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.
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.”
I have a daughter who was diagnosed at 16. She is now 28. She has avoided looking into ET until recently because I think she is scared. The past couple of years they have progressed slightly. They are in her hands and on bad days she says her whole body feels like a live wire. She has become depressed and put on weight. No one in our family has them so trying to help her is a hard task. How would you recommend helping her to understand and accept it.
There is an “Essential Tremor Young Adults” group on Facebook. It is a closed group so there is privacy for those who join. Here is the link:https://www.facebook.com/groups/155789565127764/
We have scholarships we offer to young people who have essential tremor. Have her look at our website to read about these young people so she doesn’t feel so alone. She can click on the names of the most recent recipients or look at past recipients to hear their stories. Here is a link to those: https://www.essentialtremor.org/about-the-ietf/scholarships/. I know she is 28 now and not a teen, but this will help her to see that many people are diagnosed in their teens just as she was.
We just posted this blog on our Tremor Talk blog site written by Rachel who is also 28. She may want to make a connection with Rachel through that blog post. Rachel loves to connect with people who have ET.
Please reach back out to us if none of these things help. She is NOT alone, please assure her of that.
Colleen,
This is Rachel’s mom. If you want to contact me directly, you can email me at keeyz88@aol.com or through Rachel’s blog.
I too thought that no one in my family had ET. Wrong. If you look hard enough, you may find someone. My mom lived til 97 and it wasn’t until her last years that I noticed the shaking in her hands. My first cousins (my mom’s sister’s kids) have it. They just never mentioned it because everything in my family is a “secret.”
I would be happy to share my experiences with you about being a mom to a child with ET.
Every day I tell Rachel that there is so much in the world that she CAN do. So too CAN your daughter.
I was diagonsed with ET when i was 19, but noticeably have had it since i was a young teen. As far as we know, no one else in my family has ET, but there are cases of Parkinson’s disease. I was in the Army until i broke my hip from 2008-2009 from balance issues. I thought this disease was going to ruin my life and neber be able to have a “real job” in my terms if my dream career field. But i am 28 now and im a swim instructor / life guard and I’ve done Corrections for almost 2 years and i do my jobs exceedingly well. My coworkers joke about my tremors and help hide my struggles towards inmates when they know im struggling.
Having emotional support has been the best thing for me to get throughthe toughest thing I’ve ever dealt with! Raising children i dread and pray my babies never have to deal with this and my own daughter who is 8 now is such a vig help towards me!
I also have a son who is 3 now wjo always keeps me on my toes and whwn i lose my balance he tries to help me up!
I went to University of West Virginia Medical Center & did MRI guided focused
Ultrasound procedure with 99% success.My right hand is normal with almost
no tremors now.I have been suffering with ET for last 50 years.Trust me! Am very
happy & satisfied with this procedure & recommend it to ET patients.Medicare
cover my most of the cost.It is amazing & satisfying.That’s all.