My Essential Tremor Story

By Janet

Introduction
At first I did not know I had ET. Looking back, I see that it was evident when I was a child. Stressful situations brought on a tremor. It was just the left hand, then both. The head tremor came much later. As it is a movement disorder when one is still the tremor does not show. For me it has been a gradual progression. I could almost ignore it – then I could hide it. Eventually I could not hide it anymore.

Talking with friends about it was a release. Laughing about throwing food and spilling drinks made it easier. ET is part of me now.

History
When I was 7 years old I, got paralytic polio which affected my breathing. I needed an iron lung for breathing support. Once I was out of the iron lung, other problems became evident: a useless left arm and a weak neck. When lying flat on a hospital bed I could lift my paralyzed left arm with my good arm and place it behind my head to use as a headrest so that I could look around the room. After months of physical therapy my muscle strength did come back, and I could eventually go home to my family. I experienced some issues with polio, but after finishing high school, it was no longer a concern. Fortunately, I could live a normal life.

I was diagnosed with post-polio syndrome (PPS) in my late 40s. Broadly speaking PPS is muscle weakness. When I experienced a tremor I thought it was part of PPS.

Tremor
When I was 11 years old, we got our first TV. It was a large box with a black and white picture. I was watching children’s television with my dad. It was about people being stretched and tortured in the Tower of London. I was trembling. Dad noticed and was saying “it’s only a story.” I knew it was just acting but my nervous system behaved like it was real.

At elementary school we sat at desks with an ink well that rested in a round hole, on the top right side of the desk. The ink wells occasionally required refilling. Students were issued ink pens which were just a length of dowl with a nib fixed on one end. We dipped the nib in the well and wrote on our paper. We learned to write beautiful cursive text with thick and thin lines. These nibs didn’t last well with me because I pushed too hard, and the nib would split, or bend and I’d need a new pen. Subsequently, my parents provided me with a fountain pen, which proved to be significantly superior as it stored ink internally and the nib glided effortlessly over the paper. Problem solved. In time we dropped fountain pens and used ball point pens.

In high school my favorite class was English Composition but when the inspectors came I could not write if I thought they were watching because my hand would shake.

In my teens I was going on my first date in a foursome, and I was so nervous. Mum understood – she gave me one of her nerve pills – it worked great. I never needed a pill again. Dating was fun. My mother may have had ET, but if she did it was very mild.

Often when applying for jobs you need to take a typing test. I was a reasonable typist, but testing caused the shake to rear its ugly head. I made it through, but at a slow speed. Job interviews were fine. I enjoyed working and frequently changed jobs in my 20s to gain experience and enhance my skills.

Eating Out
Alki was one of my favorite places to bike ride or walk along the shore. There was so much to see: people, dogs, boats, ferries, scuba divers, seagulls, pigeons. One day, we had lunch at a busy Mexican restaurant. We shared a table with another couple. The man asked us to please excuse his tremor.  “Is it essential tremor?” I asked. It was. “Me too,” I said.  He was the first person I ever met who had essential tremor. It felt good to meet another ET’er.  We were all smiling. We had both ordered fish tacos – (finger food.)

My husband and I went on a cruise. Each night before dinner, we had a Black Russian at the bar. The alcohol calmed my tremor so that I could eat with confidence, but as the tremor got worse I would not be able to calm it with just one drink. Now I will ask for a drinking straw or suck through the stirrer without lifting the glass until the level has gone down. I seldom drink alcohol now.

ET Diagnosis
Eventually I became concerned that this tremor was getting worse, and I mentioned it to my ENT doctor. He said, “I don’t think this is anything to do with your childhood polio” and suggested I see a neurologist.

The neurologist diagnosed me with essential tremor, a condition I was unfamiliar with. Everyone knows about Parkinson’s disease, but ET is about eight times more common.  Essential tremor (ET) is not noticeable when at rest. It’s a movement disorder.

There is no drug specially designed to treat ET, but many people use propranolol, which is a beta blocker to slow the heart. Unfortunately, it is also a breathing suppressant. What I liked about the drug is that it gave me confidence, but it didn’t decrease my tremor.  The next drug was Primidone which is a seizure medication. It made me feel like a zombie. Shaking was preferable to both the standard drugs. I do not take anything to treat ET now.

Support Groups
I initially avoided support groups, thinking people would just complain about their conditions together. This is not what happened. In 2005 I found a group for polio survivors. We were all different with polio in common, but our personal polio experiences were unique. We talked and shared information and laughed quite a bit. These people became friends.

Once I had the ET diagnosis I looked for an ET support group. I joined a group that meets in a wine tasting facility in Kirkland. Yeah alcohol. Blended wines. The first meeting I attended was amazing because everyone had a tremor in their hands or heads (the no, no’s and the yes, yes’s).  It felt great. These are my people. I am not alone with this condition. It was interesting to meet and listen to their stories.

Meetings are rare because our host only schedules them if he has a guest speaker. There are many gadgets to help control hand movement, like weighted silverware, and other hand devices that can absorb the tremor and mouse control applications that can help with unintended double strikes of letters (Steady Mouse).

We have had quite a few speakers and learned about the surgical options: Deep Brain Stimulation and Focused Ultrasound. Surgery is a huge step. A polio doctor felt with my polio history I should not have the surgery.  Many people on the closed IETF Facebook support group (Essential Tremor Awareness Group) are happy with superior results from brain surgery. Some say that the good result does not last. Of course, we know alcohol can calm the tremor, but there is a rebound effect. Other people like to use CBD oils. Apparently, the tremor originates deep in the brain just above the brain stem located in the thalamus. The brain surgeon can probe to find the exact location causing the tremor, and target that one tiny spot. However, there are possible side effects, and the fix may not be for a long period of time. ET is a progressive condition.

Thankfulness
I believe I have had ET since I was a child, but I was not diagnosed until I was in my 50s.  Treatment options exist, but more research is needed.

I am learning to live with my disability and enjoy the things I can still do. I have so much to be thankful for including a diverse family, good friends, and a quirky sense of humor. Life is what you make of it. I feel blessed.