Where Has My Button Been?

Omaha 2 WHMBBHello Everyone!

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

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

Coping with the challenges of ET can be difficult for children

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

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

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

 

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?

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.

 

 

Leg Tremor

One of our readers Laura recently posted about essential tremor affecting her legs. ET can affect all limbs including legs as well as the more common shaking in the hands.

You can read more about leg tremor in an article “Leg Tremors versus Restless Legs Syndrome” by Dr. Joseph Jankovic, a member of the IETF’s Medical Advisory Board.

He writes:

ET chiefly involves the hands, but may also involve the head, voice and other body parts, including the legs. In our series of 350 ET patients, 13.7% had involvement of the legs.

To learn more, read the full article here.

Resources
For more facts about ET including information on head tremor, visit the IETF website.