Shine a Light on Essential Tremor

“Be the light that helps others see.” Anonymous

By Tammy Dodderidge
IETF Marketing and Communications Manager

Just when we thought we had heard every symptom and every challenge associated with essential tremor, we realized we were wrong. When we reached out to the essential tremor community last month and asked people to share their stories as part of National Essential Tremor Awareness Month (NETA), we received a number of responses. People sent us moving accounts of their diagnoses and their challenges. The stories are insightful and emotional, mixed with both sadness and hope. Most importantly, they are REAL.

Logo for NETA Month 2019We will be sharing these stories on this blog site throughout the month of March. Our goal is to “shine a light on essential tremor,” which is the theme for this year’s NETA Month campaign. We know when we shine our light, we heighten awareness and brighten hope. We connect people so they don’t feel alone, and empower them to speak up and educate others.

Here’s a sampling of the personal stories we will be sharing through this Tremor Talk blog site during March:

The Story of Anna. Anna thought being pushed out of a tree when she was 10 years old is what caused her tremor to begin. Growing up, she would shake her leg to try to disguise her tremor as nervousness. There have been times throughout her life when she has felt like a “freak” because of her ET.

The Story of Lucy. Lucy is an 84-year-old widow with essential tremor “everywhere.” She was actually able to hide it from her husband until he passed away. She struggled to find a doctor who would diagnosis and treat her.

The Story of Jody. Jody works two jobs so she works seven days a week. She has learned to make accommodations for her tremor. Some days her muscles hurt and her whole body hurts, but she is thankful she can still move.

The Story of Rachel. Diagnosed at age 5, Rachel has made it one of her goals in life to raise awareness to ET any way she can. From creating videos, to making presentations to being an ET Support Group leader, she is not giving up hope that someday there will be a cure for ET.

There are many other stories as well. The mission of the IETF is to provide HOPE to people with ET through awareness, education, support and research. March is our biggest time to shine a light on ET, and we hope you will join us by taking part in some way.

Be sure to take a look at our webpage where we have shared our NETA Month posters, banners and other materials, as well as ideas. Make a donation to receive an NETA Month t-shirt and tote bag, which will help raise awareness all year long. And stay tuned to this blog site to share your own comments and stories.

Educating Others About Invisible Disabilities, Including Essential Tremor

Each semester, the International Essential Tremor Foundation presents four scholarships to students with essential tremor. The scholarships represent hope for the future, and provide support to these students during a pivotal time in their lives. As part of the scholarship application process, each applicant is asked to write an essay that answers the question, “How has essential tremor affected my life?” The following essay is from one of our fall 2018 scholarship recipients

 

By Megan Hartley,
Student at Florida Southern College

When I was 15, I was diagnosed with essential tremor. In March 2018, my 15-year-old sister was diagnosed with essential tremor. This letter is for her.

You have heard all the negative experiences that have been a part of my diagnosis: the accusations that I stole my grandmother’s handicap because I couldn’t possibly have one of my own; being bullied because I got extra time on exams that I “didn’t need;” and not being able to walk after a long day. People will be cruel because they do not understand.

What I want you to know is that it isn’t something that has to define you or be completely negative; so many positives have come out of it for me. It has allowed me to better understand what it is truly like to have a diversity that no one understands. It has pushed me to try to educate those who do not understand invisible disabilities in a positive way.

In the spring of 2016, I was allowed the opportunity to be on the cover and to speak out about what it is like to have anxiety and essential tremor for the International Essential Tremor Foundation’s magazine, Tremor Talk.

At Florida Southern alone, in my role as a resident advisor, I have been able to design community-wide programs that encourage students to ask questions and to get knowledge about those diversities they do not understand. The series that went on to win community program of the year included invisible disabilities, culture and identity. I have had the opportunity to present at the Florida Resident Advisor Conference and took home an award for my presentation about invisible disabilities inclusion in the residence halls.

Quote about invisible disabilitiesThis semester, I am partnering with other campus organizations to promote invisible disabilities week on campus in October. I have had the opportunity to do multiple projects and papers about disabilities and their relationship to the world around us. You are able to combat the negativity by allowing it to be an education opportunity for those around you.

Overall, what I want you to understand, is that, for me, the positives outweigh the negatives. I believe that essential tremor has allowed me to be a more compassionate person. Though I cannot speak to every diversity, I feel as though I can understand what it is like to have your identity questioned simply because it is not seen from the outside.

Though some days the tremors make it difficult to stand, I will always stand up for those who need it.

*********

Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.

 

 

Surgical Treatment of Essential Tremor

(This is an article that Dr. Arif Dalvi wrote for our May issue of Tremor Talk magazine. It’s just a sampling of the stories we include in each issue. Annual donors to the IETF receive Tremor Talk magazine in the mail three times per year.)

By Arif Dalvi, MD, MBA
Director of the Comprehensive Movement Disorders Program
Palm Beach Neuroscience Institute 

Background
Many patients with essential tremor (ET) get relief with medications. However, some patients, despite trying multiple medications, have a disabling tremor affecting activities such as eating, writing or using tools. Severe tremor also leads to social embarrassment and isolation. Surgical options can significantly improve quality of life in such patients.

Surgical treatment for ET goes back many decades. Abnormal circuits in a deep brain structure called the thalamus misfire sending signals to the muscles causing a tremor. In the 1970s, Irving Cooper, a neurosurgeon from Columbia University in New York, introduced the idea of making a lesion (similar to a small stroke) in the thalamus to suppress these tremor circuits. However, long term experience shows tremor relief from this method called thalamotomy may wear off in a few years. Patients with tremor in both hands need a thalamotomy on both sides of the brain, leading to higher risk of complications including difficulty with speech compared with a lesion only on one side.

The Birth of DBS
To find the best target the patient undergoes brain mapping while awake. The area within the thalamus is given a test dose of electrical stimulation to see if the tremor subsides. Alim Benabid, a neurosurgeon from Grenoble in France, realized stimulation on a constant basis could provide long-term control of tremor. He developed a brain pacemaker connected to a wire in the brain targeting the thalamus and the idea of deep brain stimulation (DBS) was born. This is the most established surgical technique for control of tremor. DBS was approved by the FDA in 1997 for ET and is covered by Medicare and many private insurers for appropriate patients.

DBS has the advantage of not requiring a stroke-like lesion in the brain. Unlike with a misplaced thalamotomy, side effects can usually be reversed by turning the pacemaker off. Both sides of the brain can be targeted without inducing the kind of complications seen when thalamotomy is done on both sides. DBS settings can be gradually increased over the years if the tremor gets worse. The battery for the DBS pacemaker requires replacement every three to five years. It must be kept in mind that there is approximately a two percent risk of a brain bleed with initial electrode placement.

DBS results depend on accurate placement of the electrode. New types of electrodes allow electrical stimulus to be directed in different directions. These directional electrodes allow for good tremor control while minimizing side effects even without perfect placement. DBS technology continues to improve with directional electrodes, smaller and longer lasting pacemakers, and rechargeable batteries being some of the innovations.

MRI-Focused Ultrasound
MRI-Focused Ultrasound (MRI-FUS) is the most recent surgical option. High energy ultrasound waves are targeted to the thalamus with high-quality MRI imaging. The ultrasound beam makes a lesion like a thalamotomy. The procedure is done on an awake patient in an MRI suite. A lighter test dose is applied to see if tremor improves. If there are no side effects, a full intensity dose is applied. MRI-FUS does not require a burr hole in the skull or electrodes and pacemakers within the body. In this sense, it is “noninvasive,” but a misplaced lesion can still result in permanent side effects. Small numbers of patients with ET have undergone this procedure, usually with favorable results. How these patients will fare in the longer term remains to be seen.

Surgical option choices for severe tremor should be made under the guidance of a movement disorders neurologist highly experienced with these procedures.

 

Share Your ET Stories with Me

Hello to everyone in the essential tremor community!

I am new to the International Essential Tremor Foundation and wanted to introduce myself. I am the new marketing and communications manager. My role involves development of messages and stories to educate the public about essential tremor and the impact it has on more than 10 million people nationwide. I serve as editor of our magazine, Tremor Talk, and our Tremor Gram enewsletter. I oversee our social media sites, Facebook and Twitter, and manage our website, among other responsibilities.

I must confess I had never heard of ET before I applied for this position. How could that be? It impacts so many people and yet I was not aware. But I am catching up. Each day I read and hear stories from people of all ages who are living with ET. Just this week I was reviewing the applications from our scholarship recipients and was in awe of their positive outlooks, and also saddened by what they have had to endure. One student was diagnosed at age six, so he has had little experience of NOT having ET. One is a mother of three who said her biggest challenge has been answering her children when they ask, “Will I shake like that when I grow up?”

I am proud to work for an organization that is serving the ET community with awareness and education initiatives, and support, like scholarships. And last year we donated $75,000 toward research initiatives to further better treatment options for ET.

The learning will continue for me, and I am asking all of you for your support in this area. I would not be able to do my work without the ET community at large who share their stories of hope, frustration and, sometimes despair. No, some stories are not happy ones, but these are the ones that may resonate with others who are battling each day. I will do my best to share these stories and keep the lines of communication open. And, I look forward to the day when I can write that story about the breakthrough in research that will help everyone. I know it’s coming . . . keep the faith. . . and keep in touch with me.

I look forward to hearing from all of you out there. Write to me at tammy@essentialtremor.org.