Her Acceptance of ET Built Her Confidence and Brought Empowerment

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.

Rachel’s Story.

Essential tremor (ET) is not just a condition of the elderly. Rachel is proof of that. She is only 28 years old and she has had ET since she was five.

Young but wise beyond her years, Rachel has come to terms with her ET and that acceptance has helped her.

“If you don’t accept yourself as a person with a disability and you just are negative about it and say, ‘this is it. I can’t do anything,’ then you are letting life and time pass you by,” she said. “But if you actually accept it and have that confidence and use it to your ability as a way of empowerment, then it’s something that makes life and time a lot easier.”

Rachel has made it a priority to raise awareness about ET. As a communication major in college, she used ET as her platform when she gave speeches and produced videos. She captured ET through photography and worked on individual and group projects. She saw it as an opportunity to let people know that ET exists and explained the impact it has on people of all ages. She even agreed to be the subject of a documentary film her friend Debra produced. Titled, ShakeItUp! it can still be viewed online today through YouTube.

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But, Rachel didn’t stop there. She went on to reach out to people all over the world through Facebook support groups, and maintains a presence in more than 30 groups today. She started a blog where she wrote about ET, and her social media posts on Facebook, Instagram and Twitter frequently mentioned her challenges and struggles. More than anything, she focused on helping people understand what ET is.

“People know what Parkinson’s disease is so I use that as a point of reference to say, if you know what a resting tremor is with Parkinson’s, then think about the reverse of that. ET is the action tremor,” she explained.

Rachel became co-leader of an essential tremor support group in her community and then took the reins as leader when her co-leader moved.

She estimates she has reached over a thousand people through her awareness efforts.

“I try to take any opportunity I can to be able to share my story,” Rachel said. “It also helps me. It’s a form of talk therapy and you never know who you are reaching.”

My Shaking Made Me Feel Like I Was ‘Going Nuts!’

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 Jody,

My tremors started when I was 21. My daughter was almost one-year-old when I noticed my head feeling like it was shaking inside but not noticeable to others. I went to my regular doctor and said, “I think I’m going nuts… I feel my head shaking and it’s not stopping.”

My doctor sent me to a neurologist who tested me and I got the diagnosis of tremors. At that time it was just my head shaking; but it went from not noticeable to others to very noticeable within six months. I was prescribed an anti-seizure medication.

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Then I also started doing my own research on essential tremor. My mother-in-law saw an older lady in the hospital waiting room one day and noticed she shook just like me. She started talking to her and found out her doctor prescribed Botox injections. So I made an appointment with that doctor who diagnosed me with both essential tremor and muscular dystonia. She prescribed many different medications including muscle relaxers, and most of the medications had bad side effects.

After a few years I started Myobloc injections. Those worked for about nine years. I then went to the Mayo Clinic to explore the option of DBS surgery but decided against it.

I went a few years without seeing a doctor then found another specialist. We again started the process of trying to find a medication that would help relieve my tremors. Today I have exhausted all of the medications out there that they use to treat tremors.

“Over the 20 years of me having this I now have tremors throughout my whole body. My head shakes, shoulders, trunk down to my legs. I do not stop shaking at all.”

I am now doing Botox under an orthopedic specialist. I also see a chiropractor and use CBD oil when the Botox runs out of my system.

I work in an office setting full time and have a cleaning business on the side so I work seven days a week. In my office job we have changed a few things to help me get along easier. I have been at this job for 22 years so they have seen the tremors progress with me as the years have gone by. I use weighted pens and pencils. I have a standing desk now so I can move around as much as I need to. I feel better the more I can move. If I’m not working and just laying around at home I hurt – my muscles hurt, my body hurts. But, I can still move. Some days are harder than others. Writing is getting harder.

I’m amazed at how many people have had this condition their whole life. I sometimes have to remind myself of the people who can’t work or can’t write at all because of their tremors. Mine are bad but others have them much worse than me.

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.

Comprehensive Meeting Focuses on Tremor Disorders

By Shari Finsilver
IETF Board Vice President

Calling all tremor patients … I have some great news. We are in very good hands!

I had the privilege of attending the 1st International Tremor Congress in New York City on May 11 & 12. I must say, I was totally blown away . . . by the level of research that is currently being conducted around the world, by the wide age range represented, and by the organizational excellence of the entire meeting.

The goals of the conference were:

  • Formulate an evidence-based approach to optimize the treatment for tremor disorders.
  • Develop evidence-based scientific knowledge for the future clinical study design in tremor disorders.
  • Describe the up-do-date clinical diagnosis and treatment in each tremor disorder.
  • Indicate the cutting-edge scientific discovery for tremor, and also current tremor therapy development.

Among the approximately 200 people attending this inaugural conference, there were the experts present . . . those who have created the science of tremor research, whose names grace hundreds of medical journal articles, as well as the textbooks used by the numerous students whom they have all mentored. Then there was the next generation of tremor researchers . . . those who are conducting novel, original studies, leading the way with their brilliant ideas. Also present were students including students in the fields of neurology, movement disorders, public health, etc. They were there to learn, collaborate, and be challenged to continue this very important work. Since much of the successful research is a collaboration between academia and industry, many of those industry representatives were also present, ready to learn with the rest of us.

The first meeting day was devoted to science. This included research projects involving the circuitry of the brain, a focus on Purkinje cells, on climbing fiber synapses, and on neuroimaging, just to name a few areas of interest. The second day focused on the current and emerging therapies, ranging from medications under development for tremor control, to surgical interventions (both invasive and non-invasive,) to wearable devices that can improve tremor control.

The IETF was proud to be one of the many sponsors of this first Tremor Congress. A huge thank-you goes out to the course directors and their committee:  Sheng-Han Kuo, M.D. (Assistant Professor of Neurology, Columbia University), Elan D. Louis, M.D., M.S. (Professor of Neurology and of Epidemiology: Chief, Division of Movement Disorders, Yale University), and Ming-Kai Pan, M.D., Ph.D. (Assistant Professor of Medical Research, National Taiwan University). And, also to the faculty, whose presentations were outstanding.

Raising Awareness About ET and the IETF

Patrick McCartney
Executive Director

I recently attended the 70th American Academy of Neurology (AAN) Conference in Los Angeles, CA along with our board president Dr. Kelly Lyons. This annual conference offered more than 300 top-quality programs covering the spectrum of neurology; exciting networking opportunities; and expanded Experiential Learning Areas that allow attendees to interact, explore, and learn outside of the classroom. This year’s announced attendance was more than 14,000.

AAN offers non-profits free booth space and the IETF has exhibited at the conference for several years. This is a great opportunity for us to raise awareness and educate doctors, medical students, and pharmaceutical and medical device companies about the resources available on essential tremor from the IETF.

I’m always amazed at how many doctors and other exhibitors I talk with at these conference who either have ET or have family members or friends with ET. Talking to these people affirms why we attend these type of conferences because most of them have never heard of the IETF and they’re excited to hear there is a reliable source for accurate and objective information on ET.

Making Connections 
This conference also gave me a chance to catch up with several of our IETF Medical Advisory Board members. I enjoyed seeing Dr. Elan Louis from Yale University School of Medicine, Dr. Mark Hallett, a senior investigator with NINDS and Dr. Keith Coffman from Children’s Mercy Hospital right here in our backyard in Kansas City.

I also had the opportunity to meet with some of our partners who work (or are working on) a variety of ET specific medications or medical devices for the ET community. I was able to spend time with folks from Liftware, Abbott, Cavion Pharmaceutical, Boston Scientific and Medtronic. I also met with one of our newest partners the Alliance for Patient Access.

Another Advocacy Opportunity
In October, we will attend the American Academy of Family Physicians Annual Meeting in New Orleans. We think it’s important to attend this meeting to raise awareness with family physicians who quite often are the first doctors to diagnose ET in many patients. Again, almost all the doctors I talk with at this meeting see ET patients, but have no idea the IETF exists.

I know sometimes it seems like there is nothing new on the horizon to help ET patients. After attending AAN I’m excited about the new projects being worked on including ET specific medications, improvements in DBS and Focused Ultrasound treatments, and new medical devices that will help improve the quality of life for ET patients around the world.

Choosing the Right Doctor: IETF ET Specialist Directory

Selecting the right doctor for you isn’t always easy, and it shouldn’t be. When you put your life and health in someone else’s care, you should feel confident that this individual has the right blend of qualifications, skills and personality traits to give you the care you need. But shopping for a doctor can be overwhelming. The International Essential Tremor Foundation can help make the process easier. The IETF has an international directory of movement disorders neurologists and ET specialists who are credible, professional physicians approved by the IETF Medical Advisory Board.

Arshia Sadreddin webA highlighted example of an expert physician found through the directory is Dr. Arshia Sadreddin. Dr. Sadreddin recently relocated her practice from Barrow Neurological Institute in Phoenix to California Pacific Medical Center in San Francisco. Dr. Sadreddin is a board certified neurologist who completed her medical education at Ross University School of Medicine and her internship, residency and fellowship at St. Joseph’s Hospital & Medical Center in Phoenix, AZ. She is a member of the IETF Medical Advisory Board. Dr. Sadreddin specializes in the treatment of patients with Parkinson’s disease, Huntington’s Disease, various tremors including essential tremor, dystonia, and facial spasms. Her philosophy of care is proactivity and partnership in care through human kindness.

To find a highly-skilled ET specialist like Dr. Sadreddin in your community, visit the IETF website. Make your association with your doctor a confident and comfortable relationship worth the extra effort.

Contact Info:
Arshia Sadreddin, MD
Movement Disorders Specialist
California Pacific Medical Center-Pacific campus
2100 Webster St. Suite 115
San Francisco, CA 94115
Telephone: (415) 600-7886

Introducing a new, free e-book from ET experts

Ebook-Cover-2014-for-webThe IETF is excited to offer the new, e-book, Essential Tremor: What the Experts Say, exclusively available to annual donors who make a contribution of $30 or more. Through this comprehensive collection of informative articles, you’ll gain insight and a better understanding of essential tremor through the knowledge of the world’s finest movement disorders specialists and experts.

Now in its third edition, the e-book features over 80 articles filled with invaluable information for you to reference time and time again. The e-book is compatible with any e-Reader as well as available for download in PDF format.

The IETF thanks the many physicians, health care providers, and other individuals that contributed time and effort to make these articles possible. These people have contributed greatly to the success of the IETF over the years.

Make your annual donation today and receive the new, e-book, Essential Tremor: What the Experts Say as our way of saying thank you for your contribution.

The IETF visits Ohio

Cleveland MarriottJoin me, Dr. Walter and Dr. Miller on Saturday morning, April 5, 2014 from 9:30 to 11:30 a.m. at the Cleveland Airport Marriott to learn more about essential tremor. We’ll discuss the diagnosis process for ET, what treatments are currently available, and what is going on in ET research. Plus, we’ll have a special presentation on occupational therapy and assistive devices.

This is one ET presentation you are not going to want to miss. And it’s free to everyone who wants to learn more, so bring your friends and family along. Just visit www.essentialtremor.org/seminars for registration information and driving directions. I look forward to meeting you!

Head Snap – Promising New Finding

finger test

Scientists recently released a study that could be a useful aid in diagnosing essential tremor.

Researchers at Columbia University found 20% of essential tremor patients in the study exhibited a head snap, which is a jerking motion of the head while engaging in the finger-nose-finger maneuver. In this maneuver, people touch their nose with their finger and then try to touch the examiner’s finger in an alternating fashion to test for tremor.

The study also documented the prevalence of head snap to Parkinson’s disease patients, and they found that none of these patients exhibited head snap.

Because so many ET patients are misdiagnosed (approximately 30-50%), many as having Parkinson’s, researchers hope attention to head snap will lead to more accurate diagnosis of essential tremor.

Read more here.

 

Joy Schaaf in the News!

Recently we got this great news from one of our most supportive voices and ardent supporter – Joy Schaaf. We congratulate Joy on her great video and all the support she has provided in the last two years. For more about Joy visit, http://www.essentialtremor.org/read.asp?docid=907 and her story appears 3/4 the way down the page.

Dear IETF and Friends,
Joy Schaaf is at it again. Spreading awareness through a skit. Ohio has a 4-H Health and Safety Skit Competition. Joy and her sister Hope wrote a skit about her essential tremors. They won at county level and then again at regional level. Tomorrow they will be attending the Ohio State Fair for the final round in the competition. Last year it was taped and put on the internet. We are hoping it will be taped again. If she wins and if it is taped, we will let you know where you can watch it. Information from your website was very helpful in the writing of this skit and all information obtained was sited correctly.
Sincerely,
Teresa Schaaf

They didn’t win, but they did an excellent job! You can watch the video online at the following link: http://www.ohiochannel.org/medialibrary/Media.aspx?fileId=139803. The skit “Essential Tremors” is halfway through all the videos at 47:45 min. Check it out!
Teresa