Kevin, NTF Trustee, shares his personal story about living with essential tremor

KevinKevin shares his journey living with essential tremor

Growing up in the 1970s and 1980s with a tremor in my right hand was incredibly difficult. Particularly the 80s when I started work and was going out socially. I could not understand why I couldn't manage to carry 2 pints when everyone else could. If there were 2 of us, I'd carry a pint and make all manner of excuses as to why I'd left the other pint at the bar. Very exhausting! At that time my right hand had the tremor and my left hand was quite steady.

All the time I was completely baffled as to why everyone else carried drinks so effortlessly. I had broken my finger at a young age so that finger has always been a little crooked - my parents and my doctor both put my tremors down to that. So I left it at that.

When I started working I even learned to write left-handed for a brief while - that didn't last very long.

I knew at that time that after a few alcoholic drinks my tremor in my right hand would improve. Obviously not a great solution long term and the next day the tremors would be worse - I believe it's called the bounce effect.

During my career and before PCs and laptops I often wanted to improve myself and move up the ladder in whatever company I worked for. However the positions often involved giving presentations and using flip charts to write down any notes - so that proved a particular hindrance in quite a few jobs I went for. All the time, as far as I was concerned, no one else had tremors in their hands. So I continued to hide it. Who would ever make sense of it if I tried to explain!

I have so many bizarre stories of my younger years with tremors I could literally write a book.

Here are a couple of examples that come to mind.

At a holiday park at the age of seven & not being able to start an egg & spoon race.

Staring at a drink in a restaurant for nearly an hour, desperately waiting for an opportunity to take a sip, before eventually heading duck-like into the cup.

Throwing peas at the diner opposite me - fortunately it was family and they kindly offered me a dessert spoon.

One of my employers brought an important client back to the office one day. We worked from a converted garage attached to his family's home. His office was upstairs. My office was downstairs. He only used paper cups in the office. He shouts from his office upstairs "Kev, can we have 2 teas please. Both with milk and one sugar in each" - PANIC - not only can I not carry 2 drinks but carrying just 1 paper cup would severely test me. I must have paced around that office for at least 5 minutes. Should I fake a medical emergency? Faint/twist my ankle? Time was pressing. Finally I decided to break into the boss's house next door and acquire 2 mugs. I was lucky, the kitchen door was already open! First part of solution achieved. Now to get the mugs upstairs with some tea in them. I poured half a cup of tea into my employer's mug and took it upstairs. I needed a reason to explain why I didn't have 2 mugs. I looked at his important client and said "my apologies, I didn't quite catch what you wanted - was it a tea with no sugar?" He corrected me but I knew full well what he wanted and I went back downstairs to bring up his half mug of tea. Good grief!

To add to this, I had to adapt daily routines - on spending money whether in a shop or on a train/bus etc I had to ensure I had the correct amount. The last thing I wanted to do was to hold my hand out awaiting change.

I woke up every morning thinking about my tremors and went to bed at night with the same thoughts.

On attending polytechnic in London in the early eighties I just couldn't keep up with the amount of writing that was needed and I left in my first term. It was only later in life that I realised that because of my handwriting difficulties with my tremors I very often had to keep written examinations to a bare minimum of content. I just didn't have the time to write all that I wanted to. Unfortunately that probably reflected in the grades I achieved. Surely there must be something in place in our education system nowadays that accommodates these types of problems.

So in 1996 and as my tremors worsened I was finally sent to a specialist who diagnosed benign essential tremor. At least I finally had a name for it! As technology moved on I found a phenomenon called the internet and Google. With these tools I stumbled across the National Tremor Foundation. What a huge relief that was. I became a member and realised that I was not the only person with a tremor. I looked forward every quarter to receiving the newsletter. It was informative, often quite funny and had plenty of content. When the position of treasurer came up in 2003 I jumped at the chance. Finally a chance to get involved and try to ensure that no one felt alone if they had a tremor.

I attended conferences every year and made many friends who shared similar stories to mine. The whole organisation had a very cathartic influence on me and I suddenly had the confidence to share my tremors with friends and family.

When I started a new (and still my current) job in 2011 I decided to be completely up front with my new employer and explain that I had a condition called essential tremor. He must have thought I didn't want the job (which by the way is dealing with the accounting side of the operation). I rambled on that I was slow typing, very slow at writing, couldn't make tea and needed a day off every 3 months to attend trustee meetings. And on and on I went. He didn't flinch. "Don't worry," he said, "there are people here who can help with all of that. When can you start?" From that point on, my working life became so much easier. Not because I didn't need to do anything but because I was more relaxed and less anxious. My hands became less troublesome. I started to look forward to going to work. These problematic tasks suddenly became a little easier. Everyone is more than happy to help if they think I'm going to struggle with something. Very often we will make a joke of it. Despite what you read in the papers or see on the news, people are essentially very kind and willing to help others.

At home, and as my tremors have worsened slightly, life can be so frustrating at times. (I no longer take any medication for my tremors). My poor wife is so understanding and I'd be lost without her. She's always mopping up the kitchen and living room floor where I've tipped tea or a drink. If we go out, she is the one who goes to the bar to get the drinks.

After over 20 years of being involved in NTF I realise the huge importance of its continued involvement in neurological tremor in the UK. We are only a small charity with limited resources, but over the last few years we have made some great achievements and significant progress in getting increasing interest from various organisations around the world who want to attach themselves somehow to the NTF brand and its reputation in this field.

Our volunteers are so passionate in what they do and we are unbelievably grateful for their involvement in the NTF. We know that each volunteer creates an awareness of neurological tremor in so many areas and that is the reason why we are always looking to increase our volunteer base.

If we had further resources we could also do so much more both in research and support and that is why funding through whichever source is so important to us. There is still so much out there that we can achieve and grow with at the same time.

My main but not my only takeaway from my experiences is that it is so much better to be up front and forthcoming with any difficulties you face and not try to hide them. And those problems/difficulties can manifest themselves in so many ways not just tremors. The relief you feel when lifting that burden is something that will always stay with me. Starting as a volunteer for The National Tremor Foundation gave me that opportunity to lift my burden.

Together, we can make sure no one faces life alone with tremors

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