About Me

Hello my name is James Sutliff ☺

On the May Bank Holiday of 2008 my life took a sudden, unexpected change. After a normal night out with friends, drinking the usual G & T, I returned home, went to bed as I usually would and slept well. I woke up as I normally would and then I started to feel a little unwell, I put this down to a hangover. I took a small nap, to wake up to something that changed my life in an instant. I found that my speech was badly distorted and slurred; thinking this would pass I carried on as I normally would do. A couple of days later the problem seemed to worsen, so a friend took me to the hospital, where I was admitted straight away. I underwent test after test, to the doctor’s confusion. On paper I was a healthy 24 year old man. Doctors were baffled by what had happened to me and could not finger point a cause or diagnosis. Still almost 9 years on I still have no clear cause why this has happened.

I was put under the care of a neurological specialist, whom I saw every 6 months, just to be prodded and poked at. A year had passed and although I still had my speech problem, I was carrying on my life as I normally would do….then the problem directed itself into my hands. I noticed that my thumb on my left hand was starting to become painful and tight and I found it increasingly hard to use, to the point where it eventually closed fully. Over time a couple of my fingers on both my left and right hands did the same. Working as a plumber by trade I found it increasingly hard to continue doing my job, I no longer plumbed as a living. Although I found it very hard going from a drastic wage decrease I found work as labourer. I work with a great team of lads and they help encourage and build my confidence each day.

Finally in the year of 2012 I was diagnosed with dystonia. Finally I had name to this thing that had been ruling my life for so long. I started to read up on dystonia – it is a debilitating disease that can affect your life completely, no matter how minor the symptoms.
My dystonia is treated with botulinum toxin injections and regular hand therapy. The combination helps to relieve some of my symptoms such as pain, stiffness/spasms and range of movement. I am able to grip gym equipment more freely, with a better range of movement; the toxin also helps to relieve pain during training.
Always being keen on the gym, I had always been in pretty good shape but I wanted to prove that my goals and dreams were still achievable, although having a disability. For the past four years I have dedicated myself to the gym. I am working hard to try and raise awareness for dystonia and also to help encourage anyone out there who may have disabilities, confidence or self esteem issues or anyone who generally wants to keep in shape14289825_10207079786577991_5226741626281818903_o

 

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51 comments

  1. i too am living with Dystonia, mine presents itself as cervical Dystonia. Was diagnosed 3 years ago but getting on with it makes better these days. Interesting that your symptoms started so dramatically overnight. I look forward to reading more blogs about your progress. I think you’ll be inspirational to many people, especially those younger ones. You’re living proof that you can achieve much despite living with Dystonia. Good luck.

    Liked by 1 person

      1. I’m on same boat. But recently I found into about tmj and dystonia connection. It seen to be working for many people. In my case I really want to try it but as a single mom who been out of work for about 5 years my income Is very limited. The treatment is about 10,000.

        Liked by 1 person

  2. My husband has Huntington’s disease. Many people with HD have chorea but many others (like my husband) have dystonia. The HD is horrid enough but right now the dystonia is what is making life miserable. I’m happy you found a treatment that helps you with the pain.

    Liked by 1 person

  3. Hi there ! Good to see some People With Dystonia can have Your lifestyle. My Dystonia staretd With Blepharospasms so my eyes have been closed most og the last 4 years. The muscles around the eyes are not working so I can`t open mye yelids without help form my fingers. I used to love workout sessions before this. I`d love to get back tehere again. My Botoxinjections does not work taht well and I`ve been tested on Levodopa, well it worked for 14 days. I was HUMAN again for 14 days.
    hM….now then, I will read Your blog and follow you . Greeting from Maya, Oslo,NORWAY

    Liked by 1 person

  4. I am living with dystonia for 15 years and I want to thank you for doing this blog and inspiring people, that living with dystonia does not stop you from living 🙂 good luck I look forward to reading more of your blog 🙂

    Liked by 1 person

  5. Well done James on your Blog raising awareness of dystonia and inspiring other people with disabilities. I have had cervical dystonia since about 2008 and am sending you my very best wishes.
    Mary

    Liked by 1 person

  6. I have a disability called spina bifida with which I am confined to a wheelchair. I found your story very interesting and made me stop and think that my disability isn’t and shouldn’t be a problem to me

    Liked by 2 people

  7. Thank you James for starting this blog. I and I am sure others on here know what it is like to have a normal life and wakeup with this mysterious illness at first. To wait years to figure out its name. I am glad you have kept fighting to do what you love. I was a model but have had to put that aside for now. You give me hope 🙂

    Liked by 1 person

  8. Awesome job James! Can’t wait to read more. You are an inspiration. I tell Jim all the time if you ever make it to the Southern US, I want to know so I can meet you.
    RR

    Liked by 1 person

  9. James,
    Your story of Dystonia is inspiring! You will lead others to find the strength to overcome their disabilities in a way to not allow their disability to own them, rather they own their disability.

    My story is similar to yours, in one week my life forever changed and there is not an answer of why. I have Dystonia and paroxysmal kinesigenic dyskinesia, which is another neurological muscle disorder. Like you, I have found my “new me” and control my disorders. It too changes my speech at times. When my speech really acts up people who don’t know me think I am from your side of the pond 😊. Daily it is hard to form certain words here and there. Mine is unique that it spreads throughout my body for moments then goes back to little twitches. I wish you all the best my dear friend with your blog! Cheers from California!

    Liked by 1 person

  10. James, I find your blog as another form of therapy 🙂 providing inspiration and motivation to continue living your own life no matter what cards are dealt. Thank you! I will be following 💕

    Liked by 1 person

  11. Hi, James…I am sooo impressed with how you have taken an horrible situation (I have jaw dystonia as well) and made it a focal point of motivation and inspiration instead of despair and defeat. Bravo, my friend.

    Liked by 1 person

  12. Hi james i have cervical dystonia with aquired nystagmus sometimes i struggle more than others coming from a small town it took yrs of frustrating pain and more frustrating was not given any answers to what was happening to me it has now started to affect my fingers and toes so is in short becoming more generalized you are doing an amazing job getting it out there james as nobody really understands unless they have it anyway much luv and keep the good work up x

    Liked by 1 person

      1. I myself have cervical dystonia wich has given me aquired nystagmus it took yrs for diagnosis and pain was awful i have recently noticed changes to my hands and feet glad that you are keeping dystonia in the public eye james because nobody even knows what the dam thing is usually its a foriegn country lol much luv keep the good work up x

        Liked by 1 person

  13. This has made me realize there is light at the end of the tunnel James, after 2 years I was finally diagnosed with Cervical Dystonia, and boy is it a life changer. Your blogs a great idea James it will certainly bring awareness to this condition. Well done 😊

    Liked by 1 person

  14. Hi. You are very inspiring. Great idea to set up the blog! I have generalized dystonia. It’s absolutely nothing against you or anyone else who has a disability but can still function at such a high normalcy when I say this, but my left hand is so tightly clenched shut. I got botox injections in that hand but it has made my hand so weak that I can’t even clip my own fingernails. I have had 2 brain surgeries and can no longer drive. I do my best to do as much as I can every day but I will never be able to anything close to what you do, so at times reading about what you can do can make people feel discouraged because we think we should be able to do what you do. We, or at least I, do not want pity. Dystonia afflicts me much different than it afflicts you so all I ask is that you remember those that are not as able bodied as you are. Best of luck with all your endeavours!!

    Like

  15. Thank you for sharing James and spreading hope. I too have dystonia and receive xeomin. I once thought I could not enjoy working out again nor really be able to physically do much. Now…three years after my diagnosis I just started going back to zumba and using a rowing machine. I look funny at times in class since I still can’t turn my head fully to my right but I am not giving up! I feel so much better when I exercise …. so thank you for being an inspiration. 🙂

    Liked by 1 person

  16. Great job, James. Very interesting to hear your personal story about how things started. We all have such different stories. Yours happened so fast. I lead a Dystonia Support Group in California and am always amazed at how strong & resilient people with any form of Dystonia can be, but, also, how life changing and devastating it can be. No matter, as you said, how mild the symptoms seem to be. You are awesome, buddy. Carry on.

    Liked by 1 person

  17. While I do not have this issue myself I thank you for going public with having dystonia .Good to hear you found A treatment which has helped manage the condition .

    Liked by 1 person

      1. James : I did read your story. BUT – you look too ( perfect ) to be ” disabled “. What about the millions of people who see your picture and have to just CRY about their condition . The visible PROOF, is that you are NOT disabled…..

        Like

  18. Hi James, I hope the people who are able to exercise get inspiration from you. I have generalised dystonia with upper motor neuron involvement. Long journey, mainly downhill, but I keep on keeping on! Carpe Diem! I wish you and your gorgeous wife well. My speech is pretty bad now, do you find it painful to talk? I do, hard to get a breath. Typical, as I’m a talker. My dad used to say I’d talk the hind legs off a donkey 😂

    Liked by 1 person

  19. You are such an amazing inspiration to me. I started the dystonia symptoms overnight just like you described. One night I felt awful in bed and my legs were tight and twitching. I couldn’t walk correctly that night and the following day, the world changed for me instantly. I’m sorry this happened to you too. You’ve made the best of it and you are such an amazing inspiration to all of us. Keep speaking out and sharing. Do it for all of us that suffer greatly and do not have the public eye. Big hugs from Kentucku!

    Liked by 1 person

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