March is National Essential Tremor Awareness Month

Hi, my name is Evie and I have essential tremors. I am part of the 5% of people age(s) 40 to 60 to have ET. March is National Essential Tremor Awareness Month – a time to shine a light on Essential tremor and the impact it has on millions of people throughout the world.

You may be asking what essential tremors are, well not too long ago I was asking the same thing. The short of it is, essential tremor is a nervous system (neurological) disorder that causes involuntary and rhythmic shaking. It can affect almost any part of your body, but the trembling occurs most often in your hands — especially when you do simple tasks, such as drinking from a glass or tying shoelaces. While it is not common to have essential tremors before the age of 40 you can have this as a baby or young adult. Essential tremor is usually not a dangerous condition, but it typically worsens over time and can be severe in some people. Other conditions don’t cause essential tremor, although essential tremor is sometimes confused with Parkinson’s disease.

You also may be asking how you get Essential Tremors. About half of essential tremor cases appear to result from a genetic mutation, which makes this an inherited disorder. Those that do not have a genetic mutation the cause of ET is unknown. If you have a parent with a genetic mutation for essential tremor, you have a 50 percent chance of developing the disorder yourself

My Diagnoses

Since I was the age of 20, I have had a small tremor, or something similar to what I do now. I was terrified I had early onset Parkinson’s, as that is the cause of my Papaw’s passing. Parkinson’s and essential tremors may look alike at the beginning but they aren’t connected. Essential tremors do not affect your organs. However, in a second population-based study of elders, essential tremor (ET) was associated with increased odds of dementia. Parkinson’s is not hereditary and ET is. Parkinson’s causes death and essential tremors do not. For me ET began as something that happened in times of stress, and as I got older it developed more and more. From talking to others and my General doctor, I found out some of my issues are all part of the ET. Although you can’t find any information. Thankfully we are in the world of the internet and there are groups for everything. Thankfully also for online communities that have helped me know what was happening to me after the diagnosis.

I don’t really know about my father’s side of the family but I do know my mother’s father’s family all had what they called “palsy” which was just a word they picked to describe what they had. I am to believe that in fact all my Papaws, brothers, sisters, and mother had ET. While my Papaw did get Parkinson’s in the end around 70, the shaking began much younger around 40.

I remember my great Aunt and how she had to sit a certain way to hold her hand still. I would hear stories about my great Grandmother and how she was so careful to not do things in public she had a hard time doing. But mostly I remember my Papaw. I always played with my papaw so as you can imagine when he would not be my “baby” at the dinner table and let me feed him, I did not understand why. He would always say one day you will have to feed me but that isn’t today. Before his mind went with the Parkinson’s I did have to feed him and he said to me once, “See I told you, you would have to do this one day”. Apparently, he knew because he had to do the same with his mother.

For me, Essential Tremors has been more and more frustrating. I do not have a steady hand anymore. When I have used my hands a good amount I become less and less steady. Like for example putting on my make up can be considered strenuous at times. What I once could do in a short amount of time now takes me longer if I can do it at all. In the past year I can’t tell you the number of times I have just wiped all my makeup off and said forget it. A steady hand is something we don’t think about but is important. I love to color, write, draw and paint. All things that I don’t do too much because my hands give out. If I can do a little one day and come back the next it is ok. Other ways it affects my daily life is I basically have the worst time taking photos and videos. I just can’t hold the phone still. Late at night after a long day, my phone will fly right out of my hands as I am trying to watch youtube on my phone or return a text or email. ET has also shown up in body shakes and “jumps” – it’s like my body had these little jump moments that are so frustrating and semi painful at times. I live in fear that my memory will start to get worse. I already experience not being able to say words and forgetting things I should know.

From what I can find out is ET presents in many very different ways. You can have it for long periods and it stays very controllable or you can have it be very noticeable. Right now, mine isn’t noticeable unless you’re in bed with me at night trying to use my phone or watching me work on the computer and getting annoyed at typing weird words.

I know so many of us have diagnoses that scare us but can’t do anything about it due to it being hereditary. Some of us have diagnoses that people do not know a lot about. The thing I keep telling myself is, I’m not my diagnosis. I am who I am. I will fight and push through. I will rise up. I would like to encourage you to put your diagnoses in the comments and let’s join together to know more so we can care more.