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 ?

Accessibility and the Smart Phone

Touch ScreenIt seems like touchscreen technology is here to stay, which is a really problem for those with hand tremor. Many smartphone users prefer a tactile keyboard, but are finding that they are not a common feature in newer phones, as manufacturers are moving more to touch and swipe navigation. So what’s a person with ET to do? Don’t overlook the power of assistive technology!

First thing to do is adjust your touchscreen sensitivity. You can do this by going to your Menu, and then select Settings. Under Settings you will see an Accessibility option where you can enable your pre-installed options. You will also find keyboard options under Settings. Review your options and play around with it to find what works best for you. Not finding what you’re looking for? Go to your app store. There are free and low cost options for both iPhone and Android.

Many users suggest forgoing touchscreens and keyboards altogether, preferring instead to use voice to text software (Siri, Vlingo, IDEAL, etc.).  Voice to text allows you to just say what you want to type and the software will do the keying for you. Some apps will even read back what you’ve said to ensure everything is just as you want. Dial the phone, send a text or even search the web, all with the sound of your voice?you only have to be able to touch the microphone button.

Don’t let your tremor hold you back from experiencing all the wonders that new technology can bring to your fingertips. Utilize accessibility features on your smartphone, Kindle, tablet and PC. Make your technology work FOR YOU.

 

It’s Good ? And Good for You

Volunteers - A gift to the communityThere are many reasons people volunteer. 

  • Volunteering keeps people active, busy and engaged
  • Allows for learning new skills that may be attractive to employers
  • Opens up a world of new friendships with like-minded individuals
  • Offers people the ability to publicly support something in which they believe
  • Gives an opportunity to take on a new challenge
  • Not to mention the intangibles like pride, personal satisfaction and a sense of accomplishment

And now research shows that volunteers really are getting more out of their volunteer experiences than anyone ever thought possible! Volunteers are reported to have lower mortality rates than those who do not volunteer. They also report greater functional ability and overall life-satisfaction with lower rates of depression.  And for older Americans (55+), the more volunteering they do, the more likely they are to receive these positive health benefits. (Cooperation of National and Community Service, The Health Benefits of Volunteering: A Review of Recent Research)

If you have essential tremor, are passionate about helping others and yourself, consider becoming a volunteer Support Group Leader in your community. Review our Support Group Leader Position Description and Training Guide,  to see if volunteering with the IETF is right for you.  If after reading these documents you think that volunteering with the IETF would fit well into your lifestyle, all you have to do is complete an online application.

Start volunteering. It’s both good, and good for you!