On Sunday, I went to an ET support group for the first time. It was interesting to hear from other people with ET. They shared their stories of how long they have had ET and tips for how to do things with ET. The majority of people with ET start noticing the shaking between their 40s and 60s, so I was the only one my age at the meeting. For some, no one else has ET in their family, while for others almost every member in their immediate family has the movement disorder. There is no way to know how often it will be passed down. There was even a mention of a couple rare cases where someone with ET will progress into Parkinson’s Disease. For some people, the shaking is in just one hand, others both hands, and some even have a tremor in their neck and head. I have it in both hands and my neck and head. The tremor in my head is not noticeable all of the time, but when it is acting up, it feels like my head wobbles.
At the meeting, we were given a pin with the Archimedes Spiral. That is the symbol used by the International Essential Tremor Foundation(IETF). The spiral is a tool used by movement disorder specialists to determine the severity of the tremor. My neurologist has done this with me. He will give me a piece of paper and a pencil and ask me to make a spiral starting in the middle without resting my hand on the paper. The spiral will usually get messier as I spiral out from the middle.
I’ve started wearing my pin with this symbol so other people with ET can recognize it and feel like they are not alone. It is also a good way for me personally to practice talking about my ET. Usually when I talk about my ET, I get flustered, turn red and become embarrassed. By wearing the pin and putting my ET on display, I hope to teach myself to talk about it without being embarrassed because I know it is not something I have control over and therefore should not be ashamed of. I know it is not my fault that I shake. It is a personal goal of mine to be able to talk about my ET without being embarrassed and to share my experience with other people in a calm and relaxed way.