Archimedes Spiral

Archimedes Spiral

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.

A Reason to Share

“Are you nervous?” That is a question I have been asked when someone notices that my hands shake. I just say, “No, I am not nervous. I shake all of the time.” I have had ET for quite a long time now. I am only 25 years old, but I have been on a medication to help lessen my tremor for almost 10 years. I remember having signs of my tremor as early as middle school though, when another student came up to me as I was writing and held the top of my pencil and said, “Why is your pencil shaking so much?” Of course, I was a little kid, and I shrugged my shoulders and said, “I don’t know.” And I forgot all about it a minute later.

My tremors gradually got worse when I entered high school. I started seeing a neurologist. I wore fingerless gloves that came with weights strapped to the backs of them for about a year before we found a medication that helped. I think I got a lot more comments about the gloves than I did about the shaking without them. Some insensitive people (not all of them other kids) would say things like, “Are you going to beat me up?” or “Are you trying to be tough?” Others would ask if I had carpel tunnel. I would respond by being polite, but later on I would be embarrassed.

The medication I am on helps a lot, but I am embarking on a difficult journey. Part of the reason I have started this site is because I was online looking for a blog written by someone going through what I am going through. I had trouble finding one, so I decided to start one for other people like me to read. The journey I talk about is that I am slowly stopping my medication. My husband and I have decided that we are ready to have a baby, but there have been reports of birth defects with my medication. There is really no “safe” medication for me to take, so I have decided that a healthy baby will be worth dealing with my tremors at full force. I am thankful that my husband is very supportive and will help me with anything I need as my shaking gets worse. Especially since I have no idea how bad my tremors will really be. I have been on the medication for so long, and I have had to up the dosage, so I can only assume that my tremor will be worse than it was in high school when I started the medication.

The reason behind this blog is that I was trying to find one to read how someone else coped with their tremor during pregnancy. I could not find one, although I am not the best at searching the internet, so there could be one lurking somewhere in a far corner of the web. I would also like to reach out to other people who want to learn about how someone deals with ET or to support others who have it. I know this is a very long post, but I hope you will embark on this journey with me.

Getting Paint on My Hands

I just posted some pictures of some of my paintings to share with you. Even though I have Essential Tremors (ET), I still enjoy painting and drawing. To accommodate my ET, sometimes I have to plan out how I’m going to do my paintings. Because my hands shake, I steady my right hand whenever I write or draw or paint by keeping my hand on the paper or canvas. I find it difficult to write or draw with just the pencil or paintbrush touching the surface and the rest of my hand hovering above. When I paint, I usually start at the top left and work my way down to the bottom right so I’m not resting my palm in the wet paint as I work. I can usually expect to get a lot of paint on myself. Also, it will take me a long time to finish a painting because I need to concentrate on keeping my hand steady. Therefore, I will usually just do a small part at a time, then take a break to relax my hand. I am currently working on a painting of Mt Chocorua. I did the sky in one sitting, then the next weekend I did the mountains furthest in the background. Next, I plan on doing the mountains closer, followed by the lake in the foreground. I just wanted to share with you how someone with ET can still enjoy hobbies such as painting, it is just more time consuming and takes more concentration. Just because something becomes more difficult doesn’t mean you should give up something you love.

Welcome

Welcome

Sometimes, I feel like a lake that is constantly rippling. It is quivering and moving, spreading from one small spot until the whole surface is dancing. It is difficult to settle, once a pebble has been dropped.
I have had essential tremors for many years, and I plan to share with you the many ups and downs of coping with my shaking. Although my hands shake, some of my favorite hobbies require a steady hand and I continue to enjoy these despite my tremors. This is about the things I enjoy, love, and live for in this shaky world.