Hello to everyone in the essential tremor community!
I am new to the International Essential Tremor Foundation and wanted to introduce myself. I am the new marketing and communications manager. My role involves development of messages and stories to educate the public about essential tremor and the impact it has on more than 10 million people nationwide. I serve as editor of our magazine, Tremor Talk, and our Tremor Gram enewsletter. I oversee our social media sites, Facebook and Twitter, and manage our website, among other responsibilities.
I must confess I had never heard of ET before I applied for this position. How could that be? It impacts so many people and yet I was not aware. But I am catching up. Each day I read and hear stories from people of all ages who are living with ET. Just this week I was reviewing the applications from our scholarship recipients and was in awe of their positive outlooks, and also saddened by what they have had to endure. One student was diagnosed at age six, so he has had little experience of NOT having ET. One is a mother of three who said her biggest challenge has been answering her children when they ask, “Will I shake like that when I grow up?”
I am proud to work for an organization that is serving the ET community with awareness and education initiatives, and support, like scholarships. And last year we donated $75,000 toward research initiatives to further better treatment options for ET.
The learning will continue for me, and I am asking all of you for your support in this area. I would not be able to do my work without the ET community at large who share their stories of hope, frustration and, sometimes despair. No, some stories are not happy ones, but these are the ones that may resonate with others who are battling each day. I will do my best to share these stories and keep the lines of communication open. And, I look forward to the day when I can write that story about the breakthrough in research that will help everyone. I know it’s coming . . . keep the faith. . . and keep in touch with me.
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.
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?