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?

Touch Screen Interaction and Essential Tremor

Recently, Rebecca posted on the topic of Accessibility and the Smart Phone and how “touch and swipe” technology on smart phones affects how people with essential tremor (ET) use such devices.

Today, I saw an article about a new developing technology by Qeexo called FingerSense and TapSense that may or may not make smart phones easier depending on the degree of ET severity. Researcher Chris Harrison invented software that expands interaction on smart phones from simple touch to also recognize different kinds of taps. FingerSense technology allows screens to know how the finger is being used for input: fingertip, knuckle or nail.

FingerSense Overview | Qeexo.com from Qeexo on Vimeo.

This refined level of touch on screens may present a challenge for people with ET, if this technology is incorporated into devices.

According to an article in Fast Company, Harrison’s team is in talks with Android handset manufacturers to integrate FingerSense into their phones. FingerSense requires an extra bit of hardware in order to work–an acoustic sensor that can recognize the unique vibration patterns that distinguish among fingertip, fingernail, and knuckle taps. Which means you can’t just download FingerSense from Google Play and magically give your Galaxy Nexus a next-generation user interface–yet.

“We are looking to partner with device makers to integrate this sensor, which our software needs,” Harrison explains.

FingerSense’s two-handed touch screen input gestures seem much more useful for tablets,where two-handed interaction seems likely and practical especially for people with ET.

 

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.

 

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?