National Tremor Foundation Meet up 2018

‘Shine like the whole universe is yours’- Rumi

 

The past few weeks, I have been very busy. I have found myself always trying to do something productive. Not because I want to distract my mind, but because I’m trying to become a stronger, healthier and happier person. I have been going to my local gym 2/3 times a week and have found that it really helps to ease my anxiety and calm my mind a little bit. I enjoy that I am focusing on my body, the music and nothing else. I have found that the whole experience is quite soothing and gives me energy for the rest of the day. I have also been continuing with my meditation, which I have found to be an extremely important part of my weekly routine. As well as doing exercise, I have found that it gives me more energy in general. I even managed to get my sister to try it and she loved it!

On the 17th March, I travelled to Oxford with my family to attend my first ever ‘National Tremor Foundation’ event. The event was an annual meet up of people from all age groups who all have Essential Tremor in common. It was strange to think I was going to meet people with the same condition as me for the first time. I wouldn’t say the thought of it was overwhelming but it did take me a while to actually comprehend the magnitude of the event for me, personally. I had gone through 21 ½ years of my life without ever (knowingly) coming into contact with someone else with the same disorder. I couldn’t quite believe that there was going to be a room full of people who all knew exactly what I have gone through and what I continue to go through on a daily basis.

Essential Tremor meet up

When we actually got there, everyone was very welcoming- especially the organiser, Jackie, who had done an incredible job with sorting everything out. I spoke to people of all ages, and it was interesting to learn how each individual person had adapted to deal with their tremor in their own unique way. There was also a range in severity from people whose tremor you could hardly see to those whose tremor was very apparent, which highlights the fact that this condition isn’t just affecting people with a severe tremor, it’s those whose aren’t as noticeable as well- after all we all feel the same way.

There was also a lot of family and friends who were there to support the people with Essential Tremor. Like all conditions, tremor does not just affect the person who has it, but everyone around them as well. They are the ones who have to deal with your ups and downs as well as the side effects of medication. I took my sister with me and she told me afterwards that she had learnt a lot from the experience and was shocked at the amount of people who actually had it.

Jackie

We listened to a variety of presentations, ranging from general information about tremor to the latest solutions in dealing with the condition. There was also a talk by one company, GyroGear, who are actually working on a glove (called ‘GyroGlove’) to help counteract the tremor, which I found particularly exciting. They have already gone through many prototypes of the glove and have found it to have a high success rate. The thought of a glove that could help me to lead a relatively normal life is amazing but I’m trying not to get my hopes up too much just yet- but fingers crossed!

Finally, on the 22nd of April, the National Tremor Foundation is entering someone to run in the London Marathon for the very first time. This is incredibly exciting as it opens up the possibility for more awareness! The runner, Alan Corrigan, has essential tremor as well, which is great as he breaking down barriers on the limits that people sometimes can perceive that we have. If anyone wants to support Alan with any donations or just wants to find out more go to:

https://uk.virginmoneygiving.com/AlanCorrigan

 

Thank you for reading!

 

Chloe x

 

P.S if you have a tremor too and live in the UK, GyroGear are looking for people to test the prototype of the GyroGlove, if you are interested, there is more information on the website:

http://gyrogear.co/

Once again here’s the National Tremor Foundation website, for anyone who is interested:

www.tremor.org.uk

And also the International Essential Tremor website:

https://www.essentialtremor.org/

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Anxiety in the 21st century

‘Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength’- Corrie Ten Boom

Anxiety is a topic that I have heard a lot about in the past few years. It seems as if our generation has grown up with constant fear, stress and worry. There has always seemed to be a relentless flow of pressure stemming from every aspect of life. In primary school it was making friends, weekly tests and SATS. In high school- endless homework, GCSE’s and making sure your uniform was ‘just right.’ In college there was driving tests, coursework and A-levels. In university- meeting new people, keeping up with deadlines and the pressure of working hard to get the degree you want. It’s almost like we haven’t had a chance to breathe; stifled by stress and expectation. There was always something waiting to be completed; always a goal you hadn’t yet achieved.

All of this whilst dealing with a stress unique to our age group- social media. Facebook, Instagram, Twitter, Snapchat… the list goes on. We’re all guilty of it- asking ourselves why we don’t look like these supermodels that edit their pictures to an inch of their life, wondering how those people can afford to go on holiday every other week- should I be able to do that? Why can’t I do that? What have I done wrong? The truth is that isn’t reality for 99.9% of the people on this planet. We can’t compare ourselves to impossibilities. There are hundreds of ways to edit a picture nowadays. You can even use filters on Snapchat to make yourself look completely different. We all do it- I even check everyday to see what the new filters are- to see what I can turn myself into. The majority of the time it’s just a lot of fun- I mean, who isn’t laughing at themselves as a dancing rabbit? But there is always that danger of seeing people with these ‘perfect’ lives and thinking that it’s real- a picture is just one moment in a person’s life; a nanosecond of what they are doing that day. I know a lot of anxiety comes from social media in a lot of cases. You just have to tell yourself, as hard as it may be, that it doesn’t matter. Likes don’t matter. Followers don’t matter. Social media shouldn’t dictate how you live your life.

For me, personally, anxiety is something that I have dealt with as long as I can remember. I was a very quiet child because I didn’t want to have to deal with the anxiety that came with attention. I hated the limelight and to this day I can’t understand how anyone could enjoy being the centre of attention. There always seemed to be someone judging you, waiting for you to slip up. I remember one time in high school it was our form’s turn to present in assembly. Naturally having Essential Tremor, this wasn’t my favourite time- in fact, it was absolutely horrendous. I stood up and read my part and, of course, my legs started shaking. I tried to block it out of my mind, I tried to forget it ever happened and just got on with my day. However when it came to break time I remember one girl actually coming out of her way to tell me her and her friends had been laughing at me and thought it was hilarious how much I was shaking. How was I supposed to respond to that? What did she expect me to respond to that? This was something that really affected me because it made me think my tremor was more noticeable than it actually was- the sheer anxiety that this event gave me was horrific. And, to think, she probably forgot about it straight away. Since this time I have learnt to cope with my anxiety a lot better, even though I am still a very anxious person by nature. I try not to go over events continuously in my mind, wondering what I could’ve done/said differently. Because it doesn’t matter, you can’t change it so why worry? It is what it is and it has happened that way for a reason. Personally, I believe I became a stronger person because of ‘little’ comments like this.

What I have been trying to say is that even if you have anxiety and stress in your life- you can’t let it decide how you live. You’re not on your own, I can guarantee there are hundreds, even thousands, of people worrying about the same thing you are. Talk to a friend, your parents, your family, your teacher even your doctor- someone will be willing to help you to overcome this hurdle in your life. And speaking from a lot of experience, you will overcome it.

I thought I would end like I did in my last post, with quotes from famous figures, this time that have faced anxiety. I, personally, find this very helpful as it emphasises the fact that you are not alone:

“The tough times, the days when you’re just a ball on the floor—they’ll pass. You’re playing the long game, and life is totally worth it.”- Sarah Silverman

“I openly admit to having battled depression and anxiety and I think a lot of people do. I think it’s better when we all say: ‘Cheers!’ and ‘fess up to it.’Lady Gaga

“I have anxiety attacks, constant panicking on stage. My heart feels like it’s going to explode because I never feel like I’m going to deliver, ever.”- Adele

“Even when you know you want to do something, know that it will be good for you, that you’ll enjoy it when you’re doing it, the anxiety is telling you a different story. It’s a constant battle within yourself.”- Zayn Malik

“We have a lot of anxieties, and one cancels out another very often.”- Winston Churchill

“You think of something and it just seems too much, too hard. That’s how it manifested in me.”- Glenn Close

“If I don’t get sleep, I found that I get really bad anxiety”- Ashley Benson

“(Slow breathing) is like an anchor in the midst of an emotional storm: the anchor won’t make the storm goes away, but it will hold you steady until it passes.”Russ Harris

“Physical comforts cannot subdue mental suffering, and if we look closely, we can see that those who have many possessions are not necessarily happy. In fact, being wealthy often brings even more anxiety.”- Dalai Lama

“It’s sad, actually, because my anxiety keeps me from enjoying things as much as I should at this age.”- Amanda Seyfried

“As I got older, I did experience anxiety, doubt, judgment, and it’s so easy to lose yourself for a second.”- Jennifer Lopez

 

I hope you found this post interesting!

 

Chloe x

 

Once again, the National Tremor Foundation website:

http://www.tremor.org.uk

Acupuncture, Hypnotherapy and Meditation

‘You should sit in meditation for twenty minutes a day. Unless you’re too busy, then you should sit for an hour’

 

These past few weeks I have been trying to find a new method to deal with anxiety/stress. I’ve been testing a variety of different suggestions as well as researching possible new ones to consider. I thought I would run through the three main ones I have tried and let you know how helpful they have/ haven’t been:

1.Acupuncture

When I first tried acupuncture I wasn’t entirely convinced that it did anything; I thought, perhaps, it was a placebo effect and someone was sticking needles in me for no reason. However after trying it for 6+ weeks now, I have to say I definitely have noticed a difference, especially immediately after the sessions.

I mainly have it done in my ears and on my head, which sounds terrifying at first, but trust me- it’s not! After having gone to 10 + sessions of it, I’ve just gotten used to it. In fact, some of them can be quite relaxing- which is a completely strange feeling, considering I’ve been terrified of needles for as long as I can remember.

Before starting acupuncture I wasn’t aware of its history, uses or popularity. It’s just after researching it that I have become aware of how useful it is as well as how essential it is to some people’s lives. I was shocked to see how many acupuncture points there are on the ear alone never mind the entire body:

ear acupuncture

Acupuncture derives from Chinese medicine and it is their belief that each part of the body is connected to another and by putting needles into it you can relieve said other part. For example if you were suffering from a cold they could put a needle in the part of the ear labelled 23 (on the diagram above) and that should help to give some relief to the lungs and therefore help with your cold symptoms.

Although I think it is something that is useful for my anxiety, it is something that I had to have multiple times before I found there was a great effect (most likely due to the fact that I was concentrating on the needle part too much.) But once I got over that, I did find that I was immediately relaxed. So if anyone is wanting to try it, I would suggest giving it a chance for a few sessions and don’t just give up if it’s not working after just one or two.

 

2. Hypnotherapy

I have to be honest here; hypnotherapy is something that I haven’t tried in the last few weeks but rather approximately 6 months ago. However, I did think it was a method of relaxation that is not commonly discussed and thought this would be the perfect opportunity to talk about it and its effects.

I did 4 sessions of hypnotherapy and have to say my reaction is very mixed. The first couple of times I went, I felt very relaxed but didn’t think I had been hypnotised. Although it is impossible to tell because that is the whole point of hypnotherapy, for the hypnotist’s suggestions to just naturally come into your life. I did think the third time something might have happened because I felt odd when I ‘woke up,’ but again I can’t be sure, I could have just been quite sleepy. The fourth time for me was the most effective as it made me feel the most relaxed. Although I’m not sure if this is good reflection on how the hypnotherapy actually was but rather how calming the hypnotist’s voice was.

Overall, even though I don’t think it had much of an effect on me, I know it helps thousands of people around the world, so it is always worth giving it a go if you know you are susceptible to that sort of thing/ like the idea of it.

3. Meditation

For me, personally, meditation was the method I was the most sceptical about yet have found the best results from it. I have to admit (like with the other two methods) I didn’t really feel anything the first few times I did it- I just felt like I was closing my eyes and just daydreaming about nothing. But after doing it 3/4 times a week for 6 weeks, I felt myself gradually getting into that meditative state that everyone talks about. For me, it was quite scary. It was a feeling I’d never felt before and if I’m honest I found it truly terrifying. The first few times I managed to get into it, I woke myself out of it because I found it too overwhelming. Eventually, after doing a lot of research, I decided to just go with it to try and see what happens and once you get past the initial overwhelming feeling, it becomes incredibly relaxing. I usually do it for about half an hour at a time and find that I am really refreshed after it, sort of like giving your mind a rest for a while, so it can calm down. And contrary to popular belief you don’t have to be sat in the famous lotus position to meditate- many people just do this to maintain the right posture (you’re not supposed to have a slouched back when meditating as it can, apparently, lead to your mind wandering.)

meditation_sun

The more research I did into meditation, the more interested I got. I was fascinated to learn it had been around since at least 5000 BC (this was the first known recording of it.) To me, its incredible longevity just proves that it actually works and is doing something to calm down the brain. I mean, if people have been using it for over 7000 years, surely something is right. I also found out how popular it is with the majority of Asia. I already knew it was big because of its association with Buddhism but I didn’t quite understand how big it actually was. It is so imprinted into the routine of many in south East Asia, that it is common practice to have a ‘meditation break’ in their workplace. It is believed that meditation helps both the physical body and the mind- it is even said to help the immune system!

I was also surprised at how many celebrities practice meditation on a daily basis. I thought I would include some quotes from a few to give more insight on the effects that it has on people. I struggled to narrow these quotes down as there are so many celebrities who do it and I wanted to include as many as possible:

“In moments of madness, meditation has helped me find moments of serenity”- Sir Paul McCartney

“After your morning stretch — which everyone should do — meditate. You don’t need to be able to levitate. You can just do it for 30 seconds. I leave my body and look at myself, like, ‘Ru, what do you want to do today?’ And I say, ‘Let’s do something.”- Rupaul

“Meditation is helping you to tap into something that’s already inside of you… that’s you, in essence. That’s something that was super-empowering for me once I grasped that.”- Cameron Diaz

Now I meditate twice a day for half an hour. In meditation, I can let go of everything. I’m not Hugh Jackman. I’m not a dad. I’m not a husband. I’m just dipping into that powerful source that creates everything. I take a little bath in it.”- Hugh Jackman

“The more man meditates upon good thoughts, the better will be his world and the world at large.”- Confucius

“Twenty minutes, you just notice the difference! When I get lazy and don’t get it in, I can feel a difference in the day. So I try to meditate first thing when I wake up.” Jennifer Aniston

“I meditate before going onstage – it helps me focus.”- Harry Styles

“The personal experiences that I learned from meditation have helped to change the way I live my life by modifying my perception of myself and of others.”- Keanu Reeves

 “Meditation was a turning point for me. It helped me deal with a lot of stress and has given me a lot of relaxation.”- Mike Love

“I meditate every day. I do it in the mornings for about 10 to 15 minutes. I think it’s important because it sets me up for the rest of the day.” Kobe Bryant

 “If every 8-year old in the world is taught meditation, we will eliminate violence from the world within one generation.” – Dalai Lama

These are just a handful of hundreds of quotes from celebrities from now and throughout history that support and endorse the use of meditation within daily life. I find it all incredibly inspiring and I hope you do too!

I thought I would end with a favourite meditation quote of mine:

Buddha was asked, “What have you gained from meditation?” He replied, “Nothing! However, let me tell you what I have lost: anger, anxiety, depression, insecurity, fear of old age and death.

Thank you for reading,

Chloe x

Once again here’s the link to the National Tremor Foundation:

www.tremor.org.uk

New Year Reflection

“We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year’s Day.”- Edith Lovejoy Pierce

To say 2017 was a tough year for my family would be an understatement. It wasn’t just tough, quite honestly it was horrendous. At times upsetting and at it’s worst, devastating. There were a few glimmers of happiness, mainly in the first half of the year and towards the very end but overall it was horrible. I am so glad that it is over and am only thinking positively towards the future and what 2018 may bring.

Mostly, 2018 year will be about my sister, most importantly, making sure she is able to have a full and healthy life whilst also achieving the goals she had before she got ill. This is not only essential but also imperative in order to ensure she is happy. For those of you who don’t know, my sister was diagnosed with a severe muscle weakness disorder called Myasthenia Gravis in December 2016. It affects all the muscles in her body, particularly her legs and arms. This means that (for example,) at times, she struggles to walk or stand for long periods of time. I won’t go into much detail on it now, as I want to dedicate a blog post to it in the future. Just know, it is a debilitating condition that can be life changing. My sister is my absolute world and it is genuinely horrible to see her go through such a tough time at such a young age- missing out on experiences everyone else her age is going through. Put simply, it’s heartbreaking. For anyone who has Georgia on Facebook she wrote an emotional, informative and personal post on being diagnosed with Myasthenia Gravis in July 2017. I would urge all of you to read it as it is eye opening and very well written:

 

I also thought I would include a video covering the basics on Myasthenia Gravis, for anyone who is interested:

 

2018 will also be about trying to find the best way possible to deal with anxiety. I have already explored (what feels like) hundreds of ways to deal with anxiety but I am yet to find the right one/ combination. I have recently started going to acupuncture on a regular basis and although I haven’t been doing it for that long, I really do feel like it is having a positive affect. However a couple of weeks ago, I had another panic attack that I, at first, thought was a heart attack again. However, this time I was able to recognise the symptoms and I now know how to control it (to an extent.) Although it is still the most terrifying feeling I have ever experienced, I feel like I am making progress. You can prepare for feeling nauseous and dizzy. You can prepare for feeling as if you are going to pass out. You can prepare for heart palpitations. You cannot prepare for the impending feeling of doom that comes with it. This feeling is not just ‘I feel extremely unwell’ or ‘my breathing has become more difficult.’ This feeling is ‘I am about to die, everyone is about to die and the world is going to end right now’ and there is genuinely no other way to describe it. If you think I am exaggerating this a well known documented characteristic of having a panic attack:

Panic attack definition

After having this second panic attack, I now know the symptoms I have leading up to it- which is one positive to come out of it. Annoyingly, it seems to build up over a 12 hour period ish- so it looks like a full day is going to be ruined leading up to them. Knowing how to breathe properly when you have a panic attack is the most important thing and I am aware that sounds incredibly stupid but it is true. For anyone who doesn’t know how to get through a panic attack, I have found the best way is to breathe in for 4 seconds, hold the breath for 4 seconds and then breathe out again for 4 seconds- I repeat this non-stop until it is over. This is something that my dad taught me to do and I have found it to be the most effective method to control it. Unfortunately there is no immediate cure to panic attacks so you just have to get through them in the best way that you can.

I hope as well that I can also raise awareness for Essential Tremor in this New Year. It is so important to me to be able to draw attention to ET and the overwhelming effects it can have on someone’s daily life. Being a condition that hardly anyone has heard of, I really want to make as many people aware of it as possible.

So, here’s to 2018… I’m looking forward to a year of new beginnings and happiness- I hope you are too!

 

Chloe x

 

Here is the official Myasthenia Gravis awareness site, if anyone wants to learn more about my sister’s condition:

https://www.myaware.org/

Also here is the National Tremor Foundation site, if anyone wants to learn more about Essential Tremor:

http://www.tremor.org.uk/

 

 

Airports, Seizures and Ambulances

I feel like this week I’ve experienced every emotion it is possible to experience in such a short period of time.

This week started off amazing. I was going on holiday with my mum to Tenerife for 2 weeks and I was so excited. It was supposed to be a time to relax and to just generally have some quality time with my mum. I wasn’t actually supposed to be going in the first place, but my step dad (very kindly) gave up his spot because he thought I needed the holiday more. Ever since I got back from Germany, I’ve been organising everything for Tenerife; sorting out holiday clothes (which is genuinely very hard considering it’s winter,) buying books and finding sun cream etc. I literally had everything sorted and ready for 15 days relaxing in the sun and I genuinely was so happy and excited for it.

The morning of the flight to Tenerife we got up at 4:30am and honestly I didn’t feel that much different to usual. Everything was packed and organised so all we needed to do was check our bags in and we’d be on our way. When we got to Manchester airport I still didn’t feel that anxious, I was just as apprehensive as I usually am before going on a flight and considering I’m not usually a nervous flyer, I wasn’t too bad! Going through security was a bit more difficult than usual on account of the fact it was incredibly busy for 5:30am on a Tuesday morning. The security staff were shouting and there was a 45-minute wait but again, nothing different to usual. The only time I was anxious going through security was when my bag got pulled aside as I had forgotten that lipstick was classed as a liquid and had left it in my bag and even then I was only worried because they said we would have to wait another hour in the queue before I could get it back. Luckily, the security woman who went through my bag was extremely nice and let me through as she saw it was a genuine mistake.

Going through duty free I was actually quite relieved after going through that security dilemma. I was just hungry as I had only had an apple before leaving the house but we were on our way to eat anyway so I didn’t really give it a second thought. Just before we got to the lounge, my mum decided she wanted to go to duty free again to get a present for my sister and asked me to sit on a bench and wait with all the bags. The next ten minutes I don’t have a great recollection of. I remember sitting down and then checking through my bag to ensure I had everything. After this I remember my arm just going limp all of a sudden and my phone falling out of my hand and hitting the floor. I specifically remember my last thought being ‘why did I just drop my phone,’ before I blacked out.

I had two seizures. It still doesn’t feel real writing it, but I did. I only know what happened because of the people who happened to be around me at the time told me once I came round again. Apparently everyone turned around when they heard my phone hit the floor and then I proceeded to fall back where I was sat (for anyone who hasn’t been to Manchester airport terminal 1, they have these weird seating areas that are like waves- I really don’t know how to explain it so I’ll just insert a picture!)

manchester-airport-terminal-one-waiting-and-retail-areaengland-uk-hdm1j3.jpg

I know it’s not the best image, but you get the picture. Anyway, I fell back and proceeded to have a seizure for approximately 2 minutes. The people around me were amazing; they put me in the recovery position on the bench and generally comforted and looked after me. My mum, at this point, was still in duty free but had looked over at me to check where I was sitting. She then noticed I was lying down on the bench and there was a crowd of people forming around where she had left me. She dropped everything she was carrying at the time and ran over to me just in time to see the start of my second seizure. I can’t remember any of this at all. After dropping my phone, the next thing I remember is seeing someone putting a privacy screen around me and also being really confused as to why there were random strangers holding my hands.

It was really weird coming round after I had my second seizure. I can honestly say it was like that bit they usually do in films where someone is coming around after having an operation and at first everything is all blurry and they can only see shadows and outlines and then it gradually gets clearer and clearer. I also remember the voices sounding like they were really far away and it felt like it wasn’t really happening to me- an out of body experience if you will.

I just wanted to say a huge thank you to the two women from Jo Malone who were the first people to reach me and made sure the paramedic was on their way. Also to everyone else who helped, especially the paramedic who was incredibly nice to me. After my 2nd seizure I remember trying to sit up and I felt incredibly sick and dizzy and repeatedly telling the paramedic that ‘I was going to faint’ to which his response was always either ‘no you’re not’ or ‘that’s why you’re going in the ambulance.’

After about 15 minutes the ambulance was ready and I was rushed down to the tarmac where it was waiting. I once again received a police escort off the site in an ambulance. I hope to god the police did not recognise me from last time because at this point I swear I must have some sort of record for the most ambulance escorts off an airport in the shortest amount of time (2 times in under 2 months if you’re wondering.) This time I went to Wythenshawe A & E, which was just as nice as Leighton and the staff were just as friendly. They did lots of tests on me (specifically lots of blood tests as my blood kept on clotting, which was awful considering anyone that knows me knows I am absolutely terrified of needles!) However they have yet to say what they think caused it and I’m still having lots of tests done to determine the trigger.

I feel a lot better now and haven’t had another seizure since, although they have said I need to stay relaxed in order to prevent another one. Obviously I am very disappointed that I haven’t been able to go on holiday because I am currently ‘not fit to fly’ until they find out what caused them- although I am more disappointed for my mum than anything because I know how much she was looking forward to it. Personally, I’m just glad that it happened before I got on the plane and not part way through the flight!

Thank you for reading!

 

Once again, here’s the website address for the national tremor foundation- I’d really appreciate it if you had a look!

www.tremor.org.uk

 

Growing up with Essential Tremor

Again, I wanted to say thank you for the amount of support I have received for this blog- I really do appreciate it and I genuinely can’t believe how many people are actually reading it! I hope you’re all learning something new and at least find it a little bit interesting! 

I’m not going to sugarcoat it, growing up with Essential Tremor was extremely tough. It wasn’t so much the tremor itself but rather knowing that I was always going to be different to my peers; I was never going to be ‘normal’ like them… I think that was and still is the hardest thing about my condition to accept. It is a strange concept ‘normality’- what actually is normal? And who has society decided is the perfect ‘normal’ human? Because I don’t know and my 7,8,9,10 year old self-etc didn’t know either… all I have ever known is that it is not someone who has a permanent uncontrollable tremor.

And why do I know this? Because society and the media have told me so all of my life. For instance: I remember being 13 years old ish and watching my favourite show at the time, 90210. This was a show that I loved and would watch religiously every week. This was until one week I, naively, sat down to watch it, expecting the usual American high school drama, however I was instead faced with the first reference to Essential Tremor I had ever heard on TV… and it wasn’t good. Having just being diagnosed with the condition, I knew pretty much everything about it; what it was, where it would affect me and, naturally, which celebrities have/had it. For anyone who has Essential Tremor, there is one particular celebrity that we look up to; Katherine Hepburn. If you don’t know who Katharine Hepburn is, she is consistently ranked as one of the top 10 actresses of all time and is seen as an icon of Hollywood. Here are some pictures for reference:

     

Anyway, I know it appears that I have digressed quite a bit but trust me; it will all make sense in a minute. Katharine Hepburn, as well as being one of the most successful actresses that has ever lived, had Essential Tremor. She developed it later on in life and it is therefore apparent in some of her later work, such as ‘On Golden Pond,’ where you can clearly see the tremors in her hands and head. Additionally, it was also very apparent in her voice and this is where 90210 comes in. The episode in question is season 3 episode 7 ‘I see London, I see France…’ (Yes I did do my research.) In this episode one of the characters is hosting an awards show and is having technical problems with his microphone and makes the following “joke:”

‘There’s some reverb on my mic… I’m worried I sound too much like Katharine Hepburn.’

The character does this whilst simultaneously mimicking the voice of someone with Essential Tremor and by extension mimicking someone with a disability. The other characters in the room proceed to laugh at this comment and it is seen by all as a light-hearted joke about someone with a disability- right? Well my 13 year old self certainly didn’t think so, in fact I found it extremely offensive and to be quite honest actually quite distressing that a TV show that millions of young people would watch could make fun of someone with a neurological condition that they have no control over. The fact that the other characters laugh at it, in my eyes, makes it seem as if it is ok… it is ok to mock someone with a disability just because they sound different to you. Katharine was an inspiration to many across the world and she should certainly be remembered for more than just the tremor… it’s not fair. The tremor doesn’t define us nor does it control us, it only makes us stronger and more sympathetic to people living with disability all over the world.

You may be thinking at this point ‘Chloe, don’t you think you’re overreacting?’ Actually no, no I don’t. As a 13-year-old girl who had just discovered she had a progressive, uncontrollable tremor that there was no cure for, the last thing I needed was for it to be mocked on one of my favourite programmes. To me, it was as if the show was making it acceptable to make jokes about people with disability and that in itself is, not only extremely worrying, but should never be ok. Don’t get me wrong I do try and make light of my condition as much as possible, mostly because it makes it easier to deal with, but people who have an influence over us, and especially over children, should try to use their status for good: i.e. supporting people with disability rather than making fun of them.

Another slight digression, but this is what I found extremely worrying in Donald Trump’s presidency campaign. He literally made fun of and imitated a man with a disability and was still elected President of the most powerful country in the world. What message is that giving to everyone else? It’s ok to make fun of people with disability because look at Donald Trump, he did it and he’s now the most powerful man in the world? I’m sure I speak for people with disabling medical conditions everywhere when I say that this is extremely worrying and is not how we want to be seen. We are a lot stronger than you think.

Needless to say I boycotted 90210 for the rest of the series. Although I have focused on 90210 for the purpose of this blog post, there are many other programmes/films that have made similarly distressing comments about people with tremors… I won’t bore you with a list but I’m sure you’ll find some yourself if you look out for them.

I hope you enjoyed this blog post and didn’t find it was too long/ had too many rhetorical questions in it haha 🙂

Here is the link to the National Tremor Foundation if you want to find out anymore information:

http://www.tremor.org.uk

🙂

How does Essential Tremor actually affect me?

 

Once again, I wanted to say thank you for the support for my last post- I really do appreciate it. This blog is going to be more about my own personal daily struggle with Essential Tremor.

I’ve been thinking for a while about how I could actually portray my struggle with Essential Tremor and I’ve, finally, come to the conclusion that this can only be achieved through video. Therefore, I decided to get my sister (thanks, George) to film me writing/ drawing both before and after taking my medication to show both how bad the tremor is and also how medication affects it.

This video is extremely personal to me, as I’ve never shown anyone outside of my immediate family my tremor before. It is still completely alien to me that everyone now knows about it, as it is something I have kept to myself for the majority of my life. But now everyone knows I have it, I might as well show how bad it is and truly portray it, to its full extent as I believe it may help other people with the condition, who are still coming to terms with how to cope.

(and yes… yes I did create a Youtube channel just to upload this one video)

P.s I know this video is extremely poorly edited, just try and look past the editing 🙂

As you could probably tell from the video, my tremor before taking any medication is significantly worse than it is after taking any. This was quite a bad day for my tremor but there have been days where it is much much worse. And as the worst part of my body for my tremor is my legs, it can sometimes be extremely challenging to walk and more specifically to walk down stairs as well as hills (because you are putting so much weight/pressure on each leg at a time.)

The medication that I take is not specifically designed for Essential Tremor, therefore I take a variety of medications that are for other conditions. For example: in the past I have taken medication for people with Parkinson’s as well as medication designed for people with epilepsy. It still astonishes me to this day that Essential Tremor is one of the most common neurological conditions in the world and yet there is no medication specifically for it. This means that in a lot of cases the medication given to Essential Tremor patients doesn’t actually work. This has happened to me a few times (I have tried a lot of different types of medications to ease the symptoms) but there is always something else/ new to try.

This is why it is so important to me to raise awareness for this condition and I would urge anyone who is interested to visit the National Tremor Foundation website for further information on the disorder:

www.tremor.org.uk

Thank you for reading 🙂