Our Next Meeting is, as usual, the 3rd Saturday of the month, August 20th, 2016, from 10:00 AM to Noon.  Our guest speaker this month will be Samuel Hamner, PhD, from Cala Health.   He will be giving a presentation about the company and tell us about opportunities for you to get involved in studies.  Cala is a health tech company developing new ways to treat essential tremor that don't require surgery or drugs.  As Head of Product, Sam is passionate about patient-centered design in healthcare, and strives to create accessible solutions that have meaningful impact. Sam earned his PhD in biomechanics from Stanford University.

See the Google map on the left for directions to San Ramon Regional Medical Center. We meet in the Blackhawk Conference Rooms, A & B, signs will be posted. The rooms fill up fast so please RSVP via email to our facilitator, Sharon, at EastBayET@comcast.net to ensure a seat.

Recap of our June Meeting:
We were pleased to welcome Sarah L. Schneider, CCC-SLP, M.S., as our guest speaker in June.  Ms. Schneider is the Speech Language Pathology Director at the UCSF Voice and Swallowing Center in the Department of Otolaryngology - Head and Neck Surgery.   Schneider specializes in evaluating and treating all aspects of voice, with expertise in the professional speaking and singing voice.  She joined the department in 2007 and has since helped develop the voice and swallowing program. She earned a Certificate of Clinical Competence in Speech-Language Pathology from the American Speech-Language-Hearing Association, or ASHA, and is licensed in California.  Schneider is active in several research projects at the center and also works as a voice research consultant outside of UCSF. She sits on the editorial board for the Journal of Voice, contributes to voice texts and speaks regularly at the local, national and international level on vocal health and rehabilitation.

Recap of our April Meeting:
We were thrilled that Paula Chidester, from Cala Health, was our guest speaker! You may remember that we were introduced to Paula and her team by Dr. Kate Rosenbluth, Bioengineer from Stanford.  Many of our EBET members participated in the original study, also at Stanford, involving a non-invasive wearable device for ET. This device was similar to a TENS unit and supplied electrical stimulation to the nerves in the wrist. Great news, they now have a finished product!!!!

Paula and her team are beginning a new study at UCSF in San Francisco and the Parkinson's Institute in Sunnyvale, the purpose of which is to show that the device is both safe and effective. 

Recap of our March 2016 Meeting:
We hosted another exciting guest speaker at our March 19th meeting. Dr. Leslie Cahan, neurosurgeon from UCLA & Kaiser, Los Angeles, presented detailed information about Gamma-Knife Thalamotomy. As we have discussed Deep Brain Stimulation surgery and MRI-Guided Focused Ultrasound at our last meetings, we feel this information not only added to our comprehensive understanding of the non-invasive surgical treatments of ET, but was also a fitting way to celebrate National ET Awareness Month!

Recap of our February 2016 Meeting:
Our February 20th meeting was an interesting discussion about MRI-Guided Focused UltraSound (FUS) based on the very recent first-hand experience of one of our members. We were also enlightened about surgical treatment of ET by two other members who recently underwent DBS surgery.

Recap of our January 2016 Meeting:
We started out the New Year with a great guest speaker at our January 16th meeting. We were privileged to have as our guest Julie M. Muccini, MS, OTR/L, Neuro Clinical Specialist, Occupational Therapy, Rehabilitation Services, from Stanford Hospital and Clinics. Julie spoke on a broad range of coping mechanisms for Essential Tremor. We had a great turnout!

Jeff’s “Tremor-Friendly” Smartphone/Tablet Keyboard Recommendation

After a lot of experimenting, I’ve concluded that for me, with my tremor, the AI.Type (click for website) keyboard, available for iPhones, iPads, and Android smart phones and tablets, is the most “tremor-friendly,” customizable, aftermarket keyboard currently available.  It is free for the first 10 days to check out, after which it costs the princely sum of $3.99 if you want to keep all of its goodies. 

Hopefully, one of these days, Google, Apple, or somebody else will design an even more tremor-friendly, voice-driven input technology, but until that day, this will probably be the keyboard that I continue to use.

In case you’re interested, these are what I find to be the most tremor-significant AI.Type settings, listed by their respective Settings tabs, that I like best:

PREDICTION

Personal Shortcuts  - I love this feature. They start you off with a bunch of shortcuts that you may or may not find useful, but you can quickly customize it to make it your own. For example, if I type in my initials followed by a space, AI.Type automatically types in for me all four lines of my full name, address, city state zip, and phone number.  Wow, it just saved me a whole lot of typing!

Enable Swipe Input - For my tremor, I just can’t use swipe input so I keep this option unchecked, but if it works for you, it certainly is available.

Enable prediction and correction Check

Word Suggestions Settings...
            Show Word Suggestions – Check
            Auto-Correction  - Check
            Auto-Completion – Check
            Enable Cloud Base Prediction – Check

LOOK & FEEL

            Bottom Row Keys...
                        Show voice-to-text key – Check!!! I use this terrific voice-to-text feature all the time!  It is shockingly good.  It is SO MUCH FASTER and MORE CONVENIENT than manual typing!
                        Show comma and context-shortcuts key – Check
                        Show punctuation key – Check
                        Show edit-utilities key – Check, be sure to try this out for some very helpful tools!
I leave all of the other options here unchecked, but your choice.

            Show cursor tracker on keyboard - My tremor won’t allow me to use this feature so I leave it unchecked, but if you find it useful, Check it!

Display Top Row – Check! I find this top row very helpful. Be sure to cycle through its various options by pressing the “...” on the far right of the Top Row.

            Top Row Height – 100%

Well, those are my favorite features of my (currently) favorite iPhone/iPad/Android keyboard.  Play around with the many settings for this or whatever keyboard you like, and see what works best for you and your tremor.

Jeff Pector
This Saturday, April 18th, 2015, our East Bay Essential Tremor Support Group meeting will focus on our “in-house experts.” These are our members who have personally undergone a surgical treatment for Essential Tremor. One member will discuss her very recent experience with Deep Brain Stimulation surgery. Another will discuss his own experiences with MRI-Guided Focused Ultrasound. Joe and I will then follow-up with info on Gamma-Knife surgery.

During the beginning of our second hour, another long-term member will tutor us on one or more of the assistive technologies that helps him cope with Essential Tremor: First up, Dragon Naturally, a speech recognition software that helps one send texts & emails without actually having to type! As many of us have difficulty typing with Essential Tremor, this may prove to be very helpful.

We'll end the 2nd hour with personal share. This is a time when longtime members, as well as newcomers may briefly share their challenges with ET, their favorite doctors, helpful medications, etc.

In the months to come, we’ll continue to showcase our “experts” in regard to other treatments for Essential Tremor: Medications, holistic measures and finally, our favorite medical clinicians. Please continue to return to this blog site to learn what the following month’s topic will be.

See the Google map on the left, for directions to San Ramon Regional Medical Center. We meet from 10-noon but we fill up fast. Please rsvp so that I may make up a nametag and arrive in time to put it on and find a seat! J

We look forward to seeing you Saturday!


See the details about the meeting location below. 

EBET Activities

Yesterday, April 8th, 2015, the leaders of the East Bay ET (EBET) Support Group, Sharon and Joe, visited the Google Campus in Mountain View.   The purpose of our visit was in response to an invitation by Anupam Pathak, the inventor of the now infamous LiftWare Spoon.  (www.google.com/liftware)  Once again, we enjoyed the hospitality of Anupam and his engineering team, John and Michael.  After lunch in the Google cafeteria, we discussed new and innovative ideas that Anupam and Michael were exploring to help control Essential Tremor's impact on a person's ability to write legibly.   It was a very interesting conversation and exchange of ideas.   We hope our input added to the future of Google/LiftLabsDesign's effort to thwart the debilitating effects of Essential Tremor.

Sharon and Joe
IETF Ambassadors

East Bay Essential Tremor Support Group (2003 to present)
EastBayET@comcast.net

A Message From The Facilitator of East Bay ET

Hi! My name is Sharon and I am the facilitator of East Bay Essential Tremor Support Group.

First of all, I'd like to extend my heartfelt gratitude to Joe for sharing his ET and Deep Brain Stimulation story! (See "My Life With ET" below.)  Since you joined East Bay ET Joe, you have been an inspiration to all, and a huge help to me!

Thank you also for being our blogmaster! You gifted us with the means to share and discuss the trials, tribulations and even the joys of ET. Some of you may be thinking: Trials, yes! Tribulations, yes! But joys??! hmmm...

As it has been my honor to facilitate EBET for nearly twelve years, I can tell you that ET has brought me into the lives of many kind, supportive and funny people that I may not have met otherwise. It's such a wonderful feeling to discuss an ET issue or challenge with the group and feel so at home, so supported and so completely understood.

If you have not availed yourself to an ET support group, I encourage you to do so. And if you'd like to visit East Bay ET, I promise the group & I will make you feel right at home! Here's a bit about what you can expect:

After you contact me the first time (at EastBayET@comcast.net), we will exchange one or two conversations or emails so that I may answer any of your questions about our group. With your permission, I'll add your contact info into our ET member database, so I can remind you of the next meeting, any important ET research, or news pertaining to guest speakers. Last month we were privileged to learn about Lee Silverman's Voice Therapy, (LSVT), a form of speech therapy used to treat voice tremors associated with Parkinson's Disease and ET. In the months prior, we were visited by a Movement Disorder Specialist from UCSF. Although we enjoy our guest speakers, it's important to note that the main purpose of the support group is to support each other! And to realize that we who live with the challenges of ET are the real experts!! While you learn from our experiences, we will learn from yours!

We meet for two hours with a short break for snacks. The first hour begins with a few minutes of announcements prior to discussing new information or research about ET. The second hour is for personal sharing specific to Essential Tremor. IE: Which medicines work, which do not. Which doctors are empathic and knowledgeable and which are not!!! ETC, ETC! We have an extensive collection of information from the International ET Foundation (www.essentialtremor.org), as well as info about ET that we have learned along the way. We also have a one-of-a-kind lending library containing reading materials, DVD's and specialized items intended to make our lives with ET a little less challenging.

Please consider this your personal invitation to join us! If you've had a chance to read my thesis, you know my ET story. I'm looking forward to hearing yours!

My Life With Essential Tremor (ET)

My experience with ET started with my Mother.  She shook terribly in her later life, barely able to get food into her mouth.  Her doctor told her that she suffered from a malady called, in those days,  Familial Tremor.  But to my knowledge she was never treated for it.  I remember Mom being very self conscious of her tremor and worked hard to hide it.  She did all she could to avoid social settings and/or eating out.

My tremor became noticeable when I was in my very early twenties as I finished college and entered the U.S. Navy.   My wife noticed, while we were first dating, that I shook slightly.  But only later did she tell me that she "just thought she made me nervous."  That became the story of my younger years, especially as a Navy Pilot.  And naturally, with the jolt of adrenalin that surges through your body when flying high performance aircraft, my tremor frequently was exacerbated.  I found it very helpful for me, and my 'audience,' to explain to them about my tremor, even though I didn't know many of the medical details at the time, just how it affected me.  By talking about it, attempting to explain that I wasn't as nervous as I might appear, frequently joking that I was not 'out partying all night,' I was better able to defuse the embarrassment for myself and my associates.

Now let's fast forward to my later years.  As my tremor worsened with age, I found it more intrusive to my daily living.  I finally saw a neurologist in my mid-forties and was 'offically' diagnosed with Essential Tremor and put on Inderal.  Inderal, and the many other medications my doctors prescribed for me over the years, either had unacceptable side effects and/or did little to control the tremor.  As I turned 60 my tremor was preventing me from doing many of the things I love the most in life, like eating soup, taking pictures, etc.  It was then that I started seriously researching what ET was all about. 

During my research, I found the International Essential Tremor Foundation and joined as a member.  I soon received a postcard from the IETF announcing a study at the UCSF Hospital in San Francisco.  This study involved FDA approval of a new device that could control ET using Deep Brain Stimulation (DBS).  After much more research on medications and their efficacy, or lack thereof, I called and  asked for an appointment at the UCSF Movement Disorders Clinic.  After a most thorough interview and examination, the doctors at UCSF determined that I was a candidate for the surgery.

In the two years since my DBS surgery, I have experienced complete control of my tremor and the total restoration of my quality of life.  I can eat soup again!!  And I can do so without slopping  it all over my shirt.  I can drink from a glass without spilling.  I can read my own writing.  I can shave without cutting myself!

Hopefully, with the recent passage of the Congressional legislation that names March as ET Awareness Month, funding for research for new medications and devices, such as mine, will alleviate the symptoms of ET for the millions of other sufferers.

By the way:  here is a sample of my handwriting with my DBS device turned on, followed by a sample of my handwriting with my device turned off.

March is Essential Tremor Awareness Month!


In December 2010, Congress passed House Resolution 1264 officially designating March as "National Essential Tremor Awareness Month."   This Congressional Resolution provides us with a key platform to educate the public about the condition, as well as raise much needed research funds. While 10 million people in the United States have essential tremor, the public still has very little awareness of ET. Because the condition can be treated in many cases, it is important for people to seek help early if they exhibit symptoms. With your assistance, we can reach more people this year.  See this link from the IETF for facts about Essential Tremor:  ET Facts

About East Bay Essential Tremor (ET) Support Group

The East Bay ET Support Group is based in San Ramon, California. We meet on the 3rd Saturday of every month from 10:00 am to 12:00 noon at the San Ramon Regional Medical Center. For information about the meetings, directions to the meetings, or just curious about Essential Tremor and would like to join the group, please contact Sharon, our Group's Facilitator, at EastBayET@comcast.net . You are encouraged to read the thesis written by our Support Group Facilitator, Essential Tremor: The Other ETThis is an excellent and detailed treatise regarding essential tremor . . . from one of our own!