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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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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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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Instead of Thinking About My Tremors, I’m Focusing on the Warmth From Helping Others

By Barb Cole Smith
Support Group Leader,
Kalamazoo, MI ET Support Group

Holiday time is fast approaching. As I sit here contemplating the stress of the added responsibilities and work involved with Christmas time, and how that will increase my tremor level, I realize how much more productive I could be if I planned ahead. This leaves me more time to enjoy my family and friends, and the pleasure we could all have by being together, and less time to think about myself.

I could start by acknowledging that I brought some of this on myself and then think about how I can deal with things less stressfully. Rather than buying numerous gifts for all, buying just one gift, with a gift card attached might even be more appreciated. How much time could be saved!

Barb with her husband (far left) at her 8Oth birthday celebration. The couple is shown here with their son and daughter and their spouses; four of their grandsons; three of their great grandchildren; and a great granddaughter-in-law.

Perhaps even a theme, with a different restaurant gift card for everyone. My hubby and I could enjoy dining out at the selected restaurants, after a busy day, to avoid meal preparation that evening. Meal preparation and eating brings up so many unpleasant things. I have discovered that since I need so much help with preparation, selecting one-dish meals or things that could be heated easily have seemed to be the best answer. Using bowls with rounded edges instead of plates, and eating with heavy soup spoons help a lot. What should I do when I get an invitation to dinner at a friend’s home and worry that something might be served that I simply can’t get to my mouth? I suggest that we meet at a local restaurant where I can select my meal. Always explaining why. ET is nothing to be ashamed of but merely my way of life.

In preparing for this date, I try and make sure I am well rested and am in a good frame of mind. Using relaxation techniques could be different for all of us. Mine seem to center around music, either listening to it or playing the piano. It’s amazing what a difference this makes.

In thinking about the next few weeks, I promise to not spend my time thinking about myself but thinking about those who mean so much to me and how I can show my appreciation to them. Most importantly, I hope to seek out and help some less fortunate than myself. I truly feel that I won’t be thinking so much about my tremors but soaking in the warmth I get from helping others.

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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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Her ET Has Taught Her to Advocate for Herself

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 2019 scholarship recipients.

By Elizabeth Carroll
2019 IETF Scholarship Recipient,
Student at University of Massachusetts Amherst

For the longest time, I didn’t notice my shaking hands. Classmates would point it out in the cafeteria and I’d respond quizzically. By eighth grade, however, my hands were nearly impossible to ignore. Writing became difficult; at times I would finish a sentence only to realize I couldn’t read my own handwriting because my hands had a mind of their own. Small tasks, like eating and buttoning my own shirt, brought frustrating challenges on my worst days and minor irritations on my better days. Eventually, a neurologist diagnosed me with essential tremor (ET). While the condition runs in my family, I found myself caught off guard. My diagnosis labeled me with a disability, the same disability that I witnessed rob the independence from my elderly aunt.

Afraid, frustrated and self-conscious, I began to work with doctors and my school to manage my condition. By high school, well-versed in my 504 Plan (a plan that documents how a school will provide support and remove barriers for a student with a disability) and armed with special pencils from my school district’s occupational therapist, I entered freshman year feeling more confident about my tremor than ever before. My accommodations were transformative in the classroom, but I quickly realized that in order to use them, I had to talk to my teachers about my 504 Plan. With that came a new valuable skill: how to advocate for myself.

The year I got my diagnosis of essential tremor was the year I discovered my fascination with the law. Advocating for myself in the classroom was my first taste of being an attorney. I was my own client, negotiating and listing my needs to meet my goal. As my high school career continued, it became clear that my tremor was not going away, but neither was my fervent desire to attend law school and spend my career advocating for others.

My tremor and love for the law have become intertwined. Quite literally, my tremor is there whenever I participate in mock trial and government programs. Public speaking is a battle between my expressive hand gestures and violent trembling. Once, I was even marked down in the National Judicial Competition for having “distracting hands.” While I was outraged at that scorer’s ignorant comments and point deduction, I returned the next summer to the National Judicial Competition to play a defense witness who was the victim of domestic violence. My performance included “believable shaking hands” and earned me two nominations for the Outstanding Witness Award, making me the first in Massachusetts history to get that close to winning a coveted glass gavel award.

Outside the courtroom, however, my tremor has taught me about law on a deeper level. I have a unique appreciation for special education law, as I understand the difference that accommodations can make in a child’s education and future. When I graduate college and law school, I hope to be right back where I am today. Yet, instead of advocating for myself in the classroom, I’ll be advocating for another student with a disability in court or at an IEP (Individualized Education Plan) meeting.

*********

Do you want to help support students with ET during their educational journey? Make a donation to the ET scholarship fund online.

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My Shaky Quaky Gramma

By Kelly Roberts
   I love my shaky quaky Gramma. I give her lots of hugs. My shaky quaky Gramma loves me. 
   We play basketball. But sometimes her legs get wobbly. So, she sits in a chair and yells, “Great shot!” when I make a basket.
   I love to play with my shaky quaky Gramma. But sometimes she is pretty shaky. One day we were building with blocks and she accidentally knocked down my building. I cried even though I know she didn’t do it on purpose. I think sometimes it makes her cry too.
  We read lots of books together. But sometimes I have to hold the book because she is too shaky. I turn the pages and she reads to me in funny voices.
   We play board games. But sometimes she accidentally hits the board and knocks all the pieces off onto the floor. We laugh as we put it back together.
   Sometimes she gets embarrassed when my friends are around. But I tell them not to be afraid of my shaky quaky Gramma and they understand.
   We play video car racing and she tries not to shake too much. But she usually comes in last. I love my shaky quaky Gramma when she doesn’t mind if I win.
   We take short walks by the river and throw rocks. She has to use her cane so I don’t run way ahead but stay close in case she falls.
   We like to paint pictures. But sometimes she makes blops on the page and makes them into dinosaurs. Some blops make good butterflies so we paint them together. I love my shaky quaky Gramma! 
   My Gramma told me she has essential tremor (ET). A tremor means something that shakes. She said something works different in her brain and she makes shaking movements she can’t control. My Gramma can’t help it when she shakes and quakes. It will never go away and she can’t give it to anyone like a cold.
   My mom and I make cookies. My shaky quaky Gramma used to make cookies too. But sometimes she would spill the flour or burn herself on the cookie pan. So now we play silly music and she sings along and dances with us in the kitchen. My shaky quaky Gramma is a good dancer. You should see us shake and quake while we bake!
   But sometimes it makes me extra sad she shakes and quakes. I just give her a bigger hug and tell her I love her. She hugs me back extra tight with her shaky quaky arms and tells me she loves me.
   Let’s go shake and quake Gramma!

Kelly is a student at the Institute for Children’s Literature. She wrote this because she thinks it’s important to teach children empathy and to help them learn to not be afraid of people who shake or are different. She said, “Stigma falls way the more we talk about this things.”

 

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ET, Exercise and Longevity

The question about whether or not to exercise if you have essential tremor comes up often. This article was written several years ago by Dr. Jankovic, who serves on our medical advisory board. But the information is worth reprinting.

By Joseph Jankovic, M.D.
Director, Parkinson’s Disease Center and Movement Disorders Clinic, Department of Neurology, Baylor College of Medicine, Houston, Texas

Any discussion of the management of a chronic disease would not be complete without emphasizing the importance of physical activity. Exercise has been shown to lower blood pressure, reduce obesity and prevent cardiovascular disease, but there is little data on the role of exercise and essential tremor (ET).

In fact, many patients with ET observe that their tremor is markedly exacerbated after strenuous physical activity or exercise and understandably wonder if they should avoid such activity.

As long as there is no cardiac, orthopedic or other contraindication, patients with ET should remain physically active. Be reassured that worsening of tremor after exercise is expected due to the outpouring of adrenaline (or epinephrine and norepinephrine) during exercise. Adrenaline, released during any physical or psychological stress, stimulates beta adrenergic receptors in muscle spindles, leading to increased muscle activity, manifested as worsening of tremor. This effect, however, is temporary and the tremor usually returns to its previous state after a few minutes of rest.

Alcohol and propranolol, a beta adrenergic blocker, can reduce stress-induced exacerbation of ET, hence the two drugs are often used to “calm” the nervous system.  Even professional actors often use propranolol to minimize the tremor effects of anxiety associated with stage fright.

Many studies have shown that exercise benefits not only the body but also the brain. It has been shown to improve learning, memory, and depression; it also appears to protect the brain from neurodegeneration. [Cotman et al, 2007].

Although Parkinson’s disease is different from ET (despite the occasional overlap of the two disorders), studies on exercise in Parkinson’s disease may be relevant to patients with ET.

In a prospective study of 48,574 of men and 77,254 women, higher levels of physical activity was associated with lower risk of Parkinson disease [Chen et al, 2005].  Based on systematic literature review, the Practice Recommendations Development Group from The Netherlands concluded that there is sufficient evidence to recommend physical therapy and exercise to improve balance, and training of joint mobility and muscle power and to improve physical capacity of patients with Parkinson disease [Keus et al, 2007].

There are many other studies that provide evidence exercise may be helpful in improving motor function [Kwakkel et al, 2007], although firm evidence that exercise lowers the risk of Parkinson disease is still lacking [Logroscino et al, 2006].

Exercise may prolong life not only by preventing or reducing the risk of life-threatening disorders, but also by slowing the aging process. One of the most compelling arguments in favor of exercise as an important anti-aging factor is the recent finding that leukocyte telomere length, a biological indicator of human aging, correlates with exercise.

In a study of 2,401 twin volunteers, comprising 2152 women and 249 men, who were asked to complete detailed questionnaires about their level of physical activity, smoking status, and socioeconomic status, the leukocyte telomere length was 200 nucleotides longer in the most active subjects as compared to the least active subjects during their leisure time (P<.001), even when adjusted for age, sex, body mass index, smoking, socioeconomic status, and physical activity at work.

It has been postulated for a long time that patients with ET live longer than those without it. The Russian neurologist, Minor, suggested in 1935 “that a factor for longevity was also contained in the tremor gamete.”

In a study published in 1995 it was found that parents of ET patients who experienced tremor lived on the average 9.2 years longer than those parents who did not have tremor. Since the parents with tremor who lived longer probably had ET, we concluded that ET confers some anti-aging influence and significantly increases longevity.

  • While there is no obvious explanation for this striking observation, it is possible that: patients with ET have an underlying personality trait that encourages dietary, occupational, and physical habits that promote longevity.
  • Perhaps, the small amounts of alcohol to calm the tremor might prolong life.
  • Finally, the tremor itself might be viewed as a form of exercise that would have beneficial effects on general health and on longevity.

Further studies are needed on the potential anti-aging effects of ET, and whether exercise confers additional benefits by favorably modifying the course of the disease.

References

Cherkas LF, Hunkin JL, Kato BS, Richards JB, Gardner JP, Surdulescu GL, Kimura M, Lu X, Spector TD, Aviv A. The association between physical activity in leisure time and leukocyte telomere length. Arch Intern Med 2008;168:154-8.

Cotman CW, Berchtold NC, Christie LA. Exercise builds brain health: key roles of growth factor cascades and inflammation. Trends Neurosci 2007;30:464-72. Trends Neurosci 2007;30:489.

Chen H, Zhang SM, Schwarzschild MA, Hernan MA, Ascherio A. Physical activity and the risk of Parkinson disease. Neurology 2005;64:664-9.

Jankovic J, Beach J, Schwartz K, Contant C. Tremor and longevity in relatives of patients with Parkinson’s disease, essential tremor, and control subjects. Neurology 1995;45:645-8.

Keus SH, Bloem BR, Hendriks EJ, Bredero-Cohen AB, Munneke M; Practice Recommendations Development Group. Evidence-based analysis of physical therapy in Parkinson’s disease with recommendations for practice and research. Mov Disord 2007;22:451-60.

Kwakkel G, de Goede CJT, van Wegen EEH. Impact of physical therapy for Parkinson’s disease: A critical review of the literature.  Parkinsonism and Related Disorders 2007;13:S478-S487.

Logroscino G. The role of early life environmental risk factors in Parkinson disease: what is the evidence? Environ Health Perspect. 2005;113:1234-1238.

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