Living with ET

Hi my name is Matt, I am 11 years old, and I have an Essential Tremor in my arms and hands. My mother noticed that "something wasn't quite right"†with me when I was about one year old. However, I met all of my childhood milestones, so mum thought that maybe there was nothing wrong at all! I went to kindy when I was 2 and a half and there they talked to my mum about me and my 'shake' (as it has come to be known!). My mum took me to the doctor, and my journey with the medical profession started. I went through a variety of tests and after a few mis-diagnoses, I finally got diagnosed with an Essential Tremor.

My family and I learnt a lot about Essential Tremor and we are still learning – just like everyone else. One thing that I was pleased about was finding out about the Essential Tremor support group – and especially Robyn. I have enjoyed going to the meetings (not the long ones though) and meeting other people who have an Essential Tremor. It was nice to know, and talk to, other people who have the same thing as me!!! There I am not different–“ my mum is!! (She comes with me but she does not have a Tremor).

Although I have a Tremor, I have still done everything else that other kids do. But I must admit that not everything has been easy. The hardest thing was getting used to saying "Oh I shake because I have a Tremor". Sometimes I get teased, but most often people just ask questions, because they are interested in why I shake. After a quick explanation, it is usually never mentioned again.

I have played a lot of sports including Touch, Soccer, Hockey and Gymnastics. Me and my mum think that the Gymnastics was really good for me because it helped to build up my muscles and after doing Gym my shake seemed to be a little less noticeable – we don't know why, it just was! The things I find a real challenge are bike riding, drawing, painting and writing. I think it is because I try too hard, and the stress of trying not to shake, makes me shake even more!

I have had lots of experiences in my short life, including being in the school play and travelling overseas twice. During all of these things we had to make some adjustments for my shake, but it was worth it! I was a main character in our school play. They got a hands free mike for me to make it easier when I sang; and they made my props bigger for me, so I could use them easily. I really enjoyed doing the concert! When I travelled (Australia and USA) I had to make sure I had lots of sleep, because if I didn't my shake would get worse! Also when I went on scary rides, my shake got worse – I think it was the stress! I know when I get bigger, my shake will affect some things in my life – but I know I will be fine! I talk to the other Essential Tremor people (at the meetings) and although sometimes it is hard for them, they cope! When I am older more people will know about Essential Tremors and maybe there will be a cure! So life for me will be good!

By Matt (with some help from my Mum).