If You Could Trade Your ET for Any Other Disorder, Would You?

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 Anna Grace Easley
2019 IETF Scholarship Recipient,
Student at William Carey University, Hattiesburg, MS

Anna Easley, 2019 IETF Scholarship Recipient

Like millions of others in the United States, I suffer from essential tremor or ET. At the age of two years old, my mom started to notice my hands shaking when I would go to reach for my toys. I didn’t realize that my hands shook until the age of four years old when I was learning to tie my shoes. From that point on, I knew that simple everyday tasks were slightly more difficult for me than they were for other kids my age. I would struggle to tie my shoes, put my hair in a ponytail, paint my nails or even color a picture. My tremors got worse with age and I began to notice that other people in my family, like my father and grandfather, had the same condition.

By the time I started high school, my ET got to the point where I started to get picked on at school. People at school would call me “shakes” and would laugh every time I would spill a drink or drop something due to my ET. It was at this point when my family and I decided that I should go see a doctor.

At the age of 14, I was diagnosed with essential tremor by Dr. Shankar Shiva Natarajan. He prescribed me medicine to help my ET, but the medicine could only do so much. The thing that I am most passionate about in my life is music and theatre, so when ET started to affect how I play guitar, how I held a microphone or how I was able to perform on a stage, I would get frustrated with myself because there was nothing I could do to control it. I got to the point where I would cry every time I went to the neurologist. Every time, he would tell me, “If you do not let your tremors bother you, they will not bother anyone else.” I took this advice and I would try to not let it affect me, but my tremor continued to affect how I viewed myself. I felt as if I was not fit to be a musician because of my condition, and the thought of that was devastating.

At my next doctor’s visit, Dr. Natarajan told me something that completely changed my perspective. He asked me, “If you could trade your ET for any other disorder, would you?” I began to ponder this question. 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.

From that point on, I decided that ET is a part of my life, but it cannot dictate who I am as a person. I have made the choice to pursue music despite any difficulties I may face. Although ET has had a great impact on my life, I will continue to push through and face every challenge with a positive attitude.

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

Record Clinical Trial Enrollment Made Possible by IETF and Their Members

Patient recruitment is usually the biggest challenge in conducting clinical trials. Thanks to the International Essential Tremor Foundation and their members, Cala Health recently enrolled the largest therapeutic essential tremor study in record time.

By Kate Rosenbluth,
Founder/CEO of Cala Health, Inc.

About five years ago, my co-founders and I spun Cala Health out from Stanford University to develop a wearable therapy for essential tremor. We spent several months observing and interviewing patients, neurologists and neurosurgeons, and were captivated by the unmet need to give people back their hand control without undergoing brain surgery. The International Essential Tremor Foundation and its members gave generous time to helping us understand the condition and how we could help. We formed a company and began product development of a peripheral stimulation device worn on the wrist to interrupt the tremulous signal driving the tremor in the brain.

Photo of Cala CEO Kate Rosenbluth

Our careful research and development process brought us to the final stage, clinical trials. Clinical trials produce the most reliable data available for health care decision making. They follow strict scientific standards to protect patients and produce dependable study results. Oftentimes, the single greatest challenge in conducting a successful clinical trial is recruiting participants. Typically, most participants are recruited by physicians serving as Principal Investigators for the study, or by engaging advertising agencies to inform potential participants that a clinical trial is available. This can take months, if not years, and require significant investment in advertising.

Fortunately, Cala Health has partnered with the International Essential Tremor Foundation, who announced this research opportunity to their members nationwide. We immediately received interest from qualified participants who have been struggling with essential tremor for years and connected them with the leading neurologists in movement disorders who were participating in our trial. We have been so pleased with the response. Most recently, this generated and enrolled hundreds of patients into our PROSPECT study in record time. During the study, patients wore the therapy on their wrist like a smart watch and patterned electrical stimulation was delivered to the nerves through the skin twice per day over a three-month period. This fast enrollment enables a key milestone to share the results later this year and make this FDA-cleared therapy commercially available. 

People who take part in clinical trials are vital to the process of improving medical care. IETF is an essential partner to Cala Health informing the ET community of the clinical research opportunities to advance medical knowledge and patient care.

About Cala Health, Inc.

Cala Health is a bioelectronic medicine company transforming the standard of care for chronic disease. The company’s wearable neuromodulation therapies merge innovations in neuroscience and technology to deliver individualized peripheral nerve stimulation. The first indication for Cala Health’s wearable therapy is essential tremor, a disease experienced by more than seven million people and characterized by severe hand tremors. Visit www.CalaTrio.com to learn more.  New therapies are under development in neurology, cardiology and psychiatry. The company is headquartered in the San Francisco Bay Area and backed by leading investors in both healthcare and technology.

Research Brings Hope for a Brighter Tomorrow, and World Without Essential Tremor

We sometimes take for granted the vast history of medical research and its impact on human ailments and diseases. Most people have heard of polio and tuberculosis, which today are easily preventable with a vaccine. Organ transplants extend life for many and the pacemaker regulates the heart’s rhythm for people with irregular heartbeats. Physicians can remove cataracts and cancerous tumors, and use artificial insemination to help couples conceive.  And surgical options for essential tremor (ET), including focused ultrasound and deep brain stimulation, have enhanced the quality of life for thousands. None of these would be possible without medical research.

The International Essential Tremor Foundation (IETF) knows through continued medical research, there will one day be improved treatments and possibly a cure for essential tremor. So each year, we continue to fund research projects to address the nosology, etiology, pathogenesis and other topics relevant to essential tremor. Through promoting and awarding research grants, we also know we can stimulate inquiry into essential tremor (ET) by leading scientists.

IETF Research Appeal Graphic 2019

July is a time when we focus on essential tremor research and work to raise money for research grants. Since 2001, the IETF has dedicated more than $800,000 toward essential tremor research and we are not done yet.

This year, we presented a $25,000 research grant to Dr. Adrian Handforth with The Veterans Affairs Greater Los Angeles Healthcare System. His research project is titled, Evaluation of an a6ßy2 GABA Receptor-Specific Drug as Potential Therapy. It will explore the potential of developing a drug that mimics how low doses of alcohol can suppress the effects of tremor, but with more selectivity of molecular targets to try to avoid adverse effects found with other medications used for management of essential tremor.

Please consider supporting our “Shine a Light on Essential Tremor Research Campaign” this month. Watch for a special letter in your mailbox outlining how you can help. Or go online and make a donation.

Research provides hope for all of us, and means a better and brighter future for the next generation. Perhaps our scholarship recipient, Deirdre, summarized it best when she said:

New and ongoing research for ET gives hope to us young people. Even though our conditions may worsen over time, there are also so many ways that modern medicine can help us live our lives normally and we all need to work toward that goal together.”

My Desire to Become a Clinical Psychologist Was a ‘Worthy Expedition’

Each semester, the International Essential Tremor Foundation (IETF) awards four $1,000 college scholarships to students who have essential tremor through its Catherine S. Rice Scholarship Fund. As part of the application process, students are asked to write an essay on the topic, “how essential tremor has affected my life.” The following essay is from one of our spring 2019 scholarship recipients.

By Casey Becker,
Swinburne University

During my first year in a psychology degree, I began to shake and was diagnosed with severe essential tremor. This, understandably, made me depressed, confused and distraught. I immediately sought help from a clinical psychologist, and her contribution to my well-being has confirmed that my desire to become one myself was a worthy expedition. During my second year of college I would find myself zoning out a lot. My memory didn’t seem to be what it once was. Then I started having strange head spins with dreams in them. That’s the only way I know how to describe a temporal lobe epileptic seizure (TLE).

photo of Casey Becker, IETF scholarship recipient 2019

Understanding and accepting that both of these conditions may gradually get worse is a difficult feat and becomes more complex every time I have to let another hobby go or fundamentally change the way I do something in order to account for my tremor or epilepsy. I am a curious and passionate academic, but I also have a creative side. My love for drawing, painting, sewing and playing music have often turned from being a source of comfort to a source of stress. However, I did not give them up. I changed musical instruments. I switched from drawing the painting. I found a keyboard that allowed me to write. And I found new ways to remember things even during seizure clusters. Somehow, I managed to complete my degrees full-time, with a HD average (high distinction).  

By studying the brain, my disorders have turned from a psychological burden into a fascinating first-hand experience of atypical neural function. I picked up every bio-psychology and medicine elective I could, then enrolled in an applied science honours degree. I hope to use my experience as a clinical psychologist and a researcher to help individuals, while contributing to the knowledge that can improve our understanding of psychology.

I am undergoing a Ph.D. in psychology at Swinburne University. I come from a low SES single-parent family. I am a first-generation high school graduate, and the only person in my immediate family to attend college.

I Can’t Be Rehabilitated from Having ET; But It Gives Me an Advantage to Helping Others

Each semester, the IETF awards four $1,000 college scholarships to students who have essential tremor through its Catherine S. Rice Scholarship Fund. As part of the application process, students are asked to write an essay on the topic, “how essential tremor has affected my life.” The following essay is from one of our spring 2019 scholarship recipients.

By Madison Young,
Arkansas Tech University

I turned 20 last month and read a list of 20 things every 20-year-old should know. Number 17 was “There Is No Roadmap.” That is very true. I can look back now and remember standing at certain crossroads and wondering which way to turn. Different paths have different benefits and obstacles. You can hardly see 20 yards down the path sometimes. As I look back on just a few of my turns, I realize that having essential tremor (ET) has had an impact on the choices I have made in direction, not in a negative way but an impact all the same.

Madison Young, IETF scholarship recipient

Having ET does affect my life in a variety of ways. Some tasks are simply harder than they would be if my hands and arms would just be still. Plus, when the tremors take over my body, I get a little embarrassed because everyone notices, then they try to act as if they didn’t. It seems like there is a polite protocol for noticing something different about other people.

One of the turns ET has led me to make is my field of study in college. I am a rehabilitation science major planning on moving into physical therapy. Unlike people I will eventually treat/help, I can’t be rehabilitated from having ET. But it certainly causes me to relate. It gives me an advantage to helping others over someone who has never had an obstacle to overcome. I understand to some extent what it is like to be viewed as different.

In all of my classes we talk about people with disabilities, and the main point always made is most people have disabilities, but not always visible disabilities. We are all “disabled” in our own way. Some disabilities you notice right away and some you don’t. Being diagnosed with ET at such an early age has helped me learn a lot about human nature. I just want to be able to help people live the most normal lives possible.

Currently there is no cure for ET. I am ok with that. I am at peace with who I am and ET doesn’t define me or what I can accomplish. In my classes, I am learning how to help others reach that point and just deal with the situation in a positive manner. It is an empowering feeling to be able to help someone. And when you are helping someone, and they connect with you because you aren’t perfect either, it makes it all worth it. Yes, having ET has changed my life and my path, but I believe it is for the better.

It has been almost six years since my diagnosis and I can’t help but wonder where I will be at age 26. What will I be doing and how will my tremors have progressed? While there is no roadmap, there is a road seen clearly in hindsight. I hope I always remember to look back at my turns in life that have made the difference.

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Applications are being taken for fall 2019 scholarships from the IETF.  If you are a current or incoming college student with essential tremor, complete the application on the IETF website. The application deadline is May 1, 2019.

I Do Everything I Can and Try Not to Let My ET Get Me Down

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others.

By Elissa,

I was diagnosed with essential tremor about 12 years ago, but I probably had signs of it earlier than that. I have head, vocal, hand, body and foot tremor.

My ET is familial. My paternal grandmother’s head shook but I thought it was old age. My father’s hand and head shook but I thought he was a messy eater. Also, when his head shook I thought he was just in deep thought. When I was very young I recall my paternal grandmother’s head shaking and it scared me . . . I didn’t know why her head shook.

NETA month 2019 Logo

In my late 50s, I was president of my temple’s sisterhood. I remember shaking a lot when I had to speak in front of people. But I think the stress of the presidency brought out my tremors. 

For years I have attended the Essential Tremor Support Group in Pontiac, MI. The support group leader, Tom Pilarski and his wife Sabrina, are WONDERFUL people! My husband, Danny, is a huge support to me as well. He joined me at my first ET Support Group meeting and I met so many great people who had tremor like me. I was given materials to read from the International Essential Tremor Foundation (IETF) so I could find out as much as possible about essential tremor.

At one meeting, Dr. Peter LeWitt spoke. He is in charge of the movement disorder department at Henry Ford Hospital in West Bloomfield (not far from my home). I made an appointment with Dr. LeWitt and he told me about five different medications for essential tremor and explained their side effects. I picked Topamax because one of the side effects was weight loss. BIG MISTAKE! I slept all day! I have also taken Klonopin and primidone. Now I am on propranolol. This medication is the first medication that I feel has actually worked on me. I feel less “shaky” if that’s possible. I’ve been taking the medication for about a year now. I know the tremor has not disappeared but I FEEL a difference.

Three words I would use to describe ET as it relates to my life are: shakiness, debilitating and annoying.

Once when I had a pedicure, my left foot tremored so badly that the whole salon was in shock. You could see the looks on their faces. I was shocked as well. I had no control over my left foot. It was jumping all over the place! No one said a word but the looks on their faces said it all.

One of my side effects of ET is typing the wrong letters on the keyboard. I’m so happy that there is a red underline when I make a mistake so I can correct it. My handwriting is also illegible.

My vocal tremor bothers me more than any of my other tremors. I have Botox injections to help remedy the vocal tremor. Right now it’s fine but it has to be administered three to four times a year. After the infection, my voice is very weak for about three weeks before my “normal” voice kicks in.

My head tremor is something I just have to live with. I don’t see it, so it doesn’t bother me as much.

ET is my life. I live my life the best I can. I try to do everything I can and try not to let ET get me down. I try to support those who I know can use the support. I have connected many people with the IETF and my support group as well. I try to educate people about what ET is and how it is different from Parkinson’s disease.

I’m living with ET and I’m not going to let it get me down.

How Does Medicare Cover Essential Tremor?

By Danielle Kunkle Roberts,
Co-Founder of Boomer Benefits

Danielle Kunkle Roberts, Boomer BenefitsEssential Tremor (ET) is a neurological disorder that causes involuntary shaking and trembling. It affects approximately 10 million people in America, according to the International Essential Tremor Foundation, which makes ET the most common neurological disorder.

While not dangerous, the condition can make simple tasks such as tying your shoes or drinking a glass of water more difficult. ET can also get worse over time.

Because ET is more common for people in later adulthood, it’s good to know how Medicare will cover treatment of this disorder.

Medicare Part A Hospital Benefits

Original Medicare is made up of Part A hospital benefits and Part B outpatient benefits. 

Part A covers inpatient hospital stays, skilled nursing facility care, and hospice care. This is the part that would pay most of the expenses related to a hospital stay for deep brain simulation (DBS), which is a common surgery that provides relief from tremors and stiffness.

Medicare Part B Hospital Benefits

Medicare Part B covers outpatient care. This includes doctor visits, preventive care, lab-work, diagnostic testing, emergency care, outpatient surgeries, physical therapy, durable medical equipment and much more.

Part B will pay for your patient visits to your specialist, the necessary neurological exams and lab-work and any outpatient procedures used to control ET symptoms.

One outpatient procedure to treat ET is focused ultrasound treatment. This minimally invasive treatment was approved by the FDA in 2016. It is the first brain disorder treatment to be allowed reimbursement by Medicare Part B. The procedure destroys a small amount of brain tissue that contains nerve cells which are responsible for the tremors.

Earlier this summer Medicare announced benefit coverage for patients in 16 states. Additional states were added this past fall. There are numerous medical centers that now treat patients with Essential Tremor using MR-guided focused ultrasound. A Medicare physician must document why the procedure is reasonable and necessary.

Medicare Part D Drug Benefits

Outpatient medications to help treat your ET symptoms will fall under Part D. Medicare Part D is optional coverage  beneficiaries can purchase to reduce the cost of their prescriptions.

These plans are sold by private insurance companies and each plan has its own premiums, copays, coinsurance, pharmacy network, and drug formulary. Beneficiaries can use Medicare’s Plan Finder Tool to search for the right plan.

Your Medicare Cost-Sharing

As with all insurance coverage, Medicare covers a share and the member also pays a share of their coverage. This is called your cost-sharing and it usually comes in the form of deductibles, copays, and coinsurance.

Part A has a $1364 deductible in 2019, and Part B has a smaller $185 annual deductible. Medicare Part B covers 80% of your outpatient procedures. You are responsible for paying the other 20%.

Fortunately, you can supplement your coverage with either a Medicare supplement policy or a Medicare Advantage plan. Both types of coverage will help to limit your out-of-pocket expenses on the gaps in Medicare.

Beneficiaries can call 1-800-MEDICARE or consult a Medicare insurance broker for guidance in choosing a plan that fits their needs and benefits.

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Danielle K. Roberts is a Medicare insurance expert and co-founder at Boomer Benefits, a licensed agency that helps beneficiaries with their supplemental coverage options.

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.

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

 

 

Clinical Trials Are Vital to Improving Medical Care

Manish Gupta has over 15 years of experience in developing and executing global clinical trials in cardiac and neurological devices (including those developed to manage essential tremor). He shares how clinical trials work and how the IETF partners with Cala Health to recruit participants. 

 

By Manish Gupta
Vice President of Clinical Affairs
Cala Health, Inc.

Photo of Manish Gupta with Cala HealthClinical trials are research studies that explore whether a medical device, drug or treatment is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses, diseases, disorders or groups of patients. Clinical trials produce the most reliable data available for health care decision making. They follow strict scientific standards to protect patients and help produce dependable study results.

Clinical trials are one of the final stages of a long and careful research process. The process often begins in a laboratory, where scientists/technologists first develop and test new ideas. If an approach seems promising, the next step for higher risk devices may involve animal testing. This shows how the approach affects a living body and assesses its safety. However, an approach that works well in the lab or animals may not always work well in people. Thus, research in humans is needed.

For safety purposes, clinical trials start with small groups of patients to find out whether a new approach causes any harm. In later phases of clinical trials, researchers learn more about the new approach’s risks and benefits in larger groups of patients.

Quote from Manish Gupta for Research Month blogA clinical trial may find that a new device, drug or treatment

1) improves patient outcomes; or
2) offers no benefit; or
3) causes unexpected harm

All of these results are important because they advance medical knowledge and help improve patient care.

Patients participating in research are generally referred to as “subjects.” During a clinical trial, doctors, nurses, social workers, and other health care providers might be part of the subject’s treatment team. They will monitor the subject’s health very closely, conducting more tests and medical exams than standard care.

Taking part in a clinical trial can have many benefits. If a new treatment is proven to work, subjects are among the first to benefit.  Even if subjects don’t directly benefit from the clinical trial, the information gathered can help others and add to scientific knowledge. People who take part in clinical trials are vital to the process of improving medical care. Many subjects volunteer because they also want to help others.

Many government agencies, companies, patient advocacy groups and other organizations sponsor clinical trials. Collaboration between two or more of such groups/organizations is common in clinical research to create patient awareness about the clinical research and the disease. Cala Health’s collaboration with International Essential Tremor Foundation (IETF) is one great example of a partnership that creates patient awareness throughout the United States about essential tremor (ET) clinical trials. Cala Health, Inc. is actively conducting ET clinical trials of its wrist-worn therapy at leading centers in the US.

IETF is an essential partner to Cala Health informing the ET community of the clinical research opportunities to advance medical knowledge and patient care.

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About Cala Health, Inc.
Cala Health is a medical technology company pioneering a new class of electrical medicine. The company is merging innovations in neuroscience and electronics to deliver individualized, prescription neuromodulation therapies. These therapies treat chronic disease non-invasively by stimulating peripheral nerves with body-worn electronics. The company is headquartered in the San Francisco Bay Area and backed by leading investors in both healthcare and technology, including Johnson & Johnson Innovation – JJDC, Inc., Corp, Lux Capital, Lightstone Ventures, GV, dRx Capital and Action Potential Venture Capital.

The IETF funds research grants, advocates for more research on essential tremor, and works with companies like Cala Health to recruit participants for research studies. Your donations to research are the reason the IETF is able to carry out these initiatives and work toward improving the quality of life for every generation living with essential tremor. Help us keep hope alive.