ADA Accommodation and DBS Therapy Provide Support for Fred

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.

Fred’s Story

Fred was diagnosed with essential tremor (ET) at the age of 62. That was just two years ago, and yet he has had tremors since he was a teenager. His grandfather had ET it and his sister has it. He said they all have always just adapted the best they could.

Unlike many people afflicted with ET, Fred didn’t let it stop him from going out to dinner, even though he couldn’t get a spoon of corn or peas to his mouth without spilling them. He remembers going through the buffet line at his nephew’s wedding and struggling to serve himself because of his trembling hands. Though he admits that his handwriting has never been good, it finally became so illegible that even HE couldn’t read it.

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“Taking communion at church got harder and harder,” he recalled. “And fine detail work, such as holding very small screws, became impossible.”

Fred applied for “reasonable accommodation” at work, where he is a water treatment operator. Under the Americans with Disabilities Act (ADA), employers are required to provide “reasonable accommodations” to qualified employees with disabilities. It gave him a sense of relief to know others were aware of his condition and that they would provide accommodations to support him in his work.

Through the years, Fred said what helped him cope the most with his ET was his faith and becoming comfortable enough to accept his tremor. He also sought support through the IETF’s Essential Tremor Awareness Group on Facebook.

“When you hear what other people with ET are going through, it kind of relieves the frustration you are going through,” he said.

Medication has never provided him much relief, and like many others, Fred saw his ET worsen with age. He got to the point where he knew he had to do something to get relief. So he went online and did some research on surgical options, then visited with his neurologist about Deep Brain Stimulation (DBS) therapy. After learning he was a good candidate, he underwent surgery a year ago. Today he said he has his life back.

DBS therapy involves electrical stimulation to the brain through an electrode planted deep in the VIM (ventralis intermedius) nucleus of the brain called the thalamus. The implanted electrode is connected to a neurostimulator (battery) which provides the appropriate amount of electrical stimulation to control the tremor.

Today there are still times when Fred shakes a little, but not to the degree he did in the past. A small, but important thing he can do now, is serve his wife a cup of coffee.

“I’m excited to tell people about my ability to manage my tremor through DBS. There is hope out there,” he said.

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.

Go to a Doctor Who Listens and Believes in You

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.

NETA month 2019 LogoBy Lucy,

Gradual, insidious, and nasty are three words that I use to describe essential tremor (ET). I am an 84-year-old widow with ET everywhere. I am also hearing impaired and my speech is affected. I wanted to share my story to try to help others. I think the biggest misconception about ET is the general belief that it is a little condition for the aged, which is merely an inconvenience.

I am a retired junior high teacher and it was actually one of my students who made me pay attention to my shaky right hand. I knew I was shaking but I guess, like many others, I tried to ignore it. This was in the 1980s.

I asked my general practice doctor about my shaking. He just smiled and said, “You don’t have Parkinson’s disease.” But he didn’t give me a diagnosis or any treatment suggestions.

My tremor remained static for a few years. Then when I retired in 1995 it had moved to my right leg as well, but was not too noticeable. In fact, when my husband passed away in 1999, he was not aware of it. But, then it began to worsen.

I began doing some research online and disagreed with my doctor. I was sure I had essential tremor. He finally sent me to Akron Hospital and after some tests they said I was correct, but still no one suggested treatments, medications, or advice. I tried weighted eating utensils, but didn’t have much luck.

Soon shaking began in my arm and leg on my left side. I had given up my volunteer work with Hospice and concentrated on my hobbies: reading, tatting, needlework, and piano. I found myself withdrawing from any public functions and depression set in. The doctor gave me medications for depression and it helped some. Soon I quit cooking and got Meals on Wheels and used my microwave. My favorite coping method was spending time with my faithful companions, a cat and dog, and my Christian faith. My church still keeps in touch today.

In 2010 I just about wrecked my car when my arm spasmed. So I parked my car and called my kids. In a couple of months I was safely moved 130 miles away with my youngest daughter who is a trained caregiver. (My older daughter lives in Australia and my son in Texas.)

We have conducted some background research on our family and have found my niece is sure she has ET and my granddaughter, too. We think my father and sister did as well.

Since I moved I have a general practice doctor who believes me. He referred us to Wexner Medical Center (at the Ohio State University). I have officially been diagnosed with ET and almost had Deep Brain Stimulation surgery, but I decided not to. It just didn’t “feel” right.

I am on medication now but I don’t think anything is helping much. I am looking into the new MRI treatment since it is conducted nearby.

My advice to anyone who thinks they have essential tremor is to find a recognized specialist who listens and believes in you. Also, get involved in helping. I can’t do much now but when I die my brain goes to Yale for ET research.

P.S. It took me nearly four hours to type this.

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.

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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. 

Custom-Fitted Glove Can Help Manage Essential Tremor

From time to time we like to feature products or techniques that can help people manage or better cope with their essential tremor. Here is occupational therapist Krista Madere’s story of inventing the Readi-Steadi Glove System.

By Krista Madere, LOTR, CHT, Steadi, LLC

Krista Madere photo for blog

Passionate about my career as a registered occupational therapist and certified hand therapist for 21 years, I challenged myself to find a way to help clients gain control of their hand tremors in all aspects of daily living.

I personally watched my grandfather, a graphic artist in New York City, suffer from the debilitating effects of hand tremors, including social withdrawal. 

In the work that I do, I had seen many adaptive devices on the market, such as weighted utensils and modified pens. Most were created to help with a specific task, such as writing or eating, but not both. I wanted to recommend something to my patients that could be versatile enough to work for a variety of tasks.  

With all this in mind, I designed the Readi-Steadi® glove. This customized glove helps reduce both resting and action hand tremors, and has proven to reduce tremors by as much as 50%.  Customers have rated it as comfortable and easy to maintain. It weighs less than one pound, and does not restrict range of motion. Probably the best part: there are no side effects!  

Readi-Steadi® has already helped hundreds of people regain their confidence enjoying life again! One franchise owner from New Orleans, diagnosed with essential tremor, opted for a custom Readi-Steadi® system. Since then, he has mastered the art of time management and can control his hand and arm tremors without adverse side effects.  Excitedly, he no longer has to order drinks “with wiggle room” and can manage lightweight paper and plastic products when on the go.

Currently, I offer in person custom-fittings in the Baton Rouge, Louisiana clinic, but modern technology has allowed me the ability to offer online assessments and custom-fittings through the website, www.readi-steadi.com.

Most major insurances are accepted and individual policies and benefits are verified by our billing manager, Sheryl, prior to appointment and fabrication.  

Look for more information on our website or email or call me at: info@readi-steadi.com, 225-614-2631. I’m excited to get you started on the road to a better life by helping you manage your tremor.

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.

‘Tis the Season of Giving and Understanding the New Tax Laws

LET YOUR GIFT BE YOUR LEGACY

December is traditionally a time of giving. It’s the holiday season where gifts are exchanged and people reach out to help others, including organizations that do good in the world. Many charitable organizations receive their largest contributions in December.

While most charitable contributions are not motivated by tax write offs, this incentive has been engrained in society for the past 100 years. It was 1917 when charitable giving was approved as a tax deduction. The War Revenue Act of 1917 was adopted shortly after the US entered the war (World War I). The idea behind the act was to provide support for charities who otherwise might not survive the war.

Exactly 100 years later, in 2017, the Tax Cut Jobs Act was passed, changing the landscape for charitable giving. The new law reformed individual and corporate income tax. It increased the standard deduction and family tax credits, and eliminated personal exemptions, making it less beneficial to itemize deductions. What does all this mean if you are making charitable contributions? And how can you still give and save on your taxes?

Know the Rules
Understanding the ins and outs of the new tax laws can help you set goals. Most importantly, know what tax bracket you are in and the standard deduction amount. Here are the tax brackets for 2017 and 2018 so you can compare the changes.

Try Bunching
The new law doubled the standard tax deduction, which means fewer people will probably itemize their taxes. But, you can only make deductions if you itemize your taxes. Try to take advantage of itemizing by consolidating charitable donations. So instead of giving smaller amounts for two years in a row, give two or three year’s worth of donations in the same year so the gift is enough to deduct.

Consider a Donor-Advised Fund
A donor-advised fund is a charitable investment account established specifically to support a charitable organization you care about. It allows individuals to make a charitable contribution and receive an immediate tax deduction of up to 30%, then recommend grants from the fund over time. Direct donation of publicly traded securities is one of the most common ways to set up this type of fund.

Know the Value of Your Gifts
Most people give to a cause or charity because they believe in the purpose and the mission and want to be a part of it. Don’t lose sight of this. The gifts you give may be deductible in a given year, but their benefits can be life-changing for the cause you are supporting. Imagine knowing that because of you and your support, research was conducted that led to a cure for essential tremor. Let your gift be your legacy.

Learn More
Everyone’s personal finances are different and tax laws can be complicated. For more information check with your financial advisor or tax consultant to create a plan that works best for you.