In line with our commitment to alternate locations throughout the state, our April essential tremor support group met in the town of Portland. 21 people from throughout Connecticut participated. Everyone had the opportunity to test the difference between using a standard soup spoon, a Chinese soup spoon, and the state-of-the art LiftWare spoon to bring pasta from bowl to mouth! Some of the results were remarkable.

Dr. Machado again graciously responded to medical questions throughout the meeting. Current research projects were discussed. We also talked about ways to spread ET awareness. Our group will participate in the NBC Connecticut Health & Wellness Festival at the CT Convention Center on Saturday and Sunday, September 27th and 28th. Planning a walk for next year’s ET Month (March 2015) was discussed as well.

The camaraderie and support among group members is truly heartwarming. If you missed our meeting last Saturday, please join us on June 7th in Orange!

Shari Finsilver (an International Essential Tremor Foundation Board Member and past president) was interviewed by Michelle Trudeau, Health Reporter from NPR. It is a great spot that aired this morning on Morning Edition. Click here to listen to the interview online.

Saturday, April 5, 2014 ~ 1:00 p.m. to 3:00 p.m.

Portland Library, 20 Freestone Avenue, Portland, CT 06480

Registration is requested – Inquiries are invited!
Friends and family are welcome.

To register or request information, email Helen Moser or submit the form below.
Click here for driving directions.

The CT essential tremor support group is sponsored by

DRIVING DIRECTIONS TO THE PORTLAND LIBRARY:

Click here for directions from Google maps.

The International Essential Tremor Foundation is conducting a very important medication and essential tremor survey. It takes just a moment to complete this short survey about your essential tremor diagnosis and treatment …and your response is critical to helping IETF obtain accurate information. Click here to participate.

In December 2010, the United States House of Representatives formally passed House Resolution (H.RES.) 1264 officially designating March as National Essential Tremor Awareness Month. This resolution was cosponsored by a bipartisan group of 56 Representatives. If you’d like to help raise essential tremor awareness in your community, click here for more information.

23 people from all over Connecticut attended our second essential tremor support group meeting!

After brief introductions, our discussion focused on coping with our ET. Everyone generously shared their experiences and the diverse tools and methods that work for them.

In addition to responding to questions as they arose, our group’s Medical Director, Dr. Duarte Machado, conducted an informative Q&A session. Dr. Machado also discussed some of the current clinical trials.

Because group members travelled from different areas of the state, we talked about future meeting locations. Our next meeting (April 5^th) will be held in Portland. In June, we’ll be back in New Haven County (Milford or Orange) to accommodate a highly credentialed speaker. Then, in August, we’re working on a location in either Groton or Essex.

Topics for future meetings were also discussed …as was March is Essential Tremor Month.

If you missed our February meeting, please join us in Portland on April 5^th!

Saturday, February 1, 2014 ~ 1:00 p.m. to 3:00 p.m.

COPING WITH ESSENTIAL TREMOR

Stratford Library, 2203 Main Street, Stratford, CT 06615
conveniently located off Exit 32 of I-95
and accessible from Routes 8 and 15

Registration is requested – Inquiries are invited!
Friends and family are welcome.

To register or request information, email Helen Moser or submit the form below.
Click here for driving directions.
Click here for parking information.

The CT essential tremor support group is sponsored by

DRIVING DIRECTIONS TO THE STRATFORD LIBRARY:

Directions from I-95 North (from Bridgeport): Take exit 32, West Broad Street. Go through the light at the bottom of the ramp, and bear right onto West Broad Street. At the next light (Main Street), turn left, and immediately turn left again. This will reverse your direction on West Broad Street. At the third driveway on your right, enter the parking lot at the sign “Baldwin Senior Center.” We share a parking lot with the senior center. Enter the back of the Library next to the Senior Center.

Directions from I-95 South (from New Haven and Milford): Take exit 32, West Broad Street. At the bottom of the ramp, turn left onto Linden St. Turn left at the first traffic light, W. Broad St., going under the highway. At the next light (Main Street), turn left, and immediately turn left again. This will reverse your direction on West Broad Street. At the third driveway on your right, enter the parking lot at the sign “Baldwin Senior Center.” We share a parking lot with the senior center. Enter the back of the Library next to the Senior Center.

Directions from points north (Trumbull, Shelton, Derby): Take CT Route 8 to exit 8 (the sign says “Merritt Parkway North / Route 108”). Turn right onto Route 108 at the end of the exit ramp. (You cross back over Route 8). Stay on Route 108 for about 3 miles. Turn left on Route 1 east (Barnum Ave), and at the next light go right on Route 113 (Main St.). The Library is one-half mile further, on your right, near the corner of West Broad St. To use our parking lot, turn right on West Broad St. and enter the parking lot at the sign “Baldwin Senior Center. ” We are next to the Senior Center. Take sidewalk to left of Senior Center to Library’s back door.

If coming from south on Merritt: Exit 51, Nichols Ave/Route 108. Turn right onto Nichols/Route 108; continue for about 3 miles to Route 1 (Barnum Ave). (Then as above).

If coming from north on Merritt: Exit 52, bear left at split, then bear right to Route 108/Nichols Ave. Turn left at light onto Route 108/Nichols Ave. Follow for about 3 miles to Route 1 (Barnum Ave) (Then as above).

PARKING AT THE STRATFORD LIBRARY:

The Library is located between the Baldwin Senior Center and the Sterling House Community Center. Parking is available along Main St., in front of the library, or in the parking lot at the back of the library, which we share with the senior center. The entrance to the parking lot is on W. Broad St.

Dr. W. Jeffery Elias, together with his team at the University of Virginia, was the first in the world to successfully treat someone with severe essential tremor using focused ultrasound guided by MRI (magnetic resonance imaging). His cutting edge procedure, together with subsequent clinical trials, sparked additional investigations around the world in the use of ultrasound to treat brain disorders. Recently, Dr. Elias discussed his work at the TED conference in Charlottesville, Virginia.

TED (an acronym for Technology, Education, Design) is a nonprofit organization devoted to “Ideas Worth Spreading.” The group’s conferences bring together the world’s most fascinating thinkers and doers, challenging them to give the talk of their lives in 18 minutes or less! The best talks are then made available for free on the TED.com website. Dr. Elias’ Charlottesville presentation is one of them!

To watch his taped presentation, click here.

[Since Dr. Elias is the next to last speaker, you may wish to click the timeline at the bottom of the video and go directly to approximately 08:28:00.]

Thirteen people attended our first CT support group meeting on December 7th. We started with a discussion of our group’s goals and rules. Privacy and confidentiality were stressed so that everyone could comfortably share with total confidence. (See the Our Meetings page for more information on how we conduct our meetings.)

The first half of our meeting was spent getting to know each other and sharing our ET stories. An instant comaraderie was evident! How heartwarming it is to be in a room full of people who immediately and completely understand everything we say!

The essential tremor registry is a simple – yet powerful – way ET patients can help the research community. A few minutes of your time assists in the creation of a comprehensive database of ET patients that helps researchers better understand the condition. When you register and opt in, your de-identified medical information (meaning it does not include any identifying information) is pooled with information from all other participants. You continue to own your data, and you can opt out at any time. What an easy way to contribute to essential tremor research efforts! Click here to learn more about the IETF essential tremor national registry …or here to participate.