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.

Having ET Has Given Me a Different Outlook on People with Disabilities

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 Madison Young,
2019 IETF Scholarship Recipient,
Student at Arkansas Tech University, Russellville

I think there are about seven basic things that people all have in common. We like to laugh. We have good days. We have bad days. We like to smile. We sometimes cry. We have days where we just feel lazy. We like to be liked. The things that make us different are in no way basic. Differences come in so many forms and varieties and complexities. Differences in human beings are as numerous as the stars. Differences are what make us unique and interesting. My differences make me, me. I am Madison Young, a high school graduate, a full-time college student, a Sunday school teacher, a sister, a daughter and a person with a disability.

Madison Young Fall 2019 Scholarship Recipient

Recently I was talking with a sorority sister about my tremors. She has noticed them many times but finally asked the question. I gave her the basics about essential tremor and told her I am technically disabled. Her response was amazing. She told me she was disabled, too! We were both so surprised and excited. We high-fived each other and laughed. Something that made us different made us the same. We realized we weren’t alone. I sometimes find myself trying to hide this that makes me different, but I forget that it bonds me with others and forms a connection. As we started to laugh and carry-on another sorority sister looked at us like we were crazy. We shared with her what we were laughing about and she was surprised about the disabilities. Not only are we both completely abled bodies to anyone looking from the outside, but we also are not ashamed to share it. I could tell this other sorority sister of mine was now sad for us. There is no reason to be, but that is normally the first response. I also know that with her, a little label will go under my name in her mind and that is how she will think of me. It’s not bad of her however. It will be one of the differences she remembers about me. And my sorority sister with the disability – I will probably make a mental label about her, too, but it will fall under a category called common connection. It was a way for us to grow closer even if we do not have the same disability.

When I look at the big picture, and try to think about how my tremors have negatively affected my life, I come up blank. There is no defining moment where I go “oh, there, that’s where tremors ruined my life.” Having essential tremor has given me this connection to others that I never realized I could have. It has given me a different outlook on people with disabilities because not all of them are physical and we all struggle with different things. At the end of the day, we are all just people with a few basic things in common and an overabundance of differences. Differences are what make us . . . us.

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

Shaking Hands Have Become My New Norm, but So Has Spreading Awareness

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 Alyssa Jones
2019 IETF Scholarship Recipient,
Student at Trinity University, San Antonio, TX

I have known since I was very young that helping others was my passion, and I wanted to make a big impact. The first time I found a community that fit me perfectly was when I joined a student government program called Youth and Government. After five years in the program, I have learned an unfathomable amount about writing laws, debating policy and overall government operations. However, during my first year at our district conference, I was told that I had to give a speech to hundreds of students convincing them to choose me to represent them. Many people are terrified of public speaking, but I truly enjoy it. I took the five minutes I was allotted in between other speeches to write my own and got up to deliver a confident message. After it was over, I was elated and grateful that I had the support needed to push myself through. Others congratulated me on a successful speech, then asked if I was nervous. They had noticed my hands trembling.

My goal is to attend law school and possibly become involved in the non-profit sector. I want to make changes that impact people in a positive way and do good for our communities. To prepare myself, I have spent my time in high school involved in related activities such as youth and government, student council and debate. All of these activities require public speaking and high visibility. However, sometimes when I’m shaking, I don’t want to be in the spotlight. Essential tremors have had an impact on my daily life and activities, such as eating and applying makeup. I use weighted utensils and sometimes have assistance getting ready for the day. However, now it is affecting my future dreams. I am worried that I will be viewed as the insecure, anxious person that nobody will take seriously – all because of my tremors. This is especially true because I have seen my disorder progress over the past two years.

Shaking hands may have become my new norm, but so has spreading awareness. Although tremors disrupt my life and can be embarrassing, I try to educate those around me. It is important to talk about tremors and shine a light on this disorder so that advancements can be made toward a cure. I won’t let my tremors steer me from my ambitions; I may just need some help along the way.

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

Shine a Light on Essential Tremor

“Be the light that helps others see.” Anonymous

By Tammy Dodderidge
IETF Marketing and Communications Manager

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

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

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

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

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

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

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

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

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

Preparing for Your Doctor’s Visit

By Dr. Rodger Elble,
Department of Neurology
,
Southern Illinois University School of Medicine

Preparing for your visit with a movement disorder specialist will increase the odds of accurate diagnosis and appropriate treatment at an affordable cost. A complete and accurate medical history is crucial.

rodger elble photo

Here are some things you can do to facilitate a successful clinic visit.

1.  Prepare a written chronological history of your problem. What was your initial symptom (e.g., hand tremor) and when did this symptom begin? It is important to estimate the time or age of onset as accurately as possible. This may be long before the time when your tremor and other symptoms became disabling or really bothered you. Describe how the tremor started (e.g., suddenly or gradually) and how the tremor has progressed. Which areas of your body were affected initially and subsequently? Has there been a recent or rapid worsening? If so, was this associated with other events or medical problems (e.g., a new medication)? Note any changes in your balance, coordination, gait, and speech. Tell your doctor about any involuntary movements other than tremor (e.g., body jerks, twisting movement of the neck or limbs).

2.  Note any medications, substances or circumstances that make your tremor better or worse. Prepare a list of all treatments you have tried for your tremor.

3.  Prepare a family history. Document any relatives with tremor or other neurological conditions such as Parkinson’s disease, dementia, dystonia, ataxia, neuropathy, etc.

4.  Prepare a list of past medical problems and note whether they had any effect on your tremor. A recent medical summary from your primary care physician will be helpful. Bring a complete list of current medications and their dosages. Your pharmacist can help you with this.

5.  Be prepared to discuss how your tremor affects your daily life. Which activities are affected most? How has your handwriting changed? How does tremor affect your occupation and social life? Has your tremor affected you emotionally? Have you been depressed? You should be as accurate and candid as possible.

6.  Do not stop any medication unless requested by your doctor.

Your doctor will perform a thorough neurological examination to assess tremor severity and look for abnormalities other than tremor. Patients referred for essential tremor frequently have some other condition that is revealed by a careful neurological exam. There is no test for essential tremor.

At the end of your visit, make sure you understand your diagnosis and treatment options. Ask questions. Discuss your goals and expectations with regard to your tremor, but understand that available treatment is not always adequate. Consider participating in a research study if one is available and appropriate for your condition. Ongoing and recently completed research studies can be found online at ClinicalTrials.gov. 

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.

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.

 

 

 

 

 

 

 

 

 

ET Has Affected 5 Generations in My Family

By Shari Finsilver,
VP of the IETF Board of Directors

Increasing awareness about essential tremor (ET) has been my passion for almost 20 years.  But, I must confess … I was not very open about my tremors prior to this. In fact, I did everything imaginable to hide them, even from my parents!

My courage came from all the members of my support group. It is often said that when we volunteer, we get much more back than we give. Well, that was so true in my case when I decided to start a support group in Michigan in 2000. I marveled at the candor, courage, and self-pride in many of those members and, eventually, decided to follow their lead to become more open about my own ET.

Joining the IETF Board
When I was invited to join the IETF Board of Directors in 2001, I found another platform that I could use to further raise awareness, while also getting involved in education programs, fundraising, and research. I am committed to expanding the work of the IETF, the most recognized organization helping ET patients and families.

ET began challenging my life at 11 years old. I’ve heard it said that those of us with ET are much more intelligent and creative. Well, I’m not sure I would go so far as to say that … but I did become very creative in developing ways to cope with these troubling tremors! When the IETF compiled a list of coping tips, I was able to share all of mine with all of you.

The Choice to Have DBS Surgery
After having lived with increasingly challenging ET for almost 40 years, I decided to have deep-brain stimulation (DBS) surgery in 1999. DBS changed my life.

ET has, so far as I know, affected five generations in my family. I will continue to do everything in my power to help those of us with ET get more effective medical treatments, increase awareness so the public doesn’t misjudge and label us, better educate the medical community, and fund research that will discover a cure.

Join Us to Help Raise ET Awareness
I hope I can count on each of you to do something that helps the ET community. So many great ideas are listed on the IETF website. If all of us raise our voices about ET, we can educate the world.

 

 

No Boundaries, No Favorites. Essential Tremor Has No Familiar Face.

By Tammy Dodderidge, IETF Marketing and Communications Manager

Who do you picture in your mind when you think about someone who has essential tremor? Chances are, it’s a senior adult or a grandparent. The reality is essential tremor has no familiar face. It afflicts people all ages and races. While senior adults struggle with it, so do middle-aged adults, teens and even toddlers. It doesn’t discriminate based on the color of your hair, or eyes or skin.

This is our message during National Essential Tremor Awareness (NETA) Month in March. We want people to understand that ET has no boundaries. It doesn’t play favorites. It is a serious, debilitating condition for more than 10 million people around the world.

Background on NETA Month
Thanks to a three-year effort by the International Essential Tremor Foundation (IETF), in 2010 Congress passed a House resolution that officially designates March as National Essential Tremor Awareness Month. This month gives ET a platform. Most people have heard of Parkinson’s disease and the physical tremors associated with it, but not many have heard of essential tremor. We need to let them know it exists and then educate them about the needs of people with ET.

The next time you are in a crowd, look around and chances are, someone there has ET. You won’t know it because it’s something that people work hard to hide. You won’t know it because people are embarrassed by it. You won’t know it because people fight it and deny it. You won’t know it because many people who have ET suffer depression and isolate themselves so they don’t even leave their houses.

Take Action
What can you do to take part in NETA Month? Many, many things!

  • The IETF has created some special NETA Month social media banners specifically for Facebook and Twitter. Download them from our website and use them on your social media sites during the month of March (as the cover art or just share them with your friends and followers).
  • Order one of our NETA Month posters and hang it in a prominent area where people will notice it: your church, the grocery store, the library, your office. When someone asks, “What’s this poster? What is essential tremor?” you will have done your job in raising awareness!
  • Watch this Tremor Talk blog site during March. We will be featuring some guest writers who have ET, work in the ET community and advocate for people with ET. Their first-hand stories promise to be insightful and educational – and heartfelt. Share these blogs on your social media sites, or send the links to your friends by email. RAISE AWARENESS!
  • Hold a Do It Yourself (DIY) Fundraiser to support the work the IETF does toward education, research and advocacy. We have a list of DIY fund raising ideas on our website, and we also have special DIY  fund raising posters you can order from us for free to advertise your events.
  • Watch your mail for a letter from the IETF and make a donation to receive an NETA Month t-shirt and/or tote bag. These items are one more way to get ET in the public eye. Wear your shirt proudly and use your tote when shopping, or for carrying items to and from work. If you are not on our mailing list, you can join our mailing list online.

Once we all begin to see ET as a condition that impacts millions of people all over the world, we will begin to realize the need for more research that will lead to new treatments, and hopefully someday, a way to prevent or cure it for everyone.

Speak up, speak out and let’s rock this year’s NETA Month!

 

New Year, New Opportunities

Patrick McCartney
Executive Director

As we kick off 2018, we are excited about the New Year and the opportunities to promote our mission to provide hope to the essential tremor (ET) community worldwide through awareness, education, support, and research.

The IETF is celebrating its 30th anniversary in 2018. We will kick off the celebration in March, which also happens to be National Essential Tremor Awareness month. There are a variety of ways for you to advocate for more ET awareness and education in your community. To learn more about how you can get involved here.

When we ask ET patients what they would like to see the IETF focus its efforts on, one subject comes up consistently: research to help find a dedicated treatment(s) for ET and, hopefully, someday a cure.

With the generous support of our donors,
we have been able to fund more than
$750,000 in ET research.

 

If you would like to learn more about the studies your donations have funded and the results they have achieved, you can find more information here.

Also, there are several clinical trials currently taking place that focus on ET-specific medications and wearable devices. If you are interested in participating in one of these trials check out the list of programs on the IETF website. You can also visit www.clinicaltrials.gov for easy access to free information on clinical studies for a wide range of conditions including ET.

Another great way to get involved is through a local support group. The IETF currently has more than 60 support groups around the world. We have a listing of all the supports groups on our website here. Or take part in our online support group through Facebook.

If you can’t find a support group in your area and Facebook isn’t your thing, we encourage you to consider starting a support group. We have all the tools to get you started and help you promote the meetings.

As always, we thank you for your support of the IETF and the ET community. The IETF has so many resources to share with patients, doctors, family members, and caregivers. We hope you will spread the word and help us continue to educate people on the most common movement disorder in the world.