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.

2 thoughts on “I Do Everything I Can and Try Not to Let My ET Get Me Down

  1. I too have ET and my darling grandson says I have dancing hands!
    It’s absolutely a soul destroying condition. My mother had ant and so did one of aunts. So it’s definately in the family. Along with my termore I also have T1 diabetes.
    The tremor got worse as I goat older, stress exacerbates it and I go to great lengths to avoid anysort of confrontation.
    I’ve had it since I was a child but it was when I could no longer write my name, write anything at all, could not feed myself, carry full cups, dropped plates, cups, anything at all that I sought help. Typing was a nightmare trying to control the mouse and hit the right keys.
    I was given every drug you can think of for this condition but nothing worked. So finally I just had to put up with it. It was a chance meeting I had with a neuro surgeon who put me in contact with my DBS Professor Silburn who explained that the condition would worsen rapidly if I did not seek further help.
    I decided with my husband to have Deep Brain Stimulation last April 2018.
    Apart from a couple of hiccups and lots of reprogramming 12 months now and I am almost tremor free. And what’s more, I have my life back!
    My DBS team at Neurosciences Qld are the most caring, understanding, helpful and kind medical team I could ever have wish for.
    Yes, it cost me an arm and a leg but has been so worth it. I am in their care for the rest of my life with checkups every three months and access to my DBS nurses whenever I need them.
    I am so blessed to have this team in my life and I will be eternally grateful.

  2. I had EST IN 1973 with a head TREMOR. Am now, in 2019, full body – both sides, with a speech difficulty. My Neurologist is projecting the ultrasound procedure for me. I look for the gift of each day, and am looking forward to this gift.

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