Next meeting:   Our next regular meeting of the East Bay ET Support Group will be Saturday, July 19th, 10:00 a.m. to 12:00 noon at San Ramon Regional Medical Center; conference rooms Blackhawk A and B.

See the map to the left for directions.  Please email our facilitator, Sharon, at EastBayET@comcast.net, or call Sharon at 925-487-5706 to get more info and to reserve a seat!! 

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 ten 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!