DYSTONIA: FIRST WHEELCHAIR AND REACTION'S

I was five when the inevitable happened, I had to accept I could no longer walk anywhere outside the family home, I could hardly get up and down the stairs some days so that was the start of the wheelchair years.

   I remember my first ever wheelchair measuring at Lancaster Royal Infirmary, I felt so defeated whilst getting measured up for this chair, the woman what was doing all the measurements was such a patronizing person she was saying stuff like " so why can't you walk " and " you looking forward to your new wheelchair ".

To some people reading this you might be thinking this was a freedom ticket and I could finally get out and go places with my family but that was the last thing I was thinking!

It took 8 weeks for my wheelchair to come I did not pick any cool colors or any items which you could have added i just chose a standard black wheelchair, why would I want to stand out as i already stood out as I wasn't walking like the rest of the place.

Half a year after getting my wheelchair we went on holiday to Cornwall,Devon for a week and by then I could not walk even to the end of the drive way so I was wheelchair dependent. My dad always pushed me round I don't think my Mum particularly liked pushing a wheelchair but my dad did not mind as long as we was together.

The worse thing I have ever heard and it is still the worst thing I have ever heard was when we was on that holiday in the town center when this old women started shaking her head and tutting at me, By then I was shaking and was moving around a lot and i was getting more uncomfortable sitting in my wheelchair and I will always remember she came up and said to my dad "Do you really think someone like that should be out in public" My dad hit the roof at this women and loads of people started to notice there was some commotion and after a long argument things cooled down and she walked away. I would love to meet that woman now and give her a real piece of my mind to what I think of her.

And that was the first of many comment's and stares I was about to get for the next 7 years.

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DYSTONIA GETTING WORSE AND SO WAS THE BULLYING: AGE 4

The bullying was getting far worse every day i struggled into school by this stage my left leg was also trailing behind me, to be honest my full body was trailing towards the end of St Josephs as i was emotionally tired of all the hurtful comments i was receiving every hour of every school day.

I could not even go to the teacher anymore as even they thought i was making all this up and was just doing it for attention at school. Who in this world would get bullied just for the sake of it ?

Certainly not me i was always a happy child and all i wanted to do was to play with my buses and trucks and any other kind of vehicle but when the thought of going into that Horrible school each morning sent me to tears and that was the first time I knew what fear was.

I remember the school disco I went to at St Joseph's and it was terrible it was my first experience of loud music and flashing lights and I was so scared all the way through it, My main goal was just to get through the 2 hours without the bullies seeing me and getting home! I had to go as it was in school time, the walk down the the school hall was down about 100 steps as our school was built on 2 different sites which was awful every time we had to go down to the hall for anything as by this stage i was really struggling to walk even a few yards. I always will remember walking down them steps to the disco that afternoon and falling over, I was at the back of everyone as i was the slowest and i fell with a almighty thud down to the ground I scraped all my hands and my knee, No one even knew i did it and I didn't cry as by that stage I was used to falling over all the time as I was getting very unbalanced.

About half way through the disco I remember starting to cry, I think I just had enough of it all and broke down. I even remember what song was playing at the time it was Cher Do you believe in love: Ever since I have always held back the tears when that song is played as that moment was one of the worst moments in my life.

I WILL BE BACK WITH ANOTHER STAGE IN MY LIFE VERY SOON:

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DYSTONIA EXPLAINED

There are many types of Dystonia, I have Generalised Dystonia which effects both my arms and legs, for most of my childhood up until 12 i was mostly wheelchair bound with spasms happening everyday.

Throughout my childhood i was passed from hospital to hospital with doctors having no idea what was wrong with me, i even got accused of making it up for attention which effected my confidence and i didn't have much in the first place.

We live in a world where everyone expects everybody to be perfect but the reality is NO ONE IS PERFECT we all have problems and no one should be put down about having a condition or a disability! 

Most of my childhood doctors kept saying i had Cerebral Palsy as i walked very hunched over and with my left arm always behind my back, We first started noticing this when i was around 3 years old and started pre-school and i was starting to limp and walk different to all the other children. 

It was not until i was 11 that we found out the condition i had was actually Generalised Dystonia and i was sent to Frenchay Hospital at Bristol which is around 220 miles from where we live. It was there where a Dr Steven Gill now Professor talked to me about a fairly new operation called Deep Brain Stimulation where they open your head and insert a set of Electrodes down into your brain and then feed the wires into a box ( a bit like a pacemaker ) into your chest. At the time i was one of the youngest to have this UK major operation performed as they couldn't wait as my spine was arching over more and more. 

I remember going down to Bristol to have the operation and i was excited not one bone in my body was nervous as i knew this was the only chance i had of improving my life, I had a frame fitted in the first operation which took around 6 hours to complete then i had to wear the frame over night and that was one of the hardest nights i've ever lived, The frame is bolted onto your skull and you can feel a weight on your head all night you couldn't move your head and i struggled to even take a sip of water.

The next morning i went down for the Operation and 8 hours later i was up in recovery with stitches in my head and chest and in a lot of pain. Over the next few weeks i started to see a improvement in my movements and walking gradually got a little better then after about 9 months i was not relying on my wheelchair for the first time in my life. 

It worked so so well for the first 2 years until i needed a routine battery change and that was when things started to go wrong as the operation didn't go to plan, i was back to square one struggling to even make it out of bed some days and my back is spasm all the time. I had 7 more DBS operations down in Bristol but not much difference was made during a 5 year period. 

I demanded to Move my treatment away from Frenchay and i was put under a MR Julien Evens at Salford Royal in Manchester where he performed my last operation on the 12th October 2013. I had all the leads taken out and moved to my right side of my chest and head and i am showing signs of improvement, I still take daily medication of Clonazepan and Baclofen which helps with my shakes and Anxiety. 

The thing what helps me the most is not the drugs or the operations its my Partner Hollie, She's been absolutely fantastic since we met on the 4th January 2013. I was so nervous meeting her as i was at one of my most shakiest and unstable points of the last few years but she just did not even notice. Throughout 2013 we had a lot of hard days with my dystonia getting the better of me to the point of i had to be shaved by her and even washed by her. She's just the most amazing women to have come through all that and be still with me its amazing and i'll never forget how she got me through without a doubt one of the hardest years of my life. Even on bad days and we go out and i'm shaking or walking funny she just holds my hand and does not care who looks or stares. Since meeting Hollie i have gained so much confidence its untrue and i've found a totally different side to me which i didn't think i had. 

Hollie Wilson Thank you for everything I Will Love You Forever And Always 

I hope this Blog helps anyone who has Dystonia or knows of a person with the condition.

Any questions please feel free to comment or tweet me at @myroylelife

HOW I HAVE DYSTONIA AND HOW I NEARLY DIED!

I thought I would go back to the start with this blog, I was born on the 18th January 1994 in Lancaster Infirmary.

I did not breath for over 9 minutes and I was in a very critical condition as I got stuck coming out from my mother my left arm got twisted and they pulled it out and this is why I have Dystonia.

I was in intensive care for over 3 weeks and everyday was a real battle to stay alive but i was a tough little bugger and i was not going to give up that easy.

The doctors and the so called "experts" said that I would never ever walk and I would be in a wheelchair for all of my life. My dad bless him refused to listen to any of the doctors and 2 years later I took my very first steps and my dad said he cried his eyes out and knew I have proved the experts wrong and started to walk.

     I will be going in and out of my life as I think this will make the blog more interesting as I will be talking about different years

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WHEN DYSTONIA TOOK OVER MY LIFE AND THE BULLYING STARTED AGED 3

Dystonia took over my life and started to ruin my childhood when I was aged 3, I had just started pre-school just at the bottom of our street, My brother, who is 10 years older than me went there and he loved his time at St Josephs but it was a living nightmare when I started there.

The first sign there was something wrong was one day I was playing in the play ground and I started trailing my left arm behind me when I was walking and I started to have a limp in my left leg which was soon caught the eye of some of the teachers who were always on playground duty. 

It got worse as the kids in my class started to notice that I was not like all the other kids in the playground and a group of 7 soon jumped at the chance to bully me. It started with just the odd shout across the playground then it started to get worse. I remember one morning I was struggling into school and in front of me all 7 of the group was copying me and they were walking with a limp and there left arms behind there backs. They were really started to take things to the next level as I started to deteriorate day by day.They surrounded me one day and started pushing me around and taunting me about the way I walked and held my arm. 

I will always remember on a Sunday night a TV program called 999 was always on BBC 2 and straight after it was finished it was my bedtime, I used to love that show but all the time I was at that school I was just in a trance watching it knowing that tomorrow was Monday and it was another week of torment and bullying. I used to go to bed and just lay there and cry myself to sleep as I dreaded the next day of school. 

We reported all this to the teachers and they just sat back and did nothing about it. They even called in my parents and asked them if I was getting looked after properly at home as they thought I was doing it for attention. Looking back now that must have been so hard for my Mum and Dad to hear as they always gave me the best and I was always looked after. My Mum and Dad was so upset they immediately took me out of that school and my living nightmare was over.

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MY SHAKES,SPASMS AND DYSTONIA

HI,

I have decided to blog about my condition before I start with all the funny stories and all the stupid stuff I have done in my life I thought i would write a little about Dystonia.

I have had a condition called Dystonia which I refuse to call a disability, everyone on this planet has a purpose and everyone can make a difference to the world and when people are labeled disabled people instantly treat them very different to anyone else which hopefully over the next few blogs who ever reads these will chance there minds on people who are a little different.

Dystonia is a movement disorder which effects your movements and your walking which can be very hard to live with but you have to carry on as like anyone you have your good days and your bad days, I have lived with my condition ever since birth so I have never known anything different over than having shakes and walking different. I will write a blog later on my birth and how things went wrong and how i ended up having my condition.

Dystonia effects me everyday of my life and I wont lie and say it's nice to live with but you have to grit your teeth and get on with life, I struggle with everyday tasks such as making a cup of coffee or making anything which I could spill as I spill a hell of a lot of stuff everyday of my life, I will be writing a blog on my coffee spills in the next few weeks as I have a lot of funny stories about them.

I will also do a blog on what tablets I have used in the past and what tablets i am on now and how i think they have all been useless in aiding me and making my life better.

I have also just signed up on twitter so get in touch if you also have Dystonia or any condition
@MyRoyleLife

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WELCOME TO MY LIFE OF SHAKES LAUGHS AND PLENTY OF ACCIDENTS!!!!

Welcome to my new blog, all about my life, all the stupid things i get myself into and the accidents i have with all my shakes.

I will go in and out of my life as i write these blogs with very happy times and some sad times, but i think most of all i will tell you, all the shakey stories and all the silly stuff i have done in my 21 years.

The first thing you need to know that i have a condition called Dystonia which effects walking and movements which sometimes gets you down but i always find a way to carry on.

I have a great new family that has helped me through a lot in the 2 years i have known them, My finance is amazing her name is Hollie but she is my Denise. Then there is her mum and dad  - Jim and Barb, which are actually Stewart and Carole. If you have watched the royal family you would have guessed by now that we are named after all of them. Holl has a brother called Sam which is obviously Anthony.

I have some fantastic stories over the last 2 years about the royal family and there will be many more to come, I will be dipping in and out of my years with stories which i hope you will laugh at and will enjoy reading.

I love a good old moan and a whinge and no doubt i will be posting a few moaning blogs about people, tv shows anything really what i find annoying which goes on in my day.

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