Oh Lord, Please Take This Tremor from Me!

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 and share your comments and words of encouragement.

By Anna,

I first noticed I had a head tremor when I was approximately 10 years old. I remember people would ask me why I was shaking and I really didn’t know. And at that age, I didn’t seem to care that much as it didn’t happen that often. I actually blamed it on a neighbor pushing me out of a tree when I was around that age. I thought I had jolted something out of position. My dad didn’t have his tremor yet as it only came on for him when he was well into his 60s.

NETA month 2019 Logo

As I got older and into high school, the tremors seemed much more frequent. But as long as I kept moving (didn’t stay still) they weren’t noticeable. So I began vigorously shaking my leg when I sat still, especially in school. I remember my teacher asking my mom if I did drugs. My mom just said “she’s a bit anxious” which also was true. The hardest part was feeling out of control and not really knowing why.

After I graduated and found out I actually had essential tremor I decided to try some different medications to see if I could calm it a bit. I tried gabapentin, topiramate, propranolol and primidone but none of them were worth the side effects they brought on. I even tried Botox injections in my neck but after all the pain and the money, I felt no relief. I started taking antidepressants in my early 30s which helped me deal with the tremors a bit better than without them.

Into my 40s, I found out about Deep Brain Stimulation (DBS) surgery and from then on I was on a mission. You see, I was starting to become an introvert. I hated going anywhere where I had to sit still. I had three beautiful children and worked full time at a bank and as long as I could move a bit I could camouflage the shaking. Honestly, I think it was way more pronounced in my own thoughts than it actually was outwardly. But that didn’t matter. To me, I was a freak and I couldn’t stand the thought of people looking at me and either wondering what was wrong or feeling sorry for me. It was really hard to concentrate or focus.

“I can’t count the number of times people asked me if I was cold and I would say yes just because I didn’t want to attempt the ET story and have them feel bad for asking.”

Whenever my bank manager called a meeting, which was almost daily, I literally felt sick to my stomach because I WAS IN THE DREADFUL SITUATION OF TRYING TO SIT STILL AGAIN. And it was actually physically painful because the more I tried to sit still, the harder it was. It was like an internal/external battlefield and all I wanted to do was fall asleep and be still.

The dentist was just as bad or worse. And the time I had a small precancerous spot removed from my forehead was absolutely horrifying because the nurse could not hold me still while the doctor cut me. I even stopped going to church, which I only started in my 30s, but was enjoying. I do remember praying, “Oh Lord, please take this tremor from me!”

Well, in 2006 my prayers were answered! I got my double Deep Brain Stimulation (DBS) surgery. It worked! I was over the moon. I had to get my chest opened again in 2011 and 2016 to get new batteries, which as fine. In 2018, I needed new batteries again and I noticed my tremor coming back quite a bit. From 2006 until 2016 whenever I noticed my tremor creeping back, I would just turn up my stimulators and I was pretty much still again. But the downfall in turning them up was that the wires implanted in my brain were so close to my speech center that every time I turned them up it would be a little harder to talk. Unfortunately now, 13 years later, I sound like I have a speech impediment and it is a chore to talk. But don’t get me wrong, I will NEVER regret the surgery and I will take the speech issue over the tremors any day.

Now I’m hoping and praying to get the new focused ultrasound surgery. I am always positively searching for a better quality of life. So my advice to anyone else suffering with ET is: do what feels best for you. The DBS was an absolute godsend for me and gave me 12-13 years and it’s still not bad, but if the new surgery can help my speech and I am eligible, that will be my next quest. I want to live my best life.

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.