The IETF visits Ohio

Cleveland MarriottJoin me, Dr. Walter and Dr. Miller on Saturday morning, April 5, 2014 from 9:30 to 11:30 a.m. at the Cleveland Airport Marriott to learn more about essential tremor. We’ll discuss the diagnosis process for ET, what treatments are currently available, and what is going on in ET research. Plus, we’ll have a special presentation on occupational therapy and assistive devices.

This is one ET presentation you are not going to want to miss. And it’s free to everyone who wants to learn more, so bring your friends and family along. Just visit www.essentialtremor.org/seminars for registration information and driving directions. I look forward to meeting you!

Meet Me in St Louis!

Come spend some time with me and Dr. Pratap Chand Saturday morning, August 17, 2013 from 9:30 – 11:30 am at the St Louis Airport Marriott learning more about essential tremor. Go to www.essentialtremor.org/seminars to register. I look forward to meeting you and together learning about the medications, surgical options and research that is being done in ET.

Come and wear your button and take a picture with me so we can show people where our buttons have been and also to increase awareness around the St Louis area!

Milwaukee ET Event

We had a great time in Milwaukee with 80 people attending the extremely educational ET seminar. The presentations were very well done and provided a lot of information. Dr. Pahapill talked about his 20 year experience in the treatment of ET with deep brain stimulation and Dr. Blindauer reviewed the many medications that are often used and why some may not be successful in the treatment of ET.

For more information about the Froedtert and Medical College of Wisconsin Neurosciences Center go to: http://www.froedtert.com/SpecialtyAreas/ParkinsonsMovementDisorders/

 

 

 

 

Milwaukee Wisconsin here we come!

Hello Milwaukee and surrounding areas!

We will be facilitating another free ET education event/seminar on August 10 in Milwaukee. Come join us as we get together with the ET community to learn more about the diagnosis process and treatments available from Drs. Karen Blindauer and Peter Pahapill of the Medical College of Wisconsin. Follow this link www.essentialtremor.org/seminars  to register online or call toll-free at 888-387-3667. We look forward to seeing you there!

Mindfulness & ET

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.

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

“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!

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?

Kitchen Assistance

A few days ago, I received a call from an ET patient who has been having problems cutting herself when using sharp knives in the kitchen. At the time, I was at a loss for helpful suggestions. Since then, I did a bit of searching on our very own website! Under Assistive Devices, there is a link to Elder Store, http://www.elderstore.com/adaptive-eating-utensils. They have several serrated rocker knives listed which should provide some help in preparing meals. If you have any other helpful kitchen hints, please let us know.

A Day of Giving

Giving Tuesday

?Deeds of giving are the very foundations of the world.? -Jewish saying derived from the Mishna, Pirkei Avot 1:2

In the U.S. we have our traditions. We celebrate Thanksgiving on the fourth Thursday each year by spending time to feast with friends and family and give thanks for all of our blessings. On Friday, after we recover from our carb-coma, it is estimated that 247 million thankful Americans hit their favorite stores and shopping malls, spending around $59.1 billion (that’s right ? with a ?b?). Then Cyber Monday hits and as people head back to their offices, they load up on online deals to the sum of another $730 million.

This year there was a new day holiday marketers wanted to see join the season’s frenzy–a new national movement to dedicate one day strictly to giving back. GivingTuesday? is a campaign to add a new date to the national calendar; a date selected to show support for those non-profit organizations who strive each and every day of the year to fulfill their mission and make the world a better place.

This year was the first ever GivingTuesday?, and the IETF was happy to take part. With just an email and a few posts on Facebook, our generous friends donated $2,200 to the IETF mission! Not only that, those who were unable to give financially were encouraged to give back to their community by distributing essential tremor information to hospitals, clinics, doctor’s offices, schools, civic and senior centers, etc. to help raise awareness.

We thought if we raised $50 we would consider it a successful day. But after our first post, donations of every size and from all over the world began coming in. We quickly raised our goal to $500, then $1,000. But we never dreamed we would raise $2,000 in one day. We have an amazing group of supporters who came forward to give back. We are both impressed and humbled by their generosity.

Thank you to everyone who made this very first GivingTuesday? a great success! If you missed it, you can still donate. Here’s a link: www.essentialtremor.org/givingtuesday. Show your support for your foundation. Make us raise the bar even higher! Any day can be a giving day. Can we hit $3,000? I guess we’ll find out ?