Lift Pulse 2.0

Lift Labs AppLift Pulse 2.0, a smart phone app created by Lift Labs, has released the results of data gathered from users since updating the app in June 2013. Lift Pulse 2.0 includes a journal feature that measures and records tremors. It also records what medications you’re taking for tremor and how you’re doing with sleep, exercise and stress. The app stores your journal entries anonymously in Lift Lab’s private database. You have access to this data through your phone and computer, and Lift Lab analyzes it to provide you with information on how different factors affect your tremor.

Among the data extracted from users of Lift Pulse 2.0, Lift Labs found:

  • The most commonly used prescription is Propranolol (Inderal®), followed by Primidone (Mysoline®).
  • Exercise exacerbates amplitude of tremor.
  • People who reported less stress have less severe tremor symptoms.

Lift Pulse 2.0 users have measured their tremor almost 4,000 times so far, and that number continues to grow, according to Lift Labs.

Lift Labs, an IETF partner, focuses on healthcare and consumer devices used by individuals with motion disorders such as Essential Tremor. Lift Pulse 2.0 is available from iTunes and Google Play.

New study searches for more precise diagnostic tool

Brain ChangesIt is sometimes difficult, even for a trained neurologist, to tell the difference between Parkinson’s disease and essential tremor when it is in the early stages, as they can share similar symptoms (such as resting tremor). A new Taiwan-based study investigated changes in brain volume in people with essential tremor and Parkinson’s disease, searching for a pattern that might help differentiate between to the two conditions more easily.

The study found that although both ET and PD patients showed a decrease in brain volume in areas involved with movement and muscle control, it also showed increases in other distinct areas. Researchers speculate that this is due to the ability of the brain to compensate for damaged areas by developing and strengthening new pathways, thus increasing the size of those areas.

Although further study is needed, it appears that looking specifically at the areas of the brain that increase in volume, along with other diagnostic and assessment tools, may allow physicians to more accurately differentiate between ET and PD.

Read the abstract.

The IETF is Coming to Houston

IETF Seminar - San DiegoEach year the IETF’s Executive Director travels throughout the U.S. facilitating educational seminars about the diagnosis process and treatment options for essential tremor. The Foundation is happy to be able to bring movement disorder specialists and essential tremor patients together to learn more about ET.

On Saturday, March 23rd, the IETF will be in Houston, TX. Drs. Thenganatt and Fenoy are extremely knowledgeable and have lots of good information to share. At the end of the seminar, attendees will even be able to ask the physicians questions, during a Q&A session.

For more information on this or any of the IETF’s other events, please visit our calendar of events or our Free Seminars webpage. There is limited space, so register today!

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!

The Mysteries of the Mind

Mind Body MedicineI watched a program on The Science Channel the other night: Through the Wormhole: Mysteries of the Subconscious. Part of the program discussed the work being done at The Benson-Henry Institute of Mind Body Medicine at Massachusetts General Hospital. With more than 35 years of research and clinical practice, Herbert Benson, MD and his colleagues at the Institute have proven the effectiveness of mind/body medicine in helping thousands of men and women reduce the stress that can cause or exacerbate their medical conditions. And as any ET patient will tell you, stress and anxiety do exacerbate essential tremor.

Mind/body medicine takes into account that physical health is influenced by thoughts, feelings, and behaviors, and conversely, thoughts, feelings, and behaviors can be influenced by physical symptoms. It teaches individuals how to take control of their lives, use their own power to reduce stress and other negative behaviors and thoughts, and thus maintain or regain health.

Dr. Benson found that there is a counter-mechanism to stress which he calls the “relaxation response.” The relaxation response is a physical state of deep rest that changes ?normal? physical and emotional responses to stress (e.g., decreases in heart rate, blood pressure, rate of breathing, and muscle tension). If practiced regularly, it can have lasting effects.

For more information on how to elicit the relaxation response in you, visit The Benson-Henry Institute of Mind Body Medicine website for the basics.

Do you meditate? What technique works for you? What other strategies or Coping Tips do you use to manage stress and anxiety?