20190603 182524Samantha's story

Behaviour Consultant, Samantha, shares her story about her childhood, growing-up and living with essential tremor

The first time I remember my tremors being something other than just what my hands did was at nursery.  We were playing musical statues and when the music stopped playing I was in a position with my hands up in the air, trying my best to stand still. I was told I was out because I was waving my fingers, which was something completely baffling to me because I wasn't moving on purpose.
 
When I started school I had similar experiences with such games and my drawings were very wobbly. My teacher recommended triangle pencils and grips for better handwriting but it didn't help. 
 
I had an inhaler for asthma and shaking was listed as a side effect, so not much else was thought about it. 
 
I stopped taking my inhaler as it appeared I'd just grown out of my chest problems (but not before have a few bouts of pneumonia). My hands still had tremors, but I learnt to hide them by putting my hands under the desk.
 
I found if I was holding on to something or pushing down the tremors weren't so bad so I'd constantly be gripping my pencil case when I wasn't doing anything else with my hands. 
 
I had good days and bad days. As a child I couldn't see any patterns. I saw a doctor who ran some tests and nothing unusual came back. It was officially chalked up to "one of those things and I was probably dyspraxic" since I struggled with balance.
 
I was labeled by my teachers "a nervous child" as when it came to reading out loud in front of the class the paper or book I was holding would twitch about. I started finding my own work arounds like remembering sentences so I didn't have to hold the paper or putting the book on a table in front of me.
 
I'd also ask to go to the toilet if I knew holding something in front of people was coming up.... which probably didn't help dispel my teachers opinion I was a nervous child. 
 
Well-meaning family friends would close windows or put the heating on because they thought I was cold. I'd politely decline sweets that were being passed around as I didn't want the other children to see the packets shake in my hands. 
 
When I was about 10 my friend had just got a new album, we were in my bedroom and I went to put it on, my tremors got really bad and I scratched the CD on the side of player. I was too embarrassed to explain what happened so pretended it was already like that.
 
When I started to get interested in make-up that uncovered a new set of challenges. I'd end up with a blob of nail varnish covering most the ends of my fingers then picking it off once it dried, and I found if I put eye shadow on my finger it was easier to apply that by using a brush.
 
At that point my tremors only seemed to effect my fine motor skills when I was trying to concentrate or if I was stressed. I noticed coffee and cola made it worse which makes sense with the caffeine. 
 
When I went to sleep overs and the other girls were doing each others make up I'd always make an excuse or i'd set up snacks or make sure I had an interesting story to tell everyone as I didn't want them to see how bad my shakes were. 
 
After I once smudged my best friends lipstick and almost poked her in the eye with the mascara wand- I knew my career as beautician was over before it had started.
 
When I got to college I took photography which I loved, but struggled to hold the camera still and load the film. My teacher was full of work arounds like using a tripod, setting the aperture larger and using flash so I'd only need to be still for a fraction of a second. 
 
When I was 18 I went to see the university GP about something unrelated and he brought up my tremors, he said he thought I had non-essential tremors. He said it was common people found alcohol helped...which is what ever undergraduate student wants to hear A reason to drink! Whilst the drinking did help, the pounding hangovers definitely didn't. 
 
When I was 28 I was diagnosed with thyroid medulla cancer. Thyroid issues can be linked with tremors. During my investigations we found my childhood home had lead pipes and after the water report we learnt the levels were beyond safe drinking level which is most likely the cause of my tremors. 
 
I need to keep a close eye on the dose of levothyroxine if I'm off balance my tremors are worse and recommend that anyone on levothyroxine or has thyroid issues has regular blood tests. 
 
Whilst it's still mostly my hands there are times affected my voice starts to shake when my medication is off. 
 
I give a lot of presentations at work to start off I'd be embarrassed if I sounded nervous I learnt people are more interested in your content and how you deliver it than your voice. 
 
I make sure I have space on the stage to move about as my tremors are less noticeable then or if I'm sitting on a panel I'll be mindful of where my hands are. 
 
I used a dictaphone during my post graduate studies to take notes, which would have been good to do whilst I was at school. 
 
I wish I'd known more about tremors when I was a child as I thought it was just me. 
 

If you have been affected by any of the issues mentioned in this story or want to share your story, please get in touch on enquiries@tremor.org.uk.

The NTF is sharing this article for information purposes only; it does not represent the NTF's views and is not an endorsement by the NTF of any particular treatments, therapies or products.