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.”

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.

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.

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.

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

Running to Make an Impact

The location was the U.S. Naval Base in Guantanamo Bay, Cuba. Second Class Petty Officer Peder Nelson had just finished his shift as a block guard at the detention facility. It was his first 90 days on the island and there was a “no alcohol consumption” policy in place for everyone working there. As he filled out a log sheet, a senior officer was watching, and approached Peder. Then the inquiry began.

“When was your last drink?” he asked.

Taken aback, Peder realized the officer had noticed his shaky hands. It was an educational moment for the officer as Peder explained that his shaky hands were not related to alcohol withdrawal, but rather a condition called essential tremor (ET).

Peder Nelson photo
Peder Nelson with his son, Davin.

This type of assumption is all too common for people with ET. Alcoholism, drug abuse and nervousness top the list of assumptions people make when they see someone’s shaky hands, head or limbs – all symptoms of ET. Because of this, people afflicted often try to hide it. They feel self-conscious, sometimes embarrassed, and often they let it inhibit them. Peder has felt all of these emotions and more.

But this fall, the 39-year-old Navy veteran from Sellersburg, IN will push past his ET, while raising awareness to the public. Peder will compete in the 6th annual Cloudsplitter 100 set for October 12-13. Cloudsplitter is a 100-mile ultramarathon taking place in the heart of Central Appalachia in the Cumberland Mountains of Virginia.

Throughout his training and his running, he will be raising money for the International Essential Tremor Foundation (IETF). Peder has set up a FundRazr site where people can make pledges to sponsor him. So far, he has raised about $2,000.

Peder has dealt with ET most of his life, but was formally diagnosed at age 20. He saw his diagnosis as a weakness and decided to get in shape. So he began running. What many don’t realize is that exercise actually make tremors temporarily worsen, but for Peder it’s worth it.

“Exercise is a really good way to feel confident about something and to feel competent about something,” Peder said.

Cloudsplitter participants are allowed 40 hours to complete the 100-mile race course. The record holder for the course did it in 22 hours. Peder expects to finish somewhere between 22 and 40 hours.

Added to the 100-mile challenge, the course will include elevation changes totaling 52,000 feet, along with rugged terrain, which includes crossing water in some areas. He will have help toward the end of the race. Many family members and friends have volunteered to “pace” him. This means they will run alongside him and cheer him on and provide that mental support needed to keep going as he gets closer to the end. He expects to be running on adrenaline that last part of the race, once the physical exhaustion sets in and lack of sleep takes its toll.

These thoughts might hinder someone else, but Peder is up to the challenge. It will be his time to shine a light on essential tremor.

Visit Peder’s FundRazr page online to learn more or to pledge your support. Or donate through through the IETF website.

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.

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.

*********

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.”