Tag Archives: ET
March is Essential Tremor Month!
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.
Our February meeting was a definite success!
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 5th) 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 5th!
Join us for our February 1st Support Group Meeting: Coping with Essential Tremor
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.
Your message has been sent
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.
Focused Ultrasound Research
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.]
We’re off to a great start!
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!
To ensure that our group meets the needs of all, next on the agenda was a discussion of topics that members would like to see addressed at future meetings. Those ideas will be incorporated into planning upcoming agendas. We then talked about such diverse assistive devices as the new Liftware spoon, the Lift Pulse app, Chinese soup spoons, straws and “sippy” cups, double-handled cups, caffeine alternatives, and voice activated software.
Dr. Duarte Machado, our group’s Medical Director, graciously answered questions whenever they arose. He also updated us on focused ultrasound research.
Everyone received an International Essential Tremor Foundation awareness button. IETF wallet cards were distributed to all, and informational materials on a variety of ET topics were available. Refreshments were enjoyed throughout the meeting, and everyone left feeling that the birth of our new group was indeed a success!
If you missed our December meeting, we do hope you’ll join us for our next one on February 1st!
Have you joined the essential tremor registry?
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.
IETF webcasts are now available online!
The International Essential Tremor Foundation offered three live webcasts over the past year. Each program included the diagnosis of ET, together with treatment options and current research. If you missed any of these informative programs, you can now watch them online! Presenters were Dr. Arif Dalvi in Chicago; Drs. Kelvin Chou and Parag Patil in Ann Arbor, Michigan; and Dr. Rebecca Tat in Greensboro, North Carolina. Since each physician discusses essential tremor from a unique experience and perspective, it is definitely worthwhile to view all three! [Funding for these IETF webinars was provided by the Medtronic Foundation.]
LiftWare has launched!
The LiftWare spoon is now available for purchase! Created by LiftLabs, this groundbreaking assistive device uses state-of-the-art tremor-canceling technology. It can actually distinguish between motion caused by hand tremors and other types of motion! In addition to the spoon, a fork, soup spoon, and key holder are in the works. Videos on how LiftWare benefits people whose tremor is most like yours are available on the LiftLabs website …so is a quick test to see if LiftWare will work for you! A detailed explanation of these amazing LiftWare products is also available on the IETF website. If you’ve been searching for a way to bring the joy back to mealtime, explore whether this innovative product might be your solution!
Join us on December 7th for the first ET support group in Connecticut!
Saturday, December 7, 2013
1:00 – 3:00 p.m.
Case Memorial Library
176 Tyler City Road, Orange, CT
[conveniently located between the Merritt/Wilbur Cross and I-95]
Registration is requested – Inquiries are invited!
To register or request information, email Helen Moser or submit the form below.
Click here for driving directions.
Your message has been sent
The CT essential tremor support group is sponsored by
DRIVING DIRECTIONS TO CASE MEMORIAL LIBRARY:
From the Merritt Parkway (either direction):
Exit 57 East (towards New Haven)…at first light on Route 34
turn right onto Orange Center Road (Route 152). Go about 1-1/2
miles, take a left onto Tyler City Road and the Library will be
on the right.
I-95 from New Haven:
Exit 41. Go right at end of ramp onto Marsh Hill Road. At first
light Marsh Hill Road becomes Lambert Road. Continue to second
light on Lambert. Go left onto Route 1 then right at next light
onto Route 152 (Orange Center Road). Go about one mile and take
a right onto Tyler City Road (across from the Green). The Library
will be on the right.
I-95 from Bridgeport:
Exit 41. Go left at end of ramp onto Marsh Hill Road. At first light
Marsh Hill becomes Lambert Road. Continue to second light. Go left
onto Route 1 then right at next light onto Route 152 (Orange Center
Road). Go about one mile and take a right onto Tyler City Road (across
from the Green). The Library will be on the right.
From New Haven (Rt. 34):
Left on Orange Center Road to center of town (about 1 1/2 miles).
Left on Tyler City Road. Landmarks: the Congregational Church and
Town Hall are at the Tyler City Road intersection. Turn left onto
Tyler City Road. The Library is on the right.
From the Valley (Rt. 34):
Right on Orange Center Road to center of town. Left on Tyler City
Road. Landmarks: the Congregational Church and Town Hall are at
the Tyler City Road intersection. Turn left onto Tyler City Road.
The Library is on the right
