London and South East ET group enjoyed their cruise along the Thames from Westminster to Greenwich on 29/7/17. An opportunity for movers and shakers to meet others, just be themselves and not worry about their tremors. We would like to thank our member Catherine Hadler for taking these great photos. They are a wonderful reminder of our fun day out with great company.
As we sailed along the Thames we had the opportunity to admire many of London’s landmarks. Here are a few:
A few words from our member Catherine Hadler:
‘I really enjoyed a trip up the river with our fellow ETers, it’s a condition that I try to hide and not discuss in everyday life, so it’s quite a relief to have a cup of tea with a group of people who understand just how frustrating it is when the cup is shaking like mad and to not have to worry about being judged at all. It was great to let our hair down and have a good laugh about our everyday challenges, and we also enjoyed a really interesting boat trip to Greenwich and are very grateful to Jackie for getting everyone together. I try not to let ET affect my life too much, but all of my work depends so much on using my hands so I find it’s really valuable to keep in touch with fellow sufferers and to share tips and find out about the latest developments in ET research, so I would highly recommend getting together with a group in your area if possible’
Thank you Catherine for the great photos, we couldn’t let our event pass without a couple of photos of yourself too. Jackie Farrell (Living Life with Essential Tremor)
Saturday 17th June 2017, Sutton, Surrey. Essential Tremor and Genetic Haemochromatosis awareness day.
Being diagnosed with both these disorders, I was invited by a local health care team to be part of their Health Fair stand in our local town centre. It was a great opportunity for me to spread the word of both. There were nhs doctors on hand to offer advice in their walk in surgery and passers by could have their blood pressure checked too. Our two banners also drew attention with people keen to know about both disorders and the glorious sunshine was a bonus. We have been invited to take part again at a future date.
Interestingly, another stallholder on seeing the ET information mentioned his wife has Essential Tremor and is keen to arrange an ET talk at a later date for his pensioners group. Jackie
The symbol of Essential Tremor is the spiral. This is the third year we have created a lawn ET spiral labyrinth in our garden for Summer Solstice. A few meditation friends came along to join me for an evening of meditation, walking the labyrinth and also creating their own “Spiral” art! Jackie
Essential Tremor lawn spiral
It really was a beautiful evening and the spiral drawings were amazing, all completely different.
Why not make your own ET “Spiral” drawings by letting your mind be free? It doesn’t matter what they end up looking like because they will be unique to you. Jackie 🙂
Our coffee/chat meet up at Royal Beach Hotel, Southsea was welcomed by local ETers who’d never met others before, as well as ET regulars Katy and Steven from further afield who came along. A great opportunity to share experiences and ideas in a relaxing environment with very supportive hotel staff. Because we each understood how challenging Essential Tremor can be for us in a social environment we managed the refreshments with very little spillage! Our group may have arrived as strangers but definitely left as friends. Love these meets, always learn new things.
Some of you may recall from previous posts Merane Todd took up running a few years ago and has taken part in various marathons. This year Merane has taken on a new challenge of “Triathlon!” Let’s show our support and encouragement: Over to Merane to explain her new triathlon challenge!
“I am taking part in a sprint triathlon on the 9th April with some girls from my work. None of us have done a triathlon before so we have been training together as much as we could.
The sprint triathlon is 400m swim followed by a 20km cycle and finishes with a 5k run.
I thought it would be relatively easy as it was marketed at beginners. I thought I could already swim & run I just have to master cycling & they say you never forget how to ride a bike.
Well my memory is not a good as it used to be & seemed to have forgotten.
Picking a bike was quite tricky, I walked into a shop & saw a beautiful blue one (my favourite colour) With flat handles. I said I wanted that one straight away. I always shop with my heart instead of my brain. But after trying it I found, flat handled bikes are not suitable for me as my hand goes into a spasm after a while, of course it was nothing to do with me gripping onto the bike for dear life.
They brought out some road bikes with drop handles I didn’t like them straight away but I sulkily tried, my heart still with the blue one. After begrudgingly trying numerous bikes at different shops. I found a drop handle one which I was comfortable with. Although I don’t really like road bikes the position is a lot better for me as I can move my hand into different positions. It really does pay off to shop around and get advice.
Now the hard part learning to cycle. I was ok wobbling around the quite side streets with no traffic. But mastering gears on the bike and hills was a different matter. I went out on quite roads to practice with friends, it was painful listening to me crunch through the gears. So far I have managed to break the bike twice. I’m the local bike repair shops favourite customer. I persevered with cycling and touch wood seem to be doing ok.
I thought it was just the bike to master but I was wrong. I didn’t take into account how tiring it would be doing two activities together, I have been practicing, swim, cycle & cycle run sessions. My legs are like jelly after getting off the bike, I end up doing more of a fast walk rather than a run.
I had to re-think my training plan and put more rest and easy activity days in to recover and allow for any bad Tremor days. I am just hoping that on the day my tremors are not too bad. But it’s only a week to go now so too late to back out. I won’t be going out to set records, even if I’m the last person across the finish line. I will be just happy to finish and say I did it.
Here’s to never giving up.
LLWET: You are amazing Merane, we support you wholeheartedly in this new venture of yours. The main thing is just to enjoy taking part whatever the outcome. Look forward to photos of the event.
The National Tremor Foundation Awareness Day March 25th 2017, Central Hall, Westminster,London was a great success. Geoff Salmon from NTF and Jackie Farrell were delighted at the response from all who attended and helped make it a relaxing, informal afternoon.
Jackie who organized the event on behalf of NTF quoted:
A wonderful day with so many lovely people. It was great to see our attendees enjoying being in the company of others who shared the same disorder. We appreciated everyone making the effort to join us (especially as Westminster was extremely busy with other major activities going on same time!) Some of our group had traveled quite long distances to attend including Dublin, Yorkshire, Cornwall, Kent.
We were pleased to introduce our guest speakers Faii Ong founder of GyroGear explaining about GyroGlove and Matthew Walker from Insightec, the makers of the Focused Ultrasound machine, currently in trials here in UK for Essential Tremor. Both were busy throughout the afternoon with people keen to learn more from them.
We share Ed Lecorgne’s story from where he left off age 17 in 2010 about to go to University. Here Ed explains his journey through Uni coping with ET….
This is a follow up article to one that I wrote a long time ago. That one was entitled ‘a young person’s reflections’. In the original National Tremor Foundation’s newsletter that I responded to, the editorial team were asking for stories about how young people were coping with their tremors, and the situations they found themselves in. So I wanted to begin this with a moment I remember from my month in Myanmar. I was tired and exhausted, and sitting in a knock-off Wetherspoons pub in the ancient city of Bagan. I think they got round the copyright rules by spelling it weather-spoons if memory serves. I remember repeatedly asking the waiter for a straw to go with the cup of tea I was drinking, the combination of tiredness and slight hangover combining with my tremor meant there was no way I was picking up a full cup of tea. The look of blind confusion on the waiters face when he came back with a glass of water with a straw and I hastily grabbed the straw and dunked it into the tea. Tea from as straw is by far one of the worst ways to have tea, but I hadn’t had one in about three weeks so i was willing to go to any lengths.
But let’s go back a few steps. In 2010 when I was 17, I wrote an article that I sent in to the NTF website about being a young person with essential tremor. Beginning of 2016, Jackie Farrell, who I am sure you all know, and if you don’t, you really should, sent me an email asking me if I was around to come to an Essential Tremor awareness day meeting she was putting on, which I did. She also has been asking me to do a follow-up article to the original one I wrote over seven years ago for the past few months. Due to time constraints and other boring life stuff I have been putting off doing it until now. Upon meeting people at Jackie’s event and speaking to her afterwards I finally have found the time to piece some words together. So….
My name is Ed and I am 24 years old. I’m at that age where I feel old because my siblings are graduating from university and I’m living in a flat that I have to pay bills and council tax for. I have essential tremor in my hands/arms. I’ve known about my essential tremor since I was in Primary school.
At the March 2016 ET meeting in London Jackie asked me to stand up and talk a little about my job, university and what I’d been up to since the original article, and that’s what I’ll briefly try and cover here. I’ll start by mentioning university. If there is one place where no one will care if you have a tremor, it’s university. It’s possibly the most all-accepting place you go to if you decide to go. Sure, you’ll get the odd remark and when you meet a lot of new people it can be embarrassing to explain it…maybe the first 6 times, then you’ll get over it, trust me. The amount of new people you will meet will quickly make it commonplace, and no one will bat an eyelid. I mean, one person I met thought I was an alcoholic but that may have just been because I only ever saw them in the university bar, it’s hard to tell.
In terms of part-time jobs, I had some really bad ones during my university summers. Living near the Henley Royal Regatta and desperate for some holiday pub money I signed up for a weeks worth of work there for three years running. I think the worst one I was given was working at the ‘Coffee and Liqueurs’ bar. I struggle with one cup of tea or coffee, let alone a saucer, so to be given a tray of six espressos with saucers was a largely pointless exercise. After the futile second attempt in which all of the espresso landed in the tray or on my shoes, the manager quickly relegated me to a dark back room and put me in charge of mixing up the iced coffee, something that I gladly accepted. The other years were similar – the busy bars meant I had to get pints as close as possible, but in the heave of the crowds no one minded a little sloshed over the rim.
Then it came time for the dreaded moment when I left university. I say dreaded mainly due to the reality of having no money and not being able to generally hang around with your friends all day with no real responsibilities. But it also meant going for job interviews. So, in a suit that was a little to big for me, I went for my first interview at a company, my hands shaking like there was no tomorrow. I remember this interview vividly for two reasons. Firstly, because the moment I opened the door a dalmatian jumped on me, something I was not expecting and, with my fear of dogs at the time, didn’t exactly help assuage my nerves. Secondly, because it was the job I got and am still at today. The main reason I bring up my interview is because I was obviously very anxious, and my hands were not helping the scenario. But I remember what my now boss said when I told him about my shaky hands. He looked at me and just said ‘Everyone has things they have to deal with, when can you start?’
Now, three-ish years later, and still work there. My job is working for a publishing company creating resources for schools. I do a lot of varied jobs there, but the reason why Jackie asked me to stand up and talk about my job is because of one specific thing I’d been doing: Shooting and editing video. Yes, video. Imagine going up to your boss and explaining that you’d love to go and film some things to create informative videos for kids, but you physically can’t hold a camera still. Still, we looked at cheap equipment, and before I knew it I was on my own driving solo from the Canadian border to the Mexican border through midwest America with nothing but myself and the steady cam gimbal equipment, with instructions to film everything along the way. I can tell you it’s quite a nerve-racking experience driving on the wrong side of the road through the jammed highways and interstates, and to stop in a place you have never heard of and have to shoot exactly the right amount of perfect video, but you get used to it (you don’t). But regardless of my anxiety over my hands, and what I thought it would stop me doing, I spent 8 weeks in 2015 taking videos. And in October 2016, I went again, and did another four weeks. Meeting strangers every day, interacting with new people constantly.
I’m saying all this stuff because it was something that I never thought I had in me. It was the most extreme situation, where I was alone in a country I’d never been to for four/8 weeks solo, and I had to think about my hands every single day doing video. It was exhausting and tough beyond belief. But I’m also so glad I did it.
Now, there are days when my hands drive me crazy. I went to an important meeting for work this week and I was trying to give a presentation where my hands were all over the place. I tried to show something on a laptop, and ended up closing the whole presentation. I’ve ruined countless t-shirts, stained rugs, not been able to pick up cups of tea, eat food – I mean soups are out of the question regardless. For anyone who is near my age or still in their teens, selfies/videos. I’ve even had people come over at the gym and ask if I need help because my hands are shaking holding the weights (they were heavy though…).
Some days you want to just scream, and I have many a time.
But at the same time I wanted to try and show positivity. There will be things you can’t do, but there are hundreds of things that you can still do if you put your mind and effort to it. I’m trying to stay away from my own cynicism here – when I say there are so many things about yourself that you can focus on and change, that putting all your anxiety on something you can’t change seems like a losing battle to me.
I think to fall back on the excuse of ‘I can’t because of my tremor’ is the easiest thing to do. You should be able to say ‘I did it in spite of my tremor’. Challenge yourself. The two I’ve done are rather easy examples of this – I love to do writing but I can’t really hold a pen. So I learnt how to touch-type and now I can type faster than most people write. I wanted to go and do videos for my company but I can’t hold a camera still, so I researched equipment that I could ask the company to buy so that I could still create footage. I’m not under the pretence that all things are this easy, and many of them can’t be done. But trying is the important bit.
Okay enough of the sunny outlook for one day, if you meet me after this and I’m super cynical I’m just going to blame it on old age. I’ll be at the meeting this Saturday (depends when this post goes up), so come and say hi. If not I’ll put my email and twitter and things on the bottom of this email feel free to contact me. Bet you can’t guess what my twitter or instagram names are…
Instagram: @Edshakyhands (trust me I’ve edited out like 90% of the blur)
LLWET: Thank you Ed for sharing your Uni experiences with us and also encouragement for others of your age group.
If you are interested in reading Part 1 of Ed’s journey then you can find it on our ‘Young Adults with ET’ page.
Customers were able to pick up ET information along with their shopping at Asda supermarket, Sutton, Surrey, Wednesday 15th March 2017
Jackie Farrell who arranged the ET awareness day said “We were welcomed by Asda, Sutton as part of as part of NETA (National Essential Tremor Awareness month)”. Two separate customers were so grateful to find about about ET as family members had tremors but too afraid to go to GP’s!
Jackie and NTF would like to thank Tracey at Asda for her help and support.
Monday 13th March 2017 – ET presentation for staff at Queen Elizabeth Foundation, Carshalton, Surrey. The staff knew of ET but were keen to learn more about the disorder in order to help them with assessing patients with tremors.
The talk was well received with many questions being asked at Q&A time.
Two weeks to our 2017 ET Awareness Day in London!