Essential Tremor – a young person’s reflections

Ed Lecorgne answers the NTF News request for news from younger people living with essential tremor and talks positively and with great humour about his life so far.

My name is Ed and I am 17 years old. I’ve known about the essential tremor (ET) condition in my hands since I was very young, as my dad has it mildly and he knew what he was looking for. 

After reading the note in September’s issue asking children to feature in NTF, my mum pestered me to write a letter for you, and so I gave in and started this. However, there is a small difference between what you were asking for and what you are getting from me. You wanted stories about how children coped at school with the embarrassment and anxiety of ET, whereas I have decided to show you a more positive side to it (I hope...). 

ET wasn’t really an issue for me at primary school. Of course, there were issues now and then, usually involving large drinks filled up to the brim, and the distance to carry them, but mostly it was fine – young children didn’t seem to notice it either, so I didn’t feel embarrassed about it.  Writing was difficult, and so I limited writing by using bullet points, and as English was and is still my best subject, I found that not being able to write as fast was irritating, but it also gave my brain time to expand and think about what I was writing; to make it the best that I could, so I didn’t lag behind. 

While at primary school, my parents decided that it would help me if I learnt to touch-type, so that I could “write” at the same speed (or close to it) as everyone else, without having to stop every 5-10 minutes to rest my hand. This was, despite the boredom of learning it, one of the best things that I could have done, and it has been a continuous help my whole life (and I recommend it to everyone, with or without ET).  

Using a computer in class meant that questions would come (over and over) about why I used it, but in primary school the questions were merely a way to get the conversation going – the second question usually being “When you’re done, can we play on games?!”  

One of the more interesting parts of ET was when I was in year 4, and had to go for an MRI scan on my brain (no not to check whether I had one or not...) which was pretty scary at that age, but also pretty exciting, especially as I had to go down head first (obviously), and it was like some futuristic spaceship in my mind.  Despite the original fears of going in a whirring pod, it was fine (and if anyone was wondering my brain is okay too), and it also meant that I had a brilliant anecdote for later life. 

In secondary school, and at college (1st year), I was never insulted or  attacked for having ET, however every now and then someone will notice, and make a comment like “Are you cold, because you look like you’re shivering?”, or “Are you nervous or something? You’re hands are shaking loads!” For me it’s more the irritation of having to explain something over and over again, and also the slight embarrassment between you and the person once I’d finished – the “Oh sorry” reply even though they had no idea of knowing - and I don’t really mind that they asked, but they still feel a bit embarrassed. The other slight anxiety is explaining it to your teachers and tutors. The anxiety comes from the fact that you don’t want them to treat you in a different way from the rest of the class – too nice to you and you looked like a bit of a wimp, too mean and it meant that you disliked the teacher forever. The problem is that they don’t know about ET for some reason – despite the fact that they should have been sent an email about it by the main tutor and learning support.  The confusion arises when you sit down in the lesson and get out a laptop or log on to the nearest computer, and the teacher comes over and says “What are you doing?”

Perhaps one of the best things that the NTF has done, from my perspective, was around three – four years ago (back when it was redder, and had good jokes in it). And that was a free card (like an ID card or buss pass), that simply explained the condition.   This card was invaluable to me, as whenever someone, teacher or pupil, asked me why my hands were shaking, and after my reply said “Tremor what?” I could just hand them the card.

My friends are great about it, and when someone asks me ‘Why I’m shivering’ they will sigh with me, or sometimes explain it if I can’t face doing it for the 100millionth time. With my friends I can also make jokes about it, and it also gets me out of having to hold their food and drinks while they do stuff.

My hands don’t really affect my day to day life, apart from the fact that my mum usually has to carry more full cups of tea up to my room as she doesn’t want stains on the new white carpet! One of my main hobbies is art, which can be problematic due to all the time needed to hold pens or brushes, which is one of the reasons I prefer doing art using spray cans (legally, don’t worry everyone), as they are easier to hold and put less pressure on my hands (although I still have to stop every so often). 

So that is my ET education life so far – only university to go!