Dr. & Mrs. Merle Glick

SCOTT HARRISON Shari & Stan Finsilver

HELEN HOY Kathryn Hoy

RON JEROME Carol Jerome

MR. & MRS. STEVEN KAYE Dr. & Mrs. Merle Glick

NATALIE KUSILEK David Austrum Friends of Natalie Kusilek Charles & Barbara Kahut Luke & Katie Jo Cooreman Donna Deiss

Franklin & Delores Dietzler Melvin & Loretta Germanson Jay & Denise Killian Kathryn Knott Fran Stark Erik Kees Roy Lenander Donna Mickelson Rodli Keith James Sandford Linda White

LARRY LEOCHNER Brian & Marsha Dick

DR. MARK LIEBERMAN Dr. & Mrs. Merle Glick

DEBI LYNDON Shari & Stan Finsilver

BRENDA MCCONNER Shari & Stan Finsilver

MARIA MUSKARDIN Maria Muskardin

BEVERLY MYERS Sidney & Honey Sherter Alan & Judy Tobin

MAXINE MYERS Christopher Myers

JACK PETERS Jane Standish

STEVE RAIN Joann McClure

JILL RIGGS Nancy Riggs

HENRY & ELIZABETH SCHLENSKER Quentin & Margaret Stahl

BRAD SMITH Leo & Beth Wilz

DR. JAY SOLNIT Dr. & Mrs. Merle Glick

LYNDA ST. JAMES Skip & Dreama Fumia

CAROL WAGNER Ruth Darling

LEE ABEL Roy & Betty Abel

CAROLYN A. ARMSTRONG Gerald Armstrong Mr. & Mrs. Roger Knixx Patsy Nyberg Donna Williams

ADRIANNE AMALIE ADICKES BABBITT Charles Damsel

C. ELLIS BARHAM Associated Purchasing Services, Corp. Paul & Gail Barham Allen & Schiela Cox John & Linda Lamble

HUGH WALLACE BAYLESS Charles Damsel

IRENE BEGGS John Ricker

ARLIE RUSSELL BOBO, JR Charles Damsel

GILBERT T. BROPHY Charles Damsel

FRANCES BROWN Susan & Kenneth Myers

HAZEL CAMPBELL Norma Towry

FRANCES CARLINE Cathy & Michael Quindt

ALBERTA CASHWELL Barbara Barnes Corinne Boehm Holly Boehm Tom Caffrey Commonwealth Woman’s Club Linda Davis Carl & Lois Downing Wendy Fewster Susan Fiore Catherine Fletcher Suzanne French Keesler Kay Hardy Jonathan Jones Elizabeth Markson Nancy Marsh Linda McConnell Ann Nye

MeMorials

HonorariuMs


J. Dudley & Mary Key Stainback Ricardo & Nita Valiente James Weinberg Ann Williford

ROSALYN CHIZECK Susan Chizeck

ROAN CONRAD Paul & Marcia Kirby

IRMA ELIZABERTH COX Sarah & Willie Gutierrez

THE DEISHER FAMILY Ron & Ann Deisher

CHARLES & HELEN DICOLA Rich & Dianne DiCola

DONALD ECKBER Sylvia Thal

MIKE EDGEWORTH Shari & Stan Finsilver

LATIMAR C. FARR, SR. Charles Damsel

CHARLOTTE GILLIS Harold & Irene Davis Delores Carper Feeney Doug & Linda Gillis Norman & Jackie Gillis Robert Heinle

EILEEN BERRIS GLASER Denise Kort

ROSE GOODMAN Lewis Goodman

EUNICE HAAS Chip & Mary Biesemeier

DON HAMLIN Lena Hamlin

EDGAR HANNUM Frederick & Rosalie Garman

WILLIAM HEATH Northeastern Michigan Support Group

CAROLYN P. HENDERSON Anonymous

ALICE HYNES Friends of Alice Hynes Mitch Goldblatt Mr. & Mrs. Rich Govi

Mr. & Mrs. Gary Hunt Daniel Livingston Rich & Michelle Messier Michael Grant & Dorian LeMieux Clio Micolakis Chip & Diane Pinto Karen Rohaly Jim & P.J. Sipes Martha Stiles Lisa Susswein The Szelagowskis David & Drissi Winans

IRVING J. IMBURG Mary Wenzel

ERWIN AND MOLLIE ISAACSON Sharon Ritt

DARRIN JENSON Carol & Ron Jerome

RICHARD L. JOHNSON Betty Johnson

NORBERT KLOSKOWSKI Florence & Joseph Corrigan

ROBERT H. KOSHEWITZ Edward & Roberta Guest Dennis & Natalie Hunt Past & Present Fifth Grade Teachers at Eagle View Renee Sferro Jack & Peggy Williams Allen & Rilla Wright Phyllis Koshewitz

J. R. LARIVEE Shari & Stan Finsilver

AARON LAZAROFF Harold Kort

DAVID LLOYD Jack & Tonie Jordan Eleda Lowe Betty Mosshart

R. LUCK Carol Luck

HELEN MCKINLEY Shari Barrett

HELEN D MCRAE Elizabeth Dudley

ANN MENTO David TobiasWALTER F. METZ

John Barnes Robert & Lois Barnes Theodora Dellaportas Joseph & Shirley Swithin

JACOB MOHR Patrick Blackwell Peter & Rosa Chow Eva Conboy Richard Lamp Barry & Teresa Luke Michael & Maria Mohr PIKA, Inc. Paul Rokitka & Sonja Fernsted Prudent Technologies, Inc Alexander & Sally Staneff Frank & Sue Theeman USACE Buffalo District Sunshine Club Employees Assoc Elizabeth Williams

REV. JOHN F. MORMAN Ruth Shelley

DANIEL MUSKARDIN Maria Muskardin

HERBERT MYERS Shari & Stan Finsilver Jeanette Koppelman

DAVID NOBLETT David & Connie Ashby

RUTH NUTTALL Mary Parker

LUCILE PATTEN Ken Aldrich Margaret Aldrich Michael & Ann Carey Dr. Rita Fauliso Janet Gurski Isles of Chestnut Creek Mary Ellen Jutras Claudette Novak Ruth Rock SPS New England, Inc. Kathleen Saint Diane Salter Jayne Welcome Allan R. Wood

VIRGINIA PECK Diane & Charles Ofner

MAX PETERSON Frans & Dorothy Jahger

JOHN A. PICANO, JR Charles DamselROBERT PILDNER SR

Carol & Ron Jerome

DONNA RICKER Margaret Pohlman John Ricker

DR. HYMAN JACOB ROBERTS Charles Damsel

SHIRLEY SIMON SCHENK Leslie & Judy Schenk

MILDRED SCHMIDT Amy Brandt Chet & Jane Janik Mildred Kelly Darlene Kozak Eileen Rudzinski Mary Schmidt Bob & Rose Burns Dean & Beth Decker

AGNES SCHWARTZ Harry Rouse

DON SISCO Jimmy & Sherry Harris

ROBERT SKINNER Howard & Connie Sattler

CHARLES (LEE) SNOKE Betty Shambaugh American Legion Auxiliary Mr. & Mrs. John Benedino Steve & Sue Bramlett Kara Campbell Robert & Lisa Clements Thomas & Barbara Hensley Brandon & Leeann Hissong Stephen & Mary Mann Timothy & Ann Marty Larry & Nancy McDermith Timothy & Leslie McElroy Larry & Sandra Morton Mueller Co. Harry & Carol Porter Robert & Martha Postlewait Stephen & Mary Postlewait Gregory & Andrea Ritchie Donald & Audine Severns Merle & Judy Sims Rosalie Smith Richard & Bonnie

Thomas Topflight Grain Co- operative Brandon & Jenny Walker Betty Wheatley

MARTHA SOROKA Frank Soroka

PATRICIA SPRITZ-EBRIGHT NECA Kim DeGeorge Thomas & Linda Mortallaro Robert & Roberta Spitz Spitz-Ebright Estate

ANETTE & RYAN SPOON’S GRANDFATHER Shari & Stan Finsilver

JEAN SPRANGER JoAnne Tremper

MARY SPRANGER JoAnne Tremper

LYDIA G. STARKENSTEIN Linda Smiley

GLORIA A. TANTON Terry & Glenda Kreimeier

DONALD TASKER Carol Tasker

PAULINE VAINSTEIN Ellen Shapiro

FRANK VITALE Rose Abbate

RICHARD G. WALTERS Peggyann Baumgardner Christopher & Louise Gioe Kim Leong Lynne Maus Gordon & Jerrilyn Miller John & Amy Roberts William & Darlene Walters Dolores Woods

HAZEL WEST Leo Wilz

MICHAEL ZERN Charles Damsel

Susan Yoffe, National Coordinator, New Zealand

t r i bu t e

The IETF community lost one of its staunchest advocates and dearest friends on Nov. 13, 2012, when longtime volunteer Susan Effie Yoffe died unexpectedly in New Zealand at the age of 70.

Susan, who served many years as an IETF support group leader in New Zealand, is remembered for her tireless and deeply personal commitment to improving the lives of those with ET.

She had experienced tremor since she was in her thirties, but a New York Times article about Kathryn Hepburn’s ET inspired her to contact Robyn Harris, who had recently formed a New Zealand support group.

Susan began as Auckland chapter coordinator and became national coordinator in 2009. Her exemplary work helped to advance understanding of ET among both the general public and the medical profession. She led expansion efforts, establishing several more support groups, and also organized venues and participants for two research programs.

In 2006 she aligned IETF efforts with those of the Neurological Foundation (NF), New Zealand’s primary non-government funder of brain research. She helped the NF launch a new public education initiative, Brain Awareness Week (BAW), which sought to promote the importance of neurological research. “For 2012’s BAW program, Susan had built up the IETF presence to a level where every event the Neurological

Foundation held throughout the country had representation,” said NF representative Sue Giddens.

“Susan’s dedication and commitment to raising awareness about essential tremor, and it should be said, for all neurological disorders, was steadfast. She valiantly flew the flag for patient care and better outcomes and continued this up until her passing. Susan’s death will leave a large gap in the national neurological community network.”

Susan was born April 17, 1942, in Auckland, shortly after her mother had arrived there to join her father, a British Naval Officer. As a child Susan spent time in England, Sri Lanka, and Scotland before returning to New Zealand. In 1965 in Geneva, Switzerland, she met her future husband, Michael, who worked for the United Nations. The couple had a daughter together, and lived in many countries including Malta, Austria, Botswana, Antigua, and Indonesia, where they adopted a son.

In 1981 Susan and her family returned to New Zealand, where she eventually returned to university and graduated in 1994 with a master of social anthropology degree while earning first-class honors. Her thesis led to the establishment of the Rangitoto Trust — a protection for a volcanic island in Auckland Harbor —and culminated in New Zealand’s first UNESCO Landmark Award. Until her death, she continued with historical research and was an adviser to an architecture group and several historic organizations.


We invite you to join the IETF, a nonprofit organization that represents people with essential tremor (ET). Members receive publications and resources from the IETF about ET studies, research, news, and stories about people with ET. Your tax-deductible donation helps fund much-needed research and education initiatives. Thank you for joining the IETF in our mission to help the estimated 10 million people in the U.S., like you, that have ET.

To support ET research Greatest Need

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Membership Levels - $30 Basic, $50 Bronze, $100 Silver, $250 Gold, $500 Platinum, and $1,000 President’s Club.

Members receive: Essential tremor medical alert card, Patient Handbook, Tremor Talk magazine (3x per year), monthly electronic newsletter TremorGram, medications flyer, and coping tips flyer.

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TT April 2013

Thank you for supporting the IETF.Hope. Awareness. Research. Support.

Serving those affected by essential tremor since 1988.

International Essential Tremor FoundationPO Box 14005 | Lenexa, Kansas 66285-4005 | USA | 888.387.3667 (toll free) | 913.341.3880 (local) EssentialTremor.org | Facebook.com/InternationalEssentialTremorFoundation | Twitter.com/essentialtremor

Your membership is a tax-deductible donation.

MEMBERSHIP = DONATION = SUPPORT FOR THE IETF MISSION

OUR MISSION - The IETF funds essential tremor research to find a treatment and cure for people with ET, increases awareness, and provides educational materials and tools for healthcare providers, the public, and those affected by ET.

The member information in this section is gathered for statistical data reporting to aid research. Please note: IETF does not share or sell member information to any third party.

Please check one: Male Female Do you have ET? Yes No D.O.B: At what age did you first notice signs of ET? At what age were you diagnosed with ET? I have not been diagnosed.

How many family members have ET?

Please check one: Asian Black/African American Hispanic/Latino White/Caucasian Pacific Islander Native American Other (Please explain)

MEMBER INFORMATIONSTEP 5

IETF | PO Box 14005 | Lenexa, KS | 66285-4005

MAIL MEMBERSHIP FORM TO:STEP 6


UNITED STATES

Elkmont, ALElise Hickman 256.230.2594 [email protected]

Harvest, ALCarla [email protected]

Little Rock, AREric Twombly 501.773.5528 [email protected]

Sun City West, AZPaul Leitch 623.975.9638 [email protected]

Sun Lakes, AZJane Limbaugh 480.883.1766 [email protected]

Tucson, AZRobert [email protected]

Belmont, CADeanne Bohne 650.591.9362 [email protected]

Gilroy, CALynda Dome 408.847.8649 [email protected]

Novato, CASatoko [email protected]

Roseville, CAPaula Lavin 916.771.4866 [email protected]

San Ramon/East Bay, CA Sharon Alexander 925.487.5706 [email protected]

San Diego, CACarolina [email protected]

Tiburon, CA Richard [email protected]

Van Nuys, CAJackie Eddens [email protected]

Lady Lake, FLKen Taylor 352.787.3866 [email protected]

Palm Harbor, FLLiane Hansen 727.647.6178 [email protected]

Port Orange, FLLloyd Dunham 386.761.6509 [email protected]

Savannah, GAPhil and Nancy Bowden 912.352.7921 [email protected]

Chicago, ILAlison Rezabek 708.352.4784 [email protected]

Decatur, ILDonald Klinker 217.423.9667 [email protected]

Granite City, ILPriscilla Johann [email protected]

Northbrook, ILGladys Keats 847.559.1779 [email protected]

Munster, INDonn Davidson 219.972.0972 [email protected]

Indianapolis, INJacqueline Hudson 317.823.3803 [email protected]

Merriam, KS Sandy Curtis 913.706.7802 [email protected]

Wichita, KSRita Sevart 316.796.0769 [email protected]

Louisville, KY Erika Ganong 502.291.3676 eagano01louisville.edu

Boston, MASherrie Lookner617.948.1975 [email protected]

East Falmouth, MARobert Reddy 508.457.9025 [email protected]

Springfield, MAKaren Villanueva 413.589.1127 [email protected]

Silver Spring, MDDan Miller 301.384.1139 [email protected]

SolomonsAmber [email protected]

Scarborough, METed Ellis 207.510.1402 [email protected]

Clarkston, MITom and Sabrina Pilarski 248.891.3881 [email protected]

Midland, MICarol Jerome 989.799.5413 [email protected]

Golden Valley, MNJoan Hlas Struther’s Parkinson’s Center952.993.6650 [email protected] Lee’s Summit, MO Anita Otis 816.373.4303 [email protected]

Lexington, MOSharon Oshita 702.524.0875 [email protected]

St. Louis, MOHarold Bruner 314.487.7407 [email protected]

An ET support group is an informal, self-managed, self-help group. It is not a therapy group or 12-step program. It is run by and for people that have ET or that have a family member or friend who has ET.

An ET support group is a place to be you. The group is a place where people feel welcome and accepted, can talk openly and can exchange ideas about the challenges of living with ET. It is a place where privacy and confidentiality are respected.

An ET support group is a source of information and practical suggestions about ET and about the IETF. It is not a substitute for medical treatment or for personal or health counseling.

An ET support group is a circle of friends where people with ET and their supporters can listen, laugh and empathize together.

An ET support group is as unique as its members. The interests and capabilities of support group members vary greatly and change over time. Rather than a standard approach, each group offers the specific support its members need at any given time.

Learn More About ET

Support Groups

Asheville, NCRita Lyda 828.298.4085 [email protected]

Carolina Beach, NCCarol Anderson 910.458.9127 [email protected]

Sylva, NCTed Kubit828.631.5543 [email protected]

Voorhees, NJJoan DiGiovanni609.922.3325 [email protected]

Albuquerque, NMKen Whiton 505.255.4419 [email protected]

Carson City, NVDena McCormick 775.230.6004 [email protected]

Adams, NYNina Hershey 315.232.2373 [email protected]

Commack, NYHarvey Glasser 631.499.0590 [email protected]

New York, NYJoan Miravite, NP NP Beth Israel Medical 212.844.6134 [email protected]

Margaret [email protected]

Oswego, NYKathleen Ruggio 315.342.3925 [email protected]

Syracuse, NYJessica Ryan315.382.8554 [email protected]

Dayton/Cincinnati, OHArlene Rosen 513.791.5546 [email protected]

Eugene, ORNick Richmond 541.689.3323 [email protected]

Bechtelsville, PAKirsten [email protected]

Hazleton, PAKarla Foose570.495.9714 [email protected]

New Holland, PA Judy [email protected]

Pittsburgh, PADarla Yesko 412.351.4564 [email protected]

Bristol, RIRick [email protected]

Dallas, TXRachelle DuBose Caruthers 214.345.4224 [email protected]

Katy, TXBetty Schwarz 281.347.2194 [email protected]

Tyler, TXElizabeth Guthrie East Texas Medical Center Neurological Institute 903.316.9700 [email protected]

Clearfield, UTTrudy Hutchinson [email protected]

Charlottesville, VAJohn Watterson 434.973.2510 [email protected]

Kilmarnock, VAMerrill Grasso 804.435.1039 [email protected]

Richmond, VADiana Campbell 804.556.2345 [email protected]

Roanoke, VAMike Hopkins 540.721.2087 [email protected]

Seattle, WAAllie Fee 206.784.6978 [email protected]

Middleton, WIKathy Muirhead 608.824.9130 [email protected]

Milwaukee, WIVicki Conte Parkinson’s and Movement Disorders Program [email protected]

INTERNATIONAL

Ghana, Africa Bernhard Darko 233.234.122.253 [email protected]

Bonn, GermanyAlbert Brancato Lotharstrasse 95 Selbsthilfegruppe Essentieller Tremor 011-49-228-327153 [email protected]

Auckland, New ZealandYvonne StandenNew Zealand ET Support Group, Inc. 0508-873-667 [email protected]

Essex, United KingdomLong-Term Conditions Center44-01708-386399 National Tremor Foundation [email protected]

Toronto, Ontario, CanadaCecilia Ronderos [email protected]

Windsor, Ontario, CanadaHeather [email protected]


For information on starting a support group in your area, contact,

Rebecca Dye at [email protected] or call

toll-free 1.888.387.3667.

29

Rose Bennett Hildreth

essent ia l t remor.org

t r i bu t e

Jill Bennett Osborne emailed the IETF in November 2012 to inform us that her mother Rose Bennett Hildreth passed away.

“She was such a vibrant and beautiful lady that her essential tremor was indeed a tough thing for her to live with,” says Jill.

Jill’s mother passed away due to a number of reasons at the age of 84. Jill notes that the one thing that bothered her mother the most was essential tremor. “She had lived with it for years but during her last month of living, it became more apparent,” says Jill. “She was good at hiding it by holding her hands together and not eating certain foods when people were around to see her.”

Hiding symptoms of ET is a common reaction. Although the condition should not be considered a source of embarrassment, it can often be the cause of frustration over the lack of control, proper treatment, or a cure.

Receiving proper treatment, or even simple understanding and acknowledgement, especially from healthcare providers is important no matter the ailment, illness, or disability. In the case of Rose, Jill found that her mother’s healthcare providers didn’t know enough about ET.

“I noticed when she was in the hospital and then at home for her last two weeks with 24-hour care, that many health care professionals, including doctors, would ask her ‘Do you always shake like this?’” says Jill. “And I would respond with, ‘Mom has

essential tremor.’” Unfortunately, the response would often be a look of “I’m sorry I don’t know what you’re talking about.”

This reaction is not an isolated occurrence. Far too many healthcare professionals do not have accurate, timely information about ET, a neurological condition that affects an estimated 10 million people in the U.S.

The IETF’s mission is to fund research to find the cause of essential tremor (ET) that leads to treatments and a cure, increase awareness, and provide educational materials, tools, and support for healthcare providers, the public, and those affected by ET. This mission is more than a statement; it is the IETF’s call to action to reach people with educational information so that people like Rose Bennett Hildreth can receive proper care and attention throughout life.

Jill, who kindly agreed to share her mother’s story, states, “Thank you for your continued research and education of this condition to people. I noticed when people called her attention to it, it just got worse. I think it would be wonderful for you to share her story and she would be honored by that. I hope that this will help others who live with this on a daily basis. And again, to help educate all of those in the health care field that seem to need the knowledge.”

Photograph courtesy of Jill Bennett Osborne.

International Essential Tremor FoundationP.O. Box 14005 Lenexa, KS 66285-4005 U.S.A.888.387.3667 toll-free 913.341.3880 local 913.341.1296 fax

Com

ing Ju

ly 2013

Documents

TREMORTALK - IETF - Your Voice for Essential Tremor · As for me—my ET friends in Houston and I proudly displayed our buttons as you can ... Kelvin Chou, MD Arif Dalvi, MD Rodger