Life and Living – Me and ET

We all know that all too often life gets in the way and derails our plans  projects, and goals. The past several months have been an adventure I did not expect. This is where I have been.

On Being Diagnosed
I don’t remember when exactly I was diagnosed with Essential Tremors (ET), it was 25 years ago, give or take a few. I was in my late 40’s. A slight tremor in my hand precipitated my visit to a neurologist where she diagnosed my condition  as ET.

ET, or familial tremors, are hereditary. My grandmother had Parkinsons – or so we thought. Other family members had the shaky hands but it was called “old age.” No one in the family ever sought medical help so we will never know for sure.

The neurologist advised medication. There are no medications specifically for ET; so by trial and error, you have to decide what works best for you. Some had no effect, others had very troublesome side effects. Eventually we settled on propranolol.

My Life With ET

And life went on. I worked, I played, I enjoyed life. No one noticed, or so I thought. I later learned that people had noticed even early on. Secretly I was embarrassed and did not talk about it. Like the old adage, “out of sight, out of mind.”

But as is the case, it got progressively worse. Shaking developed in both hands, my head bobbed, my voice became weak, and people started noticing. Still I was too embarrassed to explain or talk about it. I sought further medical help with a new neurologist, we tried different medications, and Deep Brain Stimulation treatment was mentioned. After many unsuccessful visits, and being told I needed to quit drinking, I quit going to that practice. They apparently did not know enough about ET to know that a drink or two actually helps to alleviate the tremor.

When I retired my husband and I moved out of state. My condition had gotten so bad that I was not able to function. Brushing my teeth, eating, and writing were nearly impossible. My golf game suffered terribly. Imagine trying to hit a ball when your hands are shaking – good luck! My condition became a topic of conversation with our new friends.

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writing my name before surgery

Next Step

With the help of a new primary care physician I was able to connect with a neurologist, a specialist in movement disorders (Parkinson’s, ET). Within a very short time, I was talking to a neurological surgeon about Deep Brain Stimulation – brain surgery! Almost immediately they had me scheduled for surgery.

It has been three months since my DBS surgery. It was an amazing success, the doctors were overjoyed. The surgical cuts have healed and I am working with my neurologist and his team to adjust my DBS generator to the optimum settings to control the tremors. They tell me it could take up to a year.

In the meantime, so many things have changed:

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writing my name after surgery
  • I can write my name;
  • write a letter to my 89 year old mother;
  • talk on the phone; eat out; brush my teeth; hold a glass;
  • And, I can talk about my condition.

I am not advocating for DBS. It was a very scary and difficult decision, one I could not have made without the encouragement and support of my husband, my family and our new friends and their concern for my future quality of life – and, of course, without the confidence and compassion of my doctors and the entire medical team.

For more information about ET visit the International ET Foundation website.

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