Coping with the challenges of ET can be difficult for children

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

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

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

 

Assistive device query spurs terrific IETF Facebook thread

The IETF’s Facebook friends are quite active and talkative. Recently, we posed the question “What assistive device have you found to be the most helpful when dealing with your essential tremor?” In just a few hours, the post had accumulated more than 70 replies.

Responses went beyond what we might consider “assistive devices” in the tangible sense, mentioning medications, alternative medicine, diet, and other areas of interest for the ET community. Many of the postings underscore or expand on ideas presented in the coping tips section of the IETF website.

We’re just delighted to see so much dialogue in the ET community, with so many positive thoughts shared. So what insights and additions might you contribute to this conversation?

IETF Board Member Shares Expertise

IETF Medical Advisory Board Member, Theresa Zesiewicz, MD from Tampa, FL will be part of a panel sharing her expertise in the treatment of movement disorders at the International Association of Parkinsonism and Related Disorders (IAPRD) in Marrakech, Morocco May 24-25, 2013.

Abderrahmane Chahidi, DCFP, MRrici, Local Coordinator of the Congress and General Secretary of the MSAE  announced the First “Teaching Course in Movement Disorders” supported by the IAPRD.

The teaching program will consist of a panel of renowned international and national faculty in the treatment of movement disorders. International faculty includes Pr. Erik Ch Wolters (Amsterdam/ Netherlands), Pr. Daniel Truong (Fountain Valley, CA / USA), Pr. Theresa A. Zesiewicz (Tampa, FL / USA), Pr. Alberto Albanese (Milano/ Italy), and Pr. Tarek Yousry (London / UK ).

The program is designed to benefit young trainees in Neurology who aspire to specialize in Movement Disorders and update the practicing Neurologists, also neurosurgeons, radiologists and neuroscientists interested in movement disorders.

Where has my button been? Join in the fun!

ZoomButtonwithTitleThumbWe’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 awareness about ET.

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. Several of my ET friends in Houston and I posted the first picture on Facebook to commemorate my button’s inaugural visit to Houston for the ET Education Seminar.

You may order your button through our webstore at http://www.essentialtremor.org/SiteResources/Modules/webstore/scripts/default.asp or by calling our toll-free number 888.387.3667. Order a few extra to share with friends, and expand the circle of button-wearers! 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?

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 indicators 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.

 

 

Join Me!

Please join me as I facilitate the upcoming ET Education Seminars on April 20 in Omaha, NE and April 27 in Irvine, CA. More seminars are being scheduled each month so check our website www.essentialtremor.org frequently to see if the IETF will be in your area.

This is a free patient seminar where you will receive some great educational materials and hear some fabulous presentations. To register, go to http://www.essentialtremor.org/Seminars or call our office toll free at 888-387-3667 today!

 

Movement Disorders Neurologists Named to Best Doctors List

Congratulations to Drs. Maureen Leehey and Olga Klepitskaya who have been named two of the Best Doctors in America for 2013. This is the first time that Dr. Klepitskaya has earned the honor and the third time for Dr. Leehey. To learn more about the Best Doctors list go to www.bestdoctors.com and to obtain information about making an appointment, go to http://www.essentialtremor.org/siteresources/apps/physicians/