Inspired by You, Cala Health is Working with IETF to Raise Essential Tremor Awareness

By Kristie Burns,
Chief Marketing Officer – Cala Health

For five years, Cala Health has focused on building a therapy—the Cala Trio™—designed especially for the essential tremor (ET) patient to get control of hand tremors. Our campaign, “Freedom to Be,” was inspired by the wide variety of patients we met who want to get back to doing the thing they love to do. Painters, musicians, photographers, people who enjoy cooking and writing, socializing with friends in public, and being their best self.

Photo of Kristie Burns

As part of the Cala Health leadership team, I’ve met many patients. They face each day with perseverance, optimism, and understandably frustration. Please know you have motivated our team. Each patient’s story is unique. Each patient’s experience pushes us to evolve the treatment so that we can help even more ET patients. We are working hard to increase access with financial assistance through insurance coverage and additional international regulatory approvals.

The International Essential Tremor Foundation (IETF) community’s incredible enthusiasm for Cala Trio led to an overflow of volunteers in the largest essential tremor therapeutic trial ever conducted, PROSPECT. Over 260 patients at 26 centers around the U.S. enrolled in six weeks. The data from over 21,000 therapy sessions collected during the study are analyzed; initial reports were accepted and presented at three international meetings with more reports submitted. Thanks to the IETF community, we are learning more about this debilitating condition.

Cala Health is committed to raising the curtain on essential tremor with health reporters and news outlets educating the public on the most common movement disorder. This month, you might see this article in your local newspaper [link] or our posts on social media for National Essential Tremor Awareness Month. When invited, Cala is always thrilled to participate in support group meetings, local health fairs, and educational meetings for patients and loved ones.

Some of us have had the honor and responsibility of introducing new medical technologies to patients and clinicians for 25 years. Please know that you inspire and motivate us to do our best work. To learn more about Cala Trio, please visit www.CalaTrio.com

The team at Cala Health.

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School and Social Activities Were Nightmares for Me As My Peers Would Ask About My Shaking

March is National Essential Tremor Awareness Month and throughout the month we will be “raising the curtain on essential tremor” to help others understand what it is and the challenges people with essential tremor face. Everyone has a story to tell. Please share these stories with others.

By Loide Nampala

I am Loide Nampala. I am 23 years of age and from an African country Namibia. I would like to share my story for essential tremor awareness month to #RaiseTheCurtainOnET.

As a baby I had epilepsy. Then in my toddler years shaking began in my hands. As I got to pre primary school it affected my writing and social skills to the point where I tried to hide it. But I did this by making my body stiff so my peers always would ask questions wanting to know if I was sick or cold or nervous. I also developed a feeling of being scared of the unknown and always living in fear. As I was growing in years the tremors got worse in my primary and high school year, when it went to my legs and body. My parents took me to the hospital where I went through psychological treatment, which didn’t work.

School and social activities were nightmares for me as my peers would always ask me about my shaking, and sometimes laughed at me. I pretended to be sick and skipped school just to avoid being bullied. I did very bad in school and always repeated grades as I tended to avoid being bullied or asked questions. I avoided social activities even though I had the passion to take part in debate. It got to the point where I thought I was crazy and went to the mental unit to talk to a psychiatrist who then diagnosed me with generalized anxiety disorder. I was also referred to a neurologist for the shaking and was diagnosed with essential tremors and dystonia.

I just want to be at that point where I can live in the moment by accepting my condition because it limits me from daily activities and my goals.

I would like to ask to be part of a support group besides the one on Facebook so I can connect with people with the same condition as me. I would also like to take part in all activities and awareness programs.

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Industry and Advocacy Working Together to Raise ET Awareness

By Ramya Singh, Vice President – Americas
INSIGHTEC

March is National Essential Tremor Awareness (NETA) Month, a time specifically dedicated to educating the public on what living with the most common movement disorder really looks like. The team at INSIGHTEC focuses on this throughout the year as the innovator of focused ultrasound technology, an incisionless treatment option for certain people living with ET who do not respond to medications.

photo of Ramya Singh with Insightec

I just had a phone call from a woman desperate for information to help a friend of hers who is living with essential tremor, which is impacting his ability to live independently. We are inspired everyday by stories of courageous people sharing their experiences living with essential tremor. Our campaign this year is based on “Get a Grip on ET” and we are working alongside the International Essential Tremor Foundation with their efforts in “Raising the Curtain on Essential Tremor” so their voices are heard far and wide.

We share the stories of patients like Gregg. When Gregg’s essential tremor worsened, his livelihood as an electronics technician was threatened as he lost ability to use tools like a screwdriver. Determined not to let his hand tremor get in the way of his career, Gregg had the focused ultrasound treatment. Ever since, Gregg has been able to get back to performing everyday tasks with ease and can continue doing the job he loves.

There is not just one story, but thousands: Karen who went to the beach the day after focused ultrasound treatment . . . Haya who was able to get back to baking . . . Alexandra who is still amazed by her steady hand . . . Gary who was able to write a hand-written letter to his sister . . . Beverly who is back engaged with her photography . . . Bob who has been sharing his experience on Facebook.

By amplifying individual stories in awareness campaigns, we strive to increase understanding of essential tremor. We support the goal of “Raising the Curtain” to educate the public so they do not think that a person with tremor is nervous or drunk. We want people to recognize essential tremor is a challenging condition, but we also want to emphasize it is not the only thing that defines a person.  

Do you or someone you love live with essential tremor? We invite you to share your passion and what is essential to you in order to help more people understand that ET does not have to be the central part of one’s identity.

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Steadiwear is Raising the Curtain on Essential Tremor

Steadiwear has a personal interest in raising the curtain on essential tremor and helping those who have it live a better life.

Photo of Emile and Mark with Steadiwear
(From left) Mark Elias and Emile Maamary, the Steadiwear team.

While studying structural engineering at the University of Toronto, co-founder and CEO of Steadiwear Mark Elias visited his family over the winter holidays. As he was having coffee with his grandmother and discussing what his next steps were after graduation, he noticed a slight shake in her wrist. As she took her first sips of coffee, her tremors dramatically started to flare up. Her hands shook uncontrollably making her spill the coffee on herself. Mark rushed to her aid, only to find burns; it was shocking to see how difficult daily activities could become with hand tremors.

Mark decided to consult his aunt, a doctor who treats essential tremor, to discuss treatments and solutions. The only viable solutions at the time were medication, invasive surgery, and Botox injections. His structural engineering background began to kick in and he started brainstorming an alternative solution.

After countless nights of research and lengthy discussions with his aunt, Mark arrived at the ideation of the Steadi-One, the world’s first battery-free glove designed for hand tremors. A team was formed with his co-founder, Emile Maamary, whose family also suffered from tremors.

The team attended several support groups across Ontario and surveyed a lengthy list of stakeholders, including over 1,200 tremor sufferers, with high hopes of improving the lives of anyone with hand tremors and developing a worthy solution. Steadiwear’s first attempt of “raising the curtain on essential tremor” lead to starting a blog to address daily living with hand tremors. The recent launch of an online community support group on Facebook aims to build a stronger relationship with end users.

SteadiOne glove photo
Steadi-One

After significant testing, completing the regulatory requirements and multiple design iterations, the Steadiwear team launched pre-orders for the Steadi-One shortly after securing a third-party clinical trial. The Steadi-One is now available for purchase. In recognition of March National Essential Tremor Awareness Month, it is being offered at a discount price. The end goal is to help people with ET live better lives.

Learn more at the Steadiwear website or email info@steadiwear.com.

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Let’s ‘Raise the Curtain’ on Essential Tremor

It’s a fact: most people don’t know what essential tremor (ET) is. When they see someone shaking, they assume it’s “old age setting in,” or nervousness or anxiety. Once they know the truth, and learn about essential tremor, judgment goes away and understanding and compassion take over.

For this year’s National Essential Tremor Awareness Month in March, the International Essential Tremor Foundation chose the theme, “Raise the Curtain on ET.” While as a foundation we work every day to raise awareness and increase understanding of ET, March is a time when we work to rally everyone in the ET community to join us to make an impact. Let’s “Raise the Curtain!”

raise the curtain

  1. To make (something) publicly known; to reveal or disclose the truth (about something)

How can you do this? There are numerous ways. First, make it your personal goal to EDUCATE SOMEONE about essential tremor. Explain what it is and what is does. . .how it affects you. Since there are an estimated 10 million people in the United States alone who have ET, if each of these people reaches out to just one person, we will have educated 10 million more people. And if each of those 10 million people educate one more person. . . . well, you see the trend.

SHARE YOUR STORY with us. We will be posting a series of blogs on our Tremor Talk blog site. Talk about your personal struggle, or how you have worked to overcome your ET. You could share coping techniques, assistive devices or medications that work for you. (Email your story to tammy@essentialtremor.org). Or simply share your story in the comments section when you read other blogs.

ORDER A FREE ET AWARENESS POSTER and hang it in a public place. The IETF developed new posters this year that clearly define ET and provide facts (again, dispelling any myths out there). So far hundreds have been mailed out to individuals who report they are displaying them in their workplace, local hospital, doctor’s office, community center and grocery store, among other places.

DOWNLOAD OUR SOCIAL MEDIA BANNERS and add them to your own personal social media sites. These visual elements can be conversation starters for your social media followers. And watch our social media sites (Facebook, Twitter, Instagram and LinkedIn) to “LIKE” AND “SHARE” OUR POSTS. We will be posting a series of 31 FACTS ABOUT ET – one each day during March. These facts can help educate others and can help eliminate stigmas.

NETA Month t-shirt and tote

GET A “RAISE THE CURTAIN ON ET”
T-SHIRT AND TOTE BAG by making a donation to the IETF. For a $30 donation you will receive the t-shirt. For a $50 donation, you will receive both the t-shirt and tote bag. Use these to spread awareness about essential tremor all year long.

By working together, we can truly make an impact and raise awareness and understanding of ET. Let’s raise that curtain!

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Feline Friend Helps Owner Cope with Essential Tremor

Sheralyn Nicholson got much more than a pet when she adopted her cat, Willow. She got a caregiver and friend.

Sheralyn has essential tremor (ET). Her mom told her she first noticed Sheralyn’s tremor when she was in the first grade. But Sheralyn doesn’t remember life without it; she has never known anything different.

Nine years ago, she adopted a rescue cat through an ad on Kajiji (an online classified ad service popular in Canada). Her cat not only understands Sheralyn’s ET, but also tries to help her when her tremors are bad.

“She is patient with me,” said Sheralyn, who lives in Ontario, Canada. “When she sees my hand shaking, she puts her paw on it to steady it. She seems to know I’m struggling.”

But it’s not just Sheralyn’s shaking hands that Willow sees.

“When she sees my legs are shaking when I’m laying down, she lays across them to help calm them,” Sheralyn said. “It’s like having a weighted blanket. When I fall asleep she gets down.”

Studies show that animals can have a number of positive effects on humans. Human-animal interactions (HAI) have been known to increase oxytocin levels in people, according to the study Psychosocial and Psychophysiological Effects of Human-Animal Interactions: The Possible Role of Oxytocin (Beetz, Uvnas-Moberg, Julius and Kotrschal, 2012).  Oxytocin has been linked to anti-stress-like effects such as reduction of blood pressure and cortisol levels.

Sheralyn’s ET, like most, is familial. Both of her grandmothers had it, but much later in their lives. She’s thankful for the love and support Willow provides.

“Animals are amazing,” Sheralyn said. “They have a calming effect.”

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Seven Questions to Ask Before Neurosurgery

If you are considering surgery as a treatment option for your essential tremor, there are some things you will want to consider before scheduling your surgical appointment. It is vital you fully understand the possible risks and benefits of the procedure. False expectations and inaccurate information can lead to negative outcomes, so it is best to do your homework in advance.

One way to make sure your expectations are reasonable and you understand exactly what is involved is to have a frank discussion with your neurosurgeon. Having a thorough conversation well ahead of time ensures you are comfortable with your surgeon’s treatment plan, you understand what outcomes to expect, and what recovery entails for you.  

Involve your family members and loved ones and invite them to come with you to your consultation appointments. It is often best to have a second set of ears listening to the information, as it can be a lot to take in all at once. A friend or loved one might also take notes for you and help ask questions you may not have considered. Plus sometimes, it’s nice just to have an encouraging hand to hold.

Here are some questions to ask your surgeon, to help get your conversation started:

What is your experience with the procedure; what is your success rate, and what is your complication rate?

With something as delicate as brain surgery, you want to ensure your surgeon has the experience and skill to offer you the best chance of a positive outcome. A good surgeon will give you the opportunity to speak with other patients who have had the procedure and discuss what could go wrong.

Am I a candidate for deep brain stimulation, focused ultrasound, or Gamma Knife? Why or why not?

There are three different options for the surgical treatment of ET. Understanding why a procedure is or is not a good fit for you is an important part of the decision-making process.  

How much tremor control should I expect from my chosen option?

No surgical procedure will “cure” essential tremor, and each procedure has different amounts of tremor control expected. It is also good to know if the surgery you are considering can impact other areas of your body impacted by tremor, such as voice or head tremor.

What are the risks, benefits, and possible complications of this surgery?

Surgical procedures will not remove your tremor completely, forever. Being able to compare the risk factors against the possible benefits helps manage expectations and prepare you if your outcome should be less than perfect. You should ask about pain, chances of infection, physical limitations, etc.

Walk me through the procedure, including the steps I need to take to get prepared for surgery.

Will you have to shave all or a portion of your hair? Do you have to stop taking your medication? Can you drive yourself home or should someone drive you? Can you eat the day before the procedure? Are there any tests or pre-op procedures you will need to do before the actual surgery? These are all things to ask before you arrive for your surgery. Making sure you have everything done and ready on your end will help the process move efficiently. Part of being a good patient is
being prepared.

Some procedures require an overnight stay in the hospital; some may be done on an outpatient basis. It is a good idea to find out exactly how long you will need to be in the hospital, what types of follow-up services you might require, and how long it will be before you can return to your regular activities such as driving or returning to work. It’s important to follow your physician’s recovery instructions so you can return to you regular routine as quickly as possible.

How much does this surgery cost?

You should check with your insurance company in advance to ensure your physician, the facility, and the procedure is covered by your plan. If you are responsible for all or part of the costs of the procedure, be sure to find out when payment is expected. Some facilities require all payments in advance, while others will bill you for the amount not covered by your insurance.

The decision to have brain surgery is not something to be taken lightly. It is, after all, brain surgery. But for those whose symptoms are not controlled by medication(s) and whose tremor negatively impacts activities daily living such as eating, drinking, writing, grooming, etc., surgery may be the best option for tremor reduction. Developing a strong relationship with your neurosurgeon and asking some important questions is key to a positive outcome.

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GivingTuesday Donations Support Students with ET

By Tammy Dodderidge
IETF Marketing and Communications Manager

The determination and bravery of people with essential tremor is inspirational. It’s particularly touching when it comes from young people.

It’s truly the honor of the International Essential Tremor Foundation to support students with essential tremor as they journey toward adulthood and pursue their higher education. Each semester we award four college scholarships as part of our Catherine Rice Scholarship Program (named in honor of former IETF executive director who had a particular passion for these young people). This year, 100% of GivingTuesday donations made will go to the scholarship fund. GivingTuesday is an international day of charitable giving. This year it takes place on December 3.

Here’s a little bit about some our past student scholars. . . . .

Anna
2019 scholarship recipient, Anna Grace Easley, shared with us her story of becoming more frustrated every time she visited the doctor. The realization that her essential tremor would always be a part of her was overwhelming. The “aha” moment came when her doctor asked, “If you could trade your ET for any other disorder, would you?” It gave her a different perspective. She said, “I would not trade it for blindness, deafness, paralysis, amputation or any other physical disability. It was at this moment that I realized how truly blessed I am.”

Graham
2018 scholarship recipient Graham Gaddis said having ET has not been easy, but it has made him stronger and given him compassion for others.

“In the shadows and in the quiet, I have found an identity, and much of this identity has developed from facing head-on the difficulties of living with essential tremor (ET). I realize that having ET has actually strengthened my resolve to tackle life’s challenges and achieve my personal goals,” he said.

Madison
Four-time scholarship recipient Madison Young is majoring in rehabilitation science in college with plans to become a physical therapist. Because of her ET disability, she feels she will have a better understanding of others who have physical obstacles to overcome.

“It is an empowering feeling to be able to help someone,” she said. “And when you are helping someone and they connect with you because you aren’t perfect either, it makes it all worth it.”

Deirdre
2018 scholarship recipient Deirdre Maciak is looking at a career in nursing or biology because she wants to be able to have a positive impact on others who are struggling with lifelong conditions, like ET. And she’s optimistic about the future.

“I’m not the first or last teenager out there whose plans have been derailed in some capacity due to essential tremor. But, I am part of a generation of people with the condition who have better access to experimental treatments due to research and new discoveries.”

Your Donation Provides Support
Help the IETF continue to provide support for college students with essential tremor by making a donation on GivingTuesday. It makes such a huge impact. Here’s the impact it had on Elizabeth Carroll.

“Your generosity brings me one step closer toward my dream of attending law school in order to become an advocate for students with disabilities,” she said.

Donate through the IETF website or call (toll free) 888-387-3667 to make a donation over the phone.

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Gender Differences in Tremor

By Jean P. Hubble, MD

The diagnosis is usually quite obvious – rhythmic shaking of the hands. Despite the fact that essential tremor (ET) is common and easily recognized, there are many aspects about the clinical presentation which are poorly understood.

Virtually all individuals with ET have tremor of the hands. The next most frequently affected body areas are the head and voice. Head and voice tremor occurs in about 30 percent of ET patients in most reports. It is possible that age, duration of the tremor disorder, or gender might be predictive of the clinical expression of ET, including affected body region. To test this notion, we conducted a study at the University of Kansas Medical Center Tremor Clinic in 1992-1995. The results of this work were reported in the journal Movement Disorders, 1996, Volume 12, pages 969-972.

Clinical information obtained from 450 ET patients was analyzed. The average age was 67 years while the average duration of tremor was 25 years. There were 232 men and 209 women included in this analysis. Nearly all of the study subjects including men and women had tremor in the hands. However, only 30 percent of the men had tremor affecting the head and voice while 60 percent of the women had tremor of the head and voice. In addition, hand tremor was more severe in men and head and voice tremor was more severe in women. Thus, women were more often affected by tremor of the head and voice and had more severe head and voice tremor compared to men. There is no ready explanation of this finding.

It is possible that the sex chromosome (X<Y) influences the expression of tremor in men compared to women. Alternately, the sex hormones (estrogen, progesterone, and testosterone) may influence the location and severity of tremor in some way.

Another explanation for these findings is that women with tremor may have another neurological symptom called “dystonia.” Dystonia refers to involuntary, sustained muscle contractions, which can cause unusual postures including head turning. It is possible that some of the head tremor in subjects participating in the study was due to dystonia of the neck (torticollis). In contrast to gender, age and duration of tremor did not distinguish those individuals who had tremor affecting the head and voice from those who had hand tremor only.

Unfortunately, there are few effective remedies for head and voice tremor. Sometimes, the conventional tremor medications will help suppress head tremor to some degree. These medicines include propranolol, primidone, and clonazepam. Botulinum toxin injections into the neck muscles may help suppress head tremor. However, botulinum toxin injections can result in transient muscle weakness so that the patient who undergoes injections may have difficulties with head droop or difficulties with swallowing for several days or a few weeks. Botulinum toxin injections may help voice tremor when it is associated with dystonia of the vocal cords (muscle contractions of the vocal cords). Deep brain stimulation of the VIM nucleus of the thalamus has been shown to improve head and voice tremor in some patients.

Part of the limitation in our ability to better treat tremor is due to the fact that the causative brain mechanisms for tremor are not precisely understood. It is possible that a better understanding of the brain chemistry in ET will lead to better treatments.

*****

This article is taken from “Essential Tremor: What the Experts Say” third edition published in 2014 by the IETF. At the time of its publication, Dr. Jean Hubble was senior medical director, U.S. WorldMeds, New York, NY.

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This Song’s For You

By Nathan Frye

I have been a member of IETF for many years. I was diagnosed with early onset essential tremor that began when I was 16 years old. Of course back then my doctors would just say, “We don’t know why people shake” or “You are just a nervous Nellie.”

Photo of Nathan Frye

As an adult, I finally was properly diagnosed and received a lot of great information from the International Essential Tremor Foundation (IETF) which has really helped me. In my professional life as a school counselor, IETF gave me ideas on what to say when kids asked, “Why do you shake all the time?” or when adults would pull me aside as an intervention to ask what kind of crisis I was experiencing. 

Thank you, IETF. 

I am now retired but am focusing on writing instrumental piano music. I find that I have to modify how I play as things progress but it has been very therapeutic for me. I wanted to share an instrumental song I wrote that is about going through life with a great attitude and confidence even though I have essential tremor. It is called, “Shaking My Way Through.” I hope it brings you joy. 

(Click here to listen)
SHAKING MY WAY THROUGH

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