dystonia

9 years on ….Β 

Hey everyone.

I hope you’re all doing well.

As this Sunday marks the 9th anniversary of when I had my first symptoms of Dystonia, I would like to talk about how much of a personal struggle it has been since being diagnosed and what such a life changing rollercoaster it has been.Literally with so many ups and downs, this has truly been a life changing experience.  

Looking back back I think and actually this still sticks with me now, the hardest knock was having to admit defeat and give up my career as a plumbing engineer, something I had spent many years working hard for and I was on an excellent wage and really settled in my work , which was going from strength to strength. Very rarely was I reliant on anyone or anything, I was financially  sound and totally dependant on me. It was great. 

I was playing semi professional rugby and my social life was great, one reason being I had no money issues, I was able to go out drinking and on holidays with my friends at the drop of a hat. Things were certainly more straight forward.  No issues ! No stress ! Plenty of money ! Life was good, really good and then BOOM, it all changed. Definitely something that has taken me years, to accept. 

I often hold back and miss out in social time with friends, stag parties, special birthdays you name it. This is something I truly miss, I miss the banter and good crack. My friends are great though, they seem to understand and many of them have supported me to ensure I don’t miss out, which really doesn’t go unnoticed. The holidays I go on are funded by my wife. Without her, I would of not been able to go on holiday, she is my true saviour and allows me the freedom to keep living and experiencing life, without having to miss out completely. I love to travel and experience different cultures, I think travel is one of life’s greatest gifts, it offers us freedom and I am truly lucky that my wife also has the same passion. Without it I’d feel pretty trapped, it’s my escape. 

With all that said I am proud to say I got through it and I am going from strength to strength both personally and professionally. It’s been a difficult and time consuming road. Strating from scratch and delving into a completely new line of work has been tough but it’s also been an exciting challenge and I am really excited for the future. 

I may not be mr money bags right now but let me tell you money certainly doesn’t buy you happiness, yes it definitely helps πŸ˜‰ but actually what makes me happy is far from financially driven. 

I know that each day I fight the biggest fight to achieve my goals and I am and will continue to smash the shit out if them. Life is truly what you make it and I plan to make mine truly amazing so watch this space. 

Let me tell you something though, that all of my followers and supporters are truly the ones that build me up each day, so thank you for that. I need you all and I am truly grateful for the strength you give me. 

With that said I want to wish you all a great holiday weekend. Be merry, have fun and be grateful for all that is good in your life. 

I hope you’ve enjoyed my blog.

Please feel free to leave your comments or any questions you may have. 

James Sutliff 

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My Determination and Recognition Has Got Me Where I’am Today.

Hi all,

Hope you’re all doing well? 

 First off I would like to apologise because I’v not done a blog for a few weeks. Good reason behind that because I’v had so much going on but in a positive way 😊. It looks like I’m going to Atlanta,USA for my new treatment, sooner rather than later 😱 the treatment I will be receiving is called TMJ Treatment. You can find out further information about tmj via the following link: TMJ Treatment 

You maybe wondering why I need to go all the way to USA? Well because I’v been so open about my Dystonia, showing the way I talk and the problems with my hands. Doing videos and posting them online, on all social media outlets, it reaches a worldwide audience. A nurse in Atlanta picked up my story, who also sufferes with Dystonia and contacted me saying about the TMJ treatment that ultimately cured her Dystonia. She then put me in contact with her specialist, who examined me in London. From this he explained that he can help me also and that’s how it’s all come about getting treatment at hispractice in Atlanta,USA.

 If I wasn’t so open, my story would never had been seen and this amazing opportunity would never of come about. My Dystonia could be cured after 9 long, agonising years. Literally how amazing could that be ??

I’v always said being an open book has got me where I’am today. Opening up to the world showing my struggles has shown how real I’am. It was just too easy to post a picture, with my muscles, tattooes and say I have Dystonia. 

Looking at the picture above would you think I had a Disability ?? 

To be honest I would look at that picture and think not a chance he has a disability, just look at him 😱. That would definitely be my response when I was younger. I’m the first to admit I was quite naive. 
My determination was to be raw and give people more of an understanding not all disabilities are visible, just like mine. By doing this I was getting a lot of recognition and respect from people with Dystonia because I was bringing a lot more awareness to this movement disorder. I’v had numerous interviews with magazines and online companies on my story, which helped by spreading the word and sharing my story with the world to see. All of my social media outlets were growing, Instagram, Facebook etc because all my posts were showing my victories and battles with Dystonia. It just seemed people were interested and loving my honesty. Amazingly enough over the 9 years I’v have been lucky enough to avoid trolling. This surprised me because my speech is so disorientated, it’s kind of an easy target for online trolls to pick at.
Fitness is my lifeline !! I use it to help me overcome my Dystonia physically and mentally. Companies in the industry was noticing that and wanted me to become afflicted with them. They include Skinny Chimp , UFIT Drinks , Udos Choice , Prep Perfect  , Heck Food and I’m being given an amazing opportunity by YourZooki to start blogging for them.

The moral of this blog is when you think times are hard and you think you’re getting nowhere, just find the determination within you and fight to get yourself out there. Never feel ashamed or embarrassed, believe in yourself. 

I would like to end with the quote.
“Success in life comes when you simply refuse to give up, with goals so strong that obstacles, failure, and loss only act as motivation.”
I hope you enjoyed this blog. I would love to hear your thoughts and opinions.
James Sutliff

Finally Some Hope πŸ™πŸ»

Hi all,
Hope your all doing well and are having a good weekend?
During this blog I wanted to talk about my recent appointment I had in London with a new Specialist, who had come all the way from Atlanta City,USA for work and a family holiday.
Well on the 9th March, I met Dr Patel at a London hotel in Kensington, so. That he could give me an assessment. Dr Patel specialises in Temporomandibular Joint Dysfunction, which is one of the contributing causes of Dystonic symptoms. 
When he was examining me he had noticed that my jaw  is out of alignment, potentially a defect that I have since birth but he thinks the continuous bangs to the head and concussions from rugby, may have made it a permanent fixture. I know my hands are affected but it’s all connected. 

​The videos I’m posting below are to show what he practices can and will help me. This is just a taster and hand on heart the results where amazing. I had improvement both in speech and hands. The hand video is very impressive. 

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​As we stated, this is only the start, I need a mouth guard to wear permanently and I maybe going to Atlanta USA for this but waiting on confirmation.

It’s going to be a long journey but I’m so positive it will work. It’s the most hope I’ve had in 9years. It’s nice and heart warming to have a specialist who wants to help and not being told by the usual Specialist to get use to it like I have been for years.
So there’s a bit of a moral behind this blog. If you are like me and are not happy with what you arebeing told by your Specialists, then don’t give up! I knew deep down my Dystonic Symptoms occurred from a simple explanation and I was right.

I opened up, I showed the world with videos and pictures my struggles,battles, determination and hard graft battling Dystonia physically and mentally.

If anyone is out there reading this blog and have been in the same situation as me where they have no real answers from Dr’s only you can make the change. Just be open about your problems or disability. Being open for the world to see maybe that one person could have the answer your looking for πŸ™Œβ€

We are in a society where sometimes we can only help ourselves in getting the answers we need and from my past experiences, being an open book πŸ“– goes a long way πŸ™Œ
I hope you enjoyed this blog, I would love to hear your thoughts or any questions you may have 😊