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.

8 thoughts on “Shine a Light on Essential Tremor

    • Yes, please feel free to share it with anyone you know. We encourage it. Most people who follow us on social media have essential tremor, but there are also many medical partners, caregivers and others. We also create a certain number of paid posts that go out to people outside this group. So be assured we are trying our best! Thank you for your comment.

  1. I am the oldest member of a family of nine and only one doesn’t have a tremor.
    Our Mother had it. I had DBS in 2005 . The others did not although one is considering it. She suffers with rls and she’s got other similar things effecting her.
    I was under the impression that 50% of the children would have it. I have two boys. One of them has ET. Also his daughter has it. So we’re a family of ET”

  2. My name is Debbie I’m 56 and was diagnosed with ET in 2016. I’ve come to except my illness and just give in. I’ve tried hiding my tremors but it seems when I do they come out more. There are days I hurt so bad, my muscles tense up to were I can’t walk at times but I won’t give up. I’m blessed to have a supportive fiancé, daughter, son in law as well as other family members and friends.

    • Thank you for sharing your story, Debbie. We often hear from others that nervousness or worry about hiding their tremors makes them worse so you are not alone. It’s wonderful that you have a supportive family and supportive friends.

    • Debbie, seems it is so natural to try to hide tremors, I experience the same the tremor becomes worse if I concentrate on it as well. I decided I’m shakey and I just roll with it. My muscle’s tense up so bad at times as well I can see tremors under my skin . When tremors progressed a neurologist prescribed Pramipexole & propranolol for ET & RLS has been a tremendous help. Avoiding caffeine is a must for me . Nope don’t give up!

  3. I have had 80 since I was 14 in my hands. I also have found when you try to hide it it makes it worse. I run a support group but I have never heard of anyone stating that essential tremor hurts. Mine never has.

  4. Thanks a Kris…some days are better than others. My Mom noticed it when I
    Was 49. . A very alert Dr. sent me to a neurologist who prescribed primidon.
    It has given me relief.

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