Recently, during the annual meeting of the American Association of Neurological Surgeons, IETF Medical Advisory Board Member Dr. W. Jeffrey Elias presented the results of the first phase of the University of Virginia’s focused ultrasound study. Elias reported that after one year, study participants showed improvements in daily disabilities and quality of life. Publication of the actual study data is pending.
How does ET make you feel? A new video centers on the ways ET can make life challenging. Featuring six individuals who share personal stories about their life with ET, Essential Tremor is more than a tremor aims to broaden awareness and understanding about ET among healthcare providers and the general public.
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.
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.
When medical or surgical therapy has not controlled all of the symptoms of essential tremor, some people have found that focused breathing and meditation are effective practices for calming the mind and body. In the cover story of our most recent Tremor Talk magazine, Dr. Monique Giroux writes that employing such mindfulness strategies 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,” she says. “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.”
Is mindfulness part of your regimen to regulate ET’s impact on your life? What has your personal experience been? Please share: inquiring minds want to know!
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.
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?
We just registered the IETF on Great Nonprofits to get additional exposure for essential tremor and to raise awareness. Please help us get a 2013 @GreatNonprofits Top-Rated Award, write a review of your xperience with us! http://greatnonprofits.org/reviews/international-essential-tremor-foundation
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.
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 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.
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!