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

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

By Elissa,

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

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

NETA month 2019 Logo

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

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

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

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

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

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

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

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

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

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

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.

NETA month 2019 Logo

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.”

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.

Educating Family Physicians about ET and the IETF

By Patrick McCartney,
IETF Executive Director

One of the pillars of the International Essential Tremor Foundation’s mission statement is “to provide hope to the essential tremor (ET) community worldwide through awareness.”

As we all know one of the biggest challenges we face is raising awareness for ET. This is a daily task for our staff. We use a variety of channels including social media, printed materials, and talking with patients, caregivers, and family members every day on the phone who have questions about this disorder.

Another way we try to raise awareness is by attending national conferences and sharing a variety of information on ET. October 10 through 12 I attended the American Academy of Family Physicians Family Medical Experience in New Orleans, LA. There were more than 5,000 family doctors attending the event. This is the third year we have attended and it’s a great opportunity to share with family doctors the resources the IETF has available for them and their patients.

I shared our Patient Handbook, IETF brochure, ET vs. Parkinson’s fact sheet, medical alert cards, IETF pens, and Tremor Talk magazines with them. The ET vs. Parkinson’s fact sheets were so popular I ran out the second day and had to make more copies at the hotel for the last day of the show.

A couple of takeaways from this conference:

  • Every doctor I talked with had treated ET patients, but not one of them was AAFP Conference 2018aware of the IETF.
  • Several of the doctors I talked with have ET or have family members or friends who have it and were excited to see the resources we have to share.
  • Everyone I spoke with said they would share our information and/or direct their patients, friends, or family members with ET to the IETF either through our website or our toll-free phone number.

I would encourage you, as I encouraged these doctors, to be advocates for ET and the IETF in your community. There are a lot of stereotypes and stigmas associated with ET. Don’t let them prevent you from sharing your story and explaining the daily challenges you face because of ET. And let others with ET know they are not alone.  There are IETF support groups all around the country. You can find a listing of them on our website.  If there is not one in your area consider starting one or join our online support group on Facebook (Essential Tremor Awareness Group).

We appreciate your support and if you have any questions please don’t hesitate to contact the IETF at 1-888-387-3667 or info@essentialtremor.org.

‘It’s the Man Who Overcomes Adversity that is the True Champion’

Each semester, the International Essential Tremor Foundation presents four scholarships to students with essential tremor. The scholarships represent hope for the future, and provide support to these students during a pivotal time in their lives. As part of the scholarship application process, each applicant is asked to write an essay that answers the question, “How has essential tremor affected my life?” The following essay is from one of our fall 2018 scholarship recipients

 

By Robbie Holder,
Georgia Southern University

I do not remember a time when my hands did not noticeably shake. I was diagnosed with essential tremor (ET) at the early age of 14. While I recognized I was not the only Photo of Robert Holder, 2018 IETF Scholarship Recipientperson to experience tremors of this nature, I didn’t know anyone my age who suffered from this diagnosis. My other has ET and her grandmother suffered from it also; therefore, my diagnosis was not unexpected as it is hereditary. Since that time, I have reconciled myself with the knowledge that ET isn’t curable. I have found peace with the fact that I will always have a tremor. I haven’t used my diagnosis as an excuse to quit or avoid certain tasks, but have chosen to work harder in order to succeed.

My mother is an artist and while having a tremor makes it more difficult for her to create art, she doesn’t let it stop her from doing what she loves. She has to intensely focus on the task at hand. She has made adjustments to accomplish daily tasks. Like my mom, I have learned to adapt in order to accomplish tasks that come easily for others. I struggle to open packets, eat with a spoon, peel shrimp, button clothes, brush my teeth and insert contacts. Utilizing both hands, I have more control of my movements.

ET can be frustrating. I enjoy physical activities and working with my hands. My goal is to study exercise science. ET makes it difficult, but not impossible.

I have not let my ET keep me from doing the things I love. I truly believe it’s the little things in life that make a difference. With my family’s help, I built a Little Pantry for my community during my senior year in high school and I continue to run it today. Those in need obtain food and household items without the stigma of being seen as helpless. Others in the community can make a difference by restocking the pantry. Despite the frustrations I encountered during the pantry’s construction, I feel that I have made a difference and continue to do so.

I have been inspired by a quote that I keep close to my heart. It’s by Jock Ewing:

“Any man can win when things go his way. It’s the man who overcomes adversity that is the true champion.”

The challenges I face daily have made an impact on my life. I have to worker harder, persevere when faced with challenges, and find strength from within. These challenges have made me resilient, hard-working and confident. I choose to be strong. I have a desire to succeed and a strong work ethic. I finish what I start and I don’t let anything get in my way.

I know ET will always be a part of my life, but it will not define who I am. I choose to overcome.

*********

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

 

 

High School Student Develops App to Detect Parkinson’s and ET

Quote

High school student Erin Smith has developed an app that helps to diagnose Parkinson’s disease and possibly other neurological conditions through facial recognition. She serves as an example of how young people are stepping up to invest themselves in making a difference in the lives of others through their ingenuity and motivation. Here is her story.

By Erin Smith.
Senior at Shawnee Mission West High School
Overland Park, Kansas

About two years ago, I was watching a video by the Michael J. Fox Foundation when I noticed that whenever Michael J. Fox or another Parkinson’s disease patient would smile or laugh, it came off as emotionally distant. Further, as I talked to Parkinson’s caretakers and clinicians, they reported similar observations in their loved ones years before diagnosis. As I read medical studies, I found that the often overlooked sections of the brain that undergo the earliest changes in Parkinson’s patients are the same parts involved in the formation of facial expressions.

My mind instantly went back to a TV show I had watched as a child called Lie to Me,  where a deception expert would solve crimes by studying facial expressions to determine if people were lying. I wondered if facial expressions could have similar health care implications and provide external manifestations of neurological pathology. 

FacePrint App is Born
I then launched a study in partnership with the Michael J. Fox Foundation Trial Finder to expand my research on a national level. Using the data I collected, I developed FacePrint, a tool to diagnose and monitor Parkinson’s disease using the early stage facial muscle indicators that I identified. FacePrint provides an inexpensive, remote tool for early stage Parkinson’s disease, requiring only a computer and webcam. Further, FacePrint is compatible with facial recognition used by Snapchat and Facebook, creating a selfie that could save your life.

Differentiating Between Parkinson’s and ET
However, after developing FacePrint, I quickly began to notice distinct facial movement differences in patients with other neurological diseases. I started formulating the idea that facial behavioral biomarkers could non-invasively differentiate between Parkinson’s disease and Essential Tremor patients. My new mission has become to create a robust, differential diagnostic and monitoring tool for Parkinson’s disease and Essential Tremor patients. It is my hope that developing accurate diagnostic and monitoring systems for these two diseases will lead to improved, earlier treatment options and ultimately a cure.

Ridding the World of Neurological Disorders
Beyond my goals for my research from a medical perspective, I also hope to create a source of hope.

I firmly believe that change occurs on an individual level. It is one person doing one thing different one time. It is one person caring about one topic and doing everything that he or she can to make a difference in that area. It is one person taking one step forward one time.

I believe that the journey towards a cure for Essential Tremor and Parkinson’s disease will follow the same pattern. However, while change occurs on an individual basis, impact occurs when we all come together to leverage that change. My work is just one piece of the larger puzzle. We must all come together and put the pieces together. It will take everyone devoting their time, efforts, and stories to lead to a day when Parkinson’s disease and Essential Tremor are cured conditions. Although it is easy to become discouraged, my research has filled me with a deep sense of optimism for our future. There are researchers, patients, caretakers, clinicians, and everyday citizens around the world who are making remarkable progress and strides in this field. We are not marching alone. Rather, we are marching hand-in-hand, striving towards the day when our collective impact will create a world without neurological disorders.

YOU CAN PARTICIPATE IN ERIN’S STUDY

Erin is expanding her original research to include essential tremor and persons with no neurological disorders to determine if this test (her app) can easily differentiate between the two, possibly saving patients years of misdiagnosis. The study takes about 10-15 minutes and requires a computer with a webcam. It typically works best on Chrome, which can be easily downloaded online if not already installed (see link below). If you have ET or Parkinson’s Disease please take this test and please encourage your friends and family members without either disease to participate as well.

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.

 

 

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.

 

 

Raising Awareness Year Round

General-Awareness-YR-Facebook-CoverNational Essential Tremor Awareness Month may be over, but efforts to raise awareness don’t have to end on March 31. What if we didn’t just commit ourselves to raising awareness one month out of the year? What if we made a conscious effort to connect throughout the year with our communities to raise awareness about ET? Every day is a great day to increase awareness in your community! ET Awareness can be described as anything you do to help people understand what ET is, why the International Essential Tremor Foundation exists and how we can connect with others to fund more research to find better treatment options and a cure. Our efforts combined throughout the year to raise awareness could help so many people with ET live better lives, find treatment options that work for them and provide support for one another.

Raising awareness throughout the year can be a small or big project, the important part is that we are all keeping ET in the forefront of conversations and increasing the number of connections to the IETF mission. Raising awareness can be as simple as committing your office to hosting a “Jeans Day” each Friday with proceeds benefiting the IETF or distributing IETF materials to your local neurologist or physician. The possibilities are endless. Below are easy examples of how you can continue to raise awareness in your community beyond the month of March.

  • Share our posts on Facebook, Twitter and Google + with friends.
  • Post ET facts and hand out free IETF awareness posters around school, local businesses and your office to educate others about ET.
  • Start a Support Group in your area.
  • Computer Screen Savers: Add the IETF logo to your screen saver and send it to your friends and everyone in your family! Or simply create a text screen saver on your own computer that others will see when you’re away from your desk.
  • Share your story and get an article in your local paper: Contact your local newspaper about media outreach opportunities. You can also include information about how people can contribute.
  • Meet the Press: Does your company distribute a newsletter? Does your company have intra-office email? Take advantage of these…it’s a perfect way to get the word out about ET.
  • Universities & Colleges: Contact your local schools and ask if you can put an advertisement in their school newsletter to create greater awareness. Some organizations may even invite you to make a short presentation.
  • Write to your local politicians: You supported them; don’t you think they should support you?

Have you had a successful awareness event? Connect with us to share your story. Your ideas could inspire others to get involved in creating more awareness for ET. ET awareness can happen 365 days a year. Start today!