Tremor Gram Archive 2011
Essential Tremor vs. Dystonia
There are about 20 conditions that can cause tremor. The most common of all is essential tremor, followed by Parkinson’s disease and then dystonia. Although all these conditions cause tremor, the treatments can be as unique as the conditions themselves. Find out the difference between essential tremor and dystonia.
Spirit of Hope Award
In March, the International Essential Tremor Foundation presented the very first Spirit of Hope Award to Shari Finsilver in recognition of her extraordinary effort to bring hope to those suffering from essential tremor (ET) and their families. For years, she has supported the IETF’s mission and the ET community by raising awareness, leading fundraising efforts, leading a support group, and donating time, money, and resources generously on behalf of the IETF.
Each year, the Shari Finsilver Spirit of Hope Award will be presented to a person that embodies Shari’s spirit and commitment to combating ET, supporting the IETF, and spreading hope to those with ET and their loved ones.
Ten Tools for Dealing with Chronic Illness
Who thinks about tools for dealing with a chronic illness? It’s not something you consider until it’s too late. When you become sick you lose control of so many things in your life that it becomes extremely important to take responsibility for what you can control. That means instead of reaching for the half-gallon of ice cream to throw yourself another pity party you instead choose to go for a walk, to meditate, read a book or watch your favorite comedian on TV. You do what you know you need to do to help yourself. When you take action to help yourself, you empower yourself which eventually will lead to better health!
Congressional Reception Gets Things Shaking
On March 30, the IETF hosted a congressional reception in Washington D.C., to thank those Representatives who supported House Resolution 1264, designating March as National Essential Tremor Awareness Month.
More than fifty people attended the reception, in addition to our Executive Director and members of our Board of Directors. There were many interesting and in-depth conversations on how to increase ET awareness at a national level and the importance of continued funding for ET research. Several follow-up meetings have been scheduled. We’ll keep you posted on future developments.
Tulips for Tremor 2011
The tulip was originally a wild flower, grown in Central Asia. It was first cultivated by the Turks as early as 1000 B.C.E. The flower was introduced in Western Europe and the Netherlands in the 17th century by Carolus Clusius, a famous biologist from Vienna. For thousands of years tulips have been the heralds of spring. They celebrate the cycle of growth and the return of warmth and abundance after the long winter.
For the IETF, tulips represent hope for the future and new beginnings. The goal of Tulips for Tremor is to raise funds for much needed research and awareness initiatives. Although we won’t be offering actual bulbs for sale this year (due to substantial increases in the cost of bulbs and postage), you can still get involved by donating to this worthy campaign.
Tulips for Tremor Across the U.S.A.: For each donation received, a virtual tulip will be “planted” in your city. You can watch our Tulip Map to see if your city and state are covered with the blooms of hope. Each flower represents your dedication to finding better treatment options, raising more awareness at every level and to someday find a cure for this life-altering condition. Donate online or call the IETF toll free at 888.387.3667.
Essential Tremor and the Brain: Research Findings of the Essential Tremor Centralized Brain Repository
Previously it had been suggested that there were no changes in the brain of individuals with ET. With data available for more than 75 Essential Tremor Centralized Brain Repository (ETCBR) ET brains, researchers have already demonstrated that this is not the case. In fact, there seems to be at least two distinct types of changes in ET brains which indicate that there may be at least two distinct types of ET. READ MORE
Did General Douglas MacArthur have Parkinson’s Disease?
Winner of the American Academy of Neurology 2011 Lawrence C. McHenry Award (an Award for the History of Neurology), this article tackles the belief that MacArthur had Parkinson’s disease. Researches look at video and archival evidence to reveal the truth. READ MORE
Leg Tremor vs. Restless Leg Syndrome
By Joseph Jankovic, M.D.
There are many conditions that can cause tremor in the legs, including Parkinson’s disease (PD), ET, and orthostatic tremor. At least half of all patients with PD have tremor involving their feet or legs, usually present when they are sitting or lying. Leg tremor is especially prominent in patients with young-onset PD who have a mutation in the parkin gene. Typically the “rest” tremor associated with PD is usually accompanied by other PD symptoms such as slowness of movement (bradykinesia), stiffness of muscles (rigidity) and gait and postural difficulties.
Find Support on Facebook
Not every community has an active essential tremor support group. And not every person has a lifestyle that lends itself to volunteering to start a group. So what do you do when the nearest group is 200 miles away? If you have an internet connection and a Facebook account, you have access to a “virtual” support group that is (as of today) 1,434 members strong.
When asked why our “fans” keep coming back to our page, I think Rebecca Thomas put it best. “People that don’t have ET don’t understand what it’s like to have this disease. Until I found this [Facebook page] I had no one to talk to or ask questions as I don’t know anyone else that has ET. I am all about educating myself to as much information as I can get and I think I have found the place and the people to help me here.” Fan us and lets start shaking things up!
New Congressional Neuroscience Caucus is Open for Membership
We are delighted to see a Caucus that seeks to raise awareness about the millions affected by neurological disorders and mental illness starting up in Congress. After years of work and speaking out on your behalf, finally it seems that someone in Washington is listening. If our Leaders don’t know about conditions like essential tremor, how can they be expected to support pro-neurological causes and legislation? Take a moment and use this link to urge your Legislator to become a member of this new Caucus (link kindly provided by the American Brain Coalition.) Remember, a single voice is seldom heard, but a thousand voices shake the world! Read more about our efforts in Washington DC.
College Scholarships Now Available
We are proud to announce that we have four $500 scholarships available for post-high school students. The IETF/Robbie Gould Scholarship is for anyone of any age; all you need is have ET and be going to a licensed, accredited institution of higher learning. Let us help you move forward. Find out more and apply today!
Master’s Thesis Looks at Early Onset Impact
Lauren Nicole Ahles, grad student at Brandeis University, has ET. She wondered how having ET early in life affects day-to-day living; everything from personal relationships to family planning. She interviewed eight subjects (including IETF Ambassador, Preston Boggess) and developed her Master’s thesis based on these interviews. It comes down to making medical providers more aware of the many ways ET can affect a patient’s life. It’s not all about shaky hands. Read Lauren’s study …
Octanoic Acid Study Produces Desired Results
Many essential tremor patients have noticed a reduction in tremor when they drink a glass of wine or have a cocktail with dinner. Many neurologists actually encourage essential tremor patients to have a drink in social situations to help ease their tremor temporarily and take the edge off any social anxiety they may be feeling as a result of the condition. But why does a moderate amount of alcohol have such a noticeable effect on ET?
Researchers are exploring the answer to that and many other questions right now. Today, researchers are studying Octanoic Acid, a metabolic byproduct of alcohol (1-octanol), for use as a new treatment option for those with ET. This treatment is not available to the public as of yet, but the initial study results are very promising. Read More
Tulips for Tremor: A Road-map to Hope
Okay Montana, New Mexico, South Dakota and Nevada … your spot on the map is looking pretty bare! As an addition to our Tulips for Tremor campaign, this year we are commemorating every Tulips donation with a mark on the official IETF map! Every dollar donated funds desperately needed research to find better treatment options and an eventual cure for this life-altering condition. Funds from this campaign also provide additional resources to help spread ET awareness. Show your support and make your mark! And when your children and grandchildren no longer have to face a life of challenges with ET, you’ll be glad you did. Check out the Map Make a Tulips for Tremor donation
Genetic Research May Have Found Culprit Genes
The exact cause of ET is unknown. That is why the treatment options available are so limited and the medications used are not specifically designed to treat essential tremor – they just happen to have the happy side-effect (for some) of tremor reduction. It’s hard to treat a condition when you’re not sure what is causing it. But as research in the field continues, and with a grant funded by the IETF, some interesting advances in identifying the genetics behind the condition are coming to light. Two genes, LINGO-1 and LINGO-2, are being explored to see if the proteins they produce are the cause of rhythmic shaking you know all too well. Read More
Giving from the Heart
Margaret Mead said, “Never doubt that a small group of committed individuals can change the world. Indeed, it’s the only thing that ever has.” She was so right. A small group of committed individuals in Katy, TX decided to do something that would allow a small group of friends to get together on a regular basis and do something good for a worthy cause. Their solution was to design and sell jewelry as a fundraiser for essential tremor research. What the group received was much more than tired, shaky hands and donation checks … Read this story and more in our next issue of Tremor Talk, the IETF member magazine. Not a member? Join the IETF and find inspiration in stories of determination and perseverance from people just like you.
Children with ET
As a parent, you want to impart your child with certain traits; sharing their toys, being a good friend, minding their manners and doing their homework first thing after school. But no parent wants to hear that their child also inherited a chronic neurological condition. It’s not easy raising children to begin with, but having a child affected by essential tremor adds additional obstacles in achieving milestones in fine motor skills, physical and social/emotional development. The IETF provides parents, teachers and other caring adults with a guide to essential tremor in children. Please share this information with your child’s teacher, the school’s administrative staff, before and after school program coordinators and school nurses. A little awareness can go a long way in removing barriers for the smallest of our movers and shakers. Let’s make this school year more accommodating and enjoyable for everyone!
iGive + You
We invite you to begin using iSearchiGive.com every time you search the web. Each search earns $0.01 for our mission. While a penny seems like a pretty small amount, we all search the web hundreds of times every month, and our combined efforts can truly add up. To date, the IETF has earned nearly $310 just from people doing what they would do anyways … surf the web. Try it today – it’s free!
Webinars on ET
Thanks to a grant from St. Jude Medical, the IETF is pleased to offer six web-based seminars on essential tremor. For those who can’t make it to one of our traveling educational seminars, these webinars offer additional information and insight from some of the top neurologists in the United States.
Carson and His Shaky Paws Grampa
CARSON AND HIS SHAKY PAWS GRAMPA, the first book in the Shaky Paws Grampa series, is a story about the relationship and love between a grandfather (who has both Parkinson’s disease and essential tremor) and his seven-year-old grandson. The story is designed to help parents and grandparents comfortably talk about the early onset of tremor and address common questions and concerns children may express.
The second book in the series, CARINA AND HER BIONIC GRAMPA (working title), is in progress and continues to portray the true story about Kirk “Shaky Paws” Hall’s journey with PD and ET. The story is intended to provide a comfortable and safe setting through which parents and grandparents may talk about more advanced tremor symptoms with their children and grandchildren.
Carson and His Shaky Paws Grampa was conceived and written by Kirk Hall and illustrated by Alison Paolini. Order a copy.
Comedy, according to Robin Savage, has power. “In our politically correct world, the comedy stage is still a place for free speech and free expression,” explains Robin. “Even in medieval times, it was only the jester who could speak the truth to the king. . .and live.” Robin should know. She plays the jester and speaks the truth many nights a week as a stand-up comic in the west-central Florida area. Robin has ET.
Now, Robin has a new gig as host of Prescribed Comedy on Comedy Slam Radio. WWW.ComedySLAMRadio.com is a 24/7 Comedy Internet Radio Station playing famous comedians from around the nation and featuring live shows from veteran comics to open mic’ers, club owners to comedic writers. Robin’s focus will be how laughter is a therapy that should be taken by everyone. Tune in on Tuesdays from 1-2:00 p.m. EST to get your healthy dose of funny!
Check out last Tuesday’s recorded session featuring our very own Rebecca Dye, IETF Communications Coordinator and Support Group Liasion, as Robin’s special call-in guest.
Assistance for the Uninsured
By: Laura S. Lehman, Phar.D.,Clinical Pharmacy Coordinator,Carroll Hospital Center, Westminster, Maryland www.Medscape.com
The IETF routinely takes questions from patients who are unable to afford their medications and don’t know where to turn. According to the US Census Bureau, 50.7 million people (16.7%) were without some form of health insurance in 2009. Even among those with insurance, a significant proportion of patients have inadequate prescription coverage. Patients either have to seek sources of assistance to pay for medications or forgo treatments altogether.
There are, however, some resources for the uninsured and under-insured that might be able to help you better afford your meds. Read the full article.
Last chance for Tulips
Looking for better treatment options? Want something new and exciting to happen in essential tremor research? Are you waiting for the day when you can tell your children or grandchildren that essential tremor is a thing of the past and they no longer have to worry about it? We all are.
In order to get these and many of the questions we have about essential tremor answered, we need research! The IETF funds small-scale pilot research studies on ET. Researchers use these studies to test their theories and gain enough credible data to be funded by a large-scale research grants elsewhere. If you want answers, support the cause. Support research. Support a less shaky future for your kids. Please donate to research today!
IETF Annual Report
Ever wonder what it is we do here at the IETF? Ever wonder how your donation dollars are used? We have just completed our 2011 Annual Report and would like to share it with you. Find out where our funding comes from, how much free educational materials we send out in a year and all the highlights of our fiscal year 2011. Read the IETF’s 2011 FY Annual Report
New Monitoring Device May Aid in Tailored Treatment
Great Lakes NeuroTechnologies, formerly a division of Cleveland Medical Devices, has received two federal grants totaling nearly $2 million. The grants enable Great Lakes to further develop its technologies for home-based monitoring of patients suffering from movement disorders. The larger grant from the National Institute on Aging, $1.7 million in Phase II funding, will go toward the development of ETSense™. This portable essential tremor monitor will classify tremor type and rate tremor severity continuously throughout the day while a patient performs typical activities. This should help clinicians to better prescribe treatment and aid in the development of novel therapeutic interventions.
In May 2010, the IETF distributed a research study notice to its members in the Cleveland area to assist ET research by Cleveland Medical Devices. Information gathered from participants in this data collection study was instrumental in the development of the portable essential tremor monitor that was awarded this grant. Follow this link for more information about the grant.
Free ET Seminars – The Home Stretch
Every year the IETF facilitates twenty or more free educational seminars all over the United States. As we approach the holiday season, our seminar season is slowly winding down. However, we still have five sessions left and if you are in Nevada, California, Michigan or Florida you still have a chance to come out and learn more with us.
• Reno, NV (Flyer) (Map) Thursday, October 27
• Santa Barbara, CA (Flyer) (Map) Saturday, October 29
• Las Vegas, NV (Flyer) (Map) Saturday, November 5
• Ann Arbor, MI (Flyer) (Map) Thursday, November 17
• Jacksonville, FL (Flyer) (Map) Saturday, November 19
Call us toll free at 888.387.3667 or click here to register.
DaTscan™ Makes Diagnosis Easier
DaTscan™ is the first objective diagnostic tool approved by the FDA to be used for telling the difference between Parkinsonian syndromes and other movement disorders like essential tremor. DaTscan™ is an imaging drug that is injected into the bloodstream to help assess dopamine, one of the chemicals involved in controlling movement. A special device, called a gamma camera, then takes pictures of the brain; looking for the telltale signs of reduced uptake of the imaging drug in certain dopaminergic areas of the brain. Although DaTscan™ cannot diagnose ET, it can be used to rule out a Parkinsonian syndrome.
According to the National Institute of Neurological Disorders and Stroke, approximately 50,000 new cases of Parkinson’s disease are diagnosed in the United States each year. Unfortunately, the symptoms of PD are very similar to symptoms of other movement disorders, such as ET, and both are often misdiagnosed. Now, this FDA-approved imaging procedure can confirm the presence of Parkinsonian syndromes.
Only a doctor can prescribe DaTscan™ and it is not available in all areas. Look here to locate a DaTscan™ imaging center.
Research Study Announcement
Brigham Young University is currently recruiting patients with essential tremor to participate in a research study investigating the control of upper limb movements. The goal of this research is to better understand the movement impairments associated with essential tremor and improve assistive and rehabilitative devices for patients with ET.
Subjects who participate in this research will be asked to make a number of upper limb movements under different conditions, freely or in interaction with objects or a robot, while researchers record various movement characteristics such as motion, force, and/or muscle activity.
The research consists of one session lasting less than 2 hours, is completely non-invasive, and is performed in the research laboratory of Steven Charles, Ph.D., on the campus of Brigham Young University in Provo, Utah. Only those who are 18 or older are eligible to participate.
If you are interested in participating in this study, please contact Dr. Charles at firstname.lastname@example.org or (801) 422-7369.
We get our best tips from our members. These are just a few of the great tips from our Northbrook, IL support group.
- Stress and anxiety will exacerbate tremor, so try to find an activity that helps you relax and brings you joy. Whether it is exercise, meditation, prayer, reading a book, or creating art, find what is best for you and do it every day.
- When pouring or measuring liquids or solids into an eating or storage container, put the container into the sink and pour down into it. For instance, when measuring ground coffee, put the grounds into a measuring cup in the sink and pour them down into the basket or filter.
- On your computer, under the Control Panel, adjust the keyboard settings to ignore repeat characters.
- Adjust the mouse settings on your computer, to slow down the double-click and mouse tracking speed.
- Always carry self-adhesive address labels with you to use when asked for contact information.
- Take an active role in your local support group. Ask if you can assist the Leader in any way. Sometimes when we help others, we end up helping ourselves.
For more coping tips, click here.
The mission of the IETF is to offer hope to the millions affected by essential tremor by raising awareness of the condition, providing educational materials to all those in need, funding ET research and offering caring and compassionate support.
The IETF staff (all four of us) would like to thank all of our volunteers who live that mission every day. We could not do half of the outreach and awareness without our volunteer Support Group Leaders, Ambassadors and Board members. Thank you for your unwavering dedication to the IETF mission and the encouragement you provide your friends and neighbors. To find out more about the IETF’s volunteer program, visit our Volunteer page.
Want a way to stay out of those long department store lines this holiday season but still get everything your list? This year, think Amazon! Not only can you get just about anything you heart desires, but you can also make sure a portion of your total spending comes back to the IETF.
Visit the IETF homepage (www.essentialtremor.org) and click on the Amazon icon at the bottom of the page. Now go shopping! That’s it. Amazon will send a donation check for a portion of your total sale directly to the Foundation.
Avoiding the lines, bumper-to-bumper traffic and pushy people fighting over that last parking spot AND giving a little back to your favorite cause. Priceless!
Free Info for Physicians
From time to time, patients come across physicians unfamiliar with essential tremor. Some are unaware of how to properly diagnose ET, the common medications used for treatment, or the emotional and psychological impact of this life-altering condition. There are thousands upon thousands of different conditions and diseases. It’s unrealistic to expect that every doctor will be well versed in every one of them.
That’s why the IETF provides free information for physicians. Your doctor can go to our Physicians Resources webpage and request a variety of materials, from coping skills and facts about ET to common medications and surgical options, or print an order form and give it to your doctor to complete. Ask him/her to keep educational materials displayed in their office for other ET patients. There is no cost whatsoever. No shipping charges. No handling fees. Just quality and timely information to help those diagnosed with essential tremor better understand the condition and what options are available to them.
IETF Funded Study Finds Potential Cause of ET
Researchers from the CHUQ research center and Université-Laval have published promising findings about a potential cause of essential tremor (ET). The team’s findings were published in a recent edition of the scientific journal Brain. The research team noticed a decrease in the concentration of GABA receptors in the cerebellum of patients suffering from ET. Read more.
This research was made possible by a grant from the IETF. Help the IETF continue funding groundbreaking research. Please consider making a donation.
Running for Love … and Money
Five years ago Sean Clay’s wife, Naomi, was diagnosed with ET. Watching her struggle with tremor, the stereotypes and the lack of public understanding made him realize just how strong she is and that there is a huge need for awareness of this life-altering condition. Sean explained, “She motivates me to be better each day.” And that motivation has led to a complete life change for Sean.
Two years ago, Sean was overweight and a smoker. He knew he needed to do something different about his lifestyle and Naomi stood with him all the way. Sean decided to begin training for his first marathon to both raise funds for the International Essential Tremor Foundation and bring attention to this little-understood condition. Sean wants his fundraiser to aid in increasing awareness around the world and the search for a cure!
Movement Disorder Specialist Selected For Patients’ Choice Award 2011
Dr. Theresa Zesiewicz, a Movement Disorder Specialist from Tampa, FL, has been ranked among the top physicians in the nation based on high marks given on patient reviews. Patients share feedback about their experiences, rating various components of the care they receive; accuracy of diagnosis, amount of time spent with the doctor, the doctor’s bedside manner and follow-up care.
Congratulations to Dr. Zesiewicz for her fine work in the Tampa area. You can find Dr. Zesiewicz and other top Movement Disorder Specialists on our online physician listings. Or, for more information on the Patients’ Choice Award winners, visit PatientsChoice.org.
Essential Tremor vs. Parkinson’s Disease
Although essential tremor is eight times more common than Parkinson’s disease and affects an estimated ten million Americans, it is often misdiagnosed. Ever wonder what the real differences between these two movement disorders are? Download our flyer and learn more.