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Warriors of Dystonia
United Kingdom
Приєднався 21 січ 2020
Dystonia is a neurological disorder that causes excessive, involuntary muscle contractions. These muscle contractions result in abnormal muscle movements and body postures, making it difficult for individuals to control their movements. The movements and postures may be painful.
My name is Karl and I’ve had cervical dystonia since 2007. My head pulls to the left 24/7 and is often accompanied with a tremble too.
Warriors of Dystoniais a mixed media project that I've launched where people with dystonia or anyone who has someone in their lives effected by dystonia can share their personal experiences either on my website, Podcast or in video form.
If you wish to be part of this book project please feel free to contact me via WarriorsOfDystonia.wordpress.com or search Warrior of Dystonia on Facebook.
My name is Karl and I’ve had cervical dystonia since 2007. My head pulls to the left 24/7 and is often accompanied with a tremble too.
Warriors of Dystoniais a mixed media project that I've launched where people with dystonia or anyone who has someone in their lives effected by dystonia can share their personal experiences either on my website, Podcast or in video form.
If you wish to be part of this book project please feel free to contact me via WarriorsOfDystonia.wordpress.com or search Warrior of Dystonia on Facebook.
The Warriors of Dystonia Podcast - Shelby's story
In this episode of the Warriors of Dystonia podcast I talk with Shelby, who kindly chatted to me about her experience of living with Dopamine responsive dystonia (dopa responsive), which she was diagnosed with at the age of seven.
For more information about the Warriors of Dystonia project head to - warriorsofdystonia.wordpress.com/
To buy the Warriors of Dystonia book (either printed or eBook) head to - www.amazon.co.uk/Warriors-Dystonia-Experiences-neurological-condition/dp/B09ZD2TW7G/ref=sr_1_1?crid=37796T001FMO&keywords=warriors+of+dystonia&qid=1658665753&sprefix=warriors+of+dystonia%2Caps%2C80&sr=8-1
ALL profits from the sales of this book go to Dystonia charity and research!
For more information about the Warriors of Dystonia project head to - warriorsofdystonia.wordpress.com/
To buy the Warriors of Dystonia book (either printed or eBook) head to - www.amazon.co.uk/Warriors-Dystonia-Experiences-neurological-condition/dp/B09ZD2TW7G/ref=sr_1_1?crid=37796T001FMO&keywords=warriors+of+dystonia&qid=1658665753&sprefix=warriors+of+dystonia%2Caps%2C80&sr=8-1
ALL profits from the sales of this book go to Dystonia charity and research!
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Відео
The Warriors of Dystonia Podcast - Sara Jane's story
Переглядів 642 роки тому
In this episode, Sara Jane talks candidly about her experiences of life with Cervical dystonia, sharing the implications of the condition on her career as well as some of the lesser spoken ways that this type of dystonia can affect most people. For me, talking to someone who has the same condition was very cathartic as it was the first time I had ever spoke to someone who was fighting an almost...
New podcast recorded, Warriors of Dystonia book on Amazon and Kindle soon!
Переглядів 452 роки тому
New podcast recorded, Warriors of Dystonia book on Amazon and Kindle soon!
The Warriors of Dystonia podcast - Kate's story
Переглядів 522 роки тому
In this episode of the Warriors of Dystonia Podcast Kate took the time to share her experiences of living with benign essential blepharospasm, which began four years ago. Benign essential blepharospasm is a rare form of dystonia that affects the muscles around the eyelids and results in involuntary eye spasms and can cause the eyelids to twitch, flutter or blink uncontrollably. In some cases, s...
Redecorating my daughter's rooms. Upcoming WOD plans (Warriors of Dystonia vlog 8.4.22)
Переглядів 102 роки тому
Redecorating my daughter's rooms. Upcoming WOD plans (Warriors of Dystonia vlog 8.4.22)
The Warriors of Dystonia Podcast - Tim and Ellis's story
Переглядів 1532 роки тому
In this episode of the Warriors of Dystonia Podcast I had the pleasure of chatting to Tim, a father of a boy named Ellis, who has developed generalised dystonia. Tim was kind enough to share their journey and experiences. Check out the website for more information about the Warriors of Dystonia project or to pick up a copy of the book - warriorsofdystonia.wordpress.com/
New dystonia awareness tshirt design and podcast release imminent! 16.03.22
Переглядів 332 роки тому
Grab a cup of tea and get comfortable, here's me rambling about my tshirt design, people exploiting illness to sell tshirts and podcast release imminent and needing a new bathroom in my house. Have a nice day and stay awesome 💙 www.redbubble.com/shop/?query=Warriors of Dystonia&ref=search_box #dystonia #cervicaldystonia #dystoniaawareness #dystoniawarrior #WarriorsofDystonia #dystoniamovesme #d...
warriors of Dystonia vlog - 3.3.22 - colds, dystonia articles and a pizza stone
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warriors of Dystonia vlog - 3.3.22 - colds, dystonia articles and a pizza stone
Podcast recorded and newspaper articles about my project published soon!
Переглядів 182 роки тому
15th, 16th, 17th attempt at recording this update video. Mix of brain farts, digressing and generally becoming distracted by my own shadow was getting in the way. Recorded the first episode of the new series of the Warriors of Dystonia podcast in the week and I will begin editing it next week. Really over the moon with the new format and I can't wait to share the finished episode with you all! ...
Getting ready for newspaper photographer - nervous!
Переглядів 112 роки тому
Recently, I've been in touch with a really awesome journalist who helped put an article together that shares the Warriors of Dystonia project and Dystonia awareness. It'll soon be in the local newspaper (Belfast Telegraph) and the Metro online. All about getting the word "Dystonia" out there!
project updates December 2021
Переглядів 102 роки тому
Update post - lots of great things coming up! Details in video,but please go here for full details - warriorsofdystonia.wordpress.com/2021/12/02/plans-for-2022-and-other-updates/ 🔹More donations made yesterday off the back of sales of Warriors of Dystonia book 🎉🎉 🔹A day in the life of a Karl (24 hours with me condensed to 1.5 hour video on UA-cam) 🔹Old blogs that I wrote right at the time I'd d...
A day in the life of Karl (Warriors of Dystonia)
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I have been thinking about doing this for a while, and here it is. This is a typical, quiet day in the life of a Karl. For more information on the Warriors of Dystonia project, head to: warriorsofdystonia.wordpress.com/ To buy the Warriors of Dystonia book - www.lulu.com/en/gb/shop/karl-kiddie/warriors-of-dystonia/paperback/product-8d4wr9.html?page=1&pageSize=4
Daughter's birthday, Christmas and project plans (Warriors of dystonia vlog 15.11.21)
Переглядів 282 роки тому
Hi everyone! Hope you are all keeping well, just an update on what I have been up to and what's been going on. It was my oldest daughter's 14th Birthday this weekend. Had some really nice and much needed family time as I have been struggling a bit with the old mental health recently. Seems like it is really common right now. Anyway, great weekend, board games on Friday night, a nice walk around...
What is Warriors of Dystonia. The Warriors of Dystonia book.
Переглядів 292 роки тому
What is Warriors of Dystonia. The Warriors of Dystonia book.
My recent visit to the Opticians - cervical dystonia
Переглядів 632 роки тому
About a couple of weeks ago I had to go to the opticians. An absolute nightmare at the best of times and even more so when you can't keep your head still. But, what was really cool was that one of the people working at the opticians had cervical dystonia too! This is the first person I met face to face who not only has dystonia, but has the same type as me! #dystonia #cervicaldystonia #dystonia...
One of my photography spots and birthday blues 12.08.21
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One of my photography spots and birthday blues 12.08.21
Dystonia consultation over the phone 13.08.21
Переглядів 933 роки тому
Dystonia consultation over the phone 13.08.21
Weather, visiting Wales, and not drinking (Warriors of Dystonia blog 23.07.21)
Переглядів 893 роки тому
Weather, visiting Wales, and not drinking (Warriors of Dystonia blog 23.07.21)
The Warriors of Dystonia Podcast - a talk with Jakki
Переглядів 853 роки тому
The Warriors of Dystonia Podcast - a talk with Jakki
The Warriors of Dystonia Podcast - A talk with Kerry
Переглядів 1603 роки тому
The Warriors of Dystonia Podcast - A talk with Kerry
Draft print of The Warriors of Dystonia book! (Warriors of Dystonia vlog 03.02.21)
Переглядів 173 роки тому
Draft print of The Warriors of Dystonia book! (Warriors of Dystonia vlog 03.02.21)
Decorating bedroom, print copy of book, website & future projects (Warriors of Dystonia 25.02.21)
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Decorating bedroom, print copy of book, website & future projects (Warriors of Dystonia 25.02.21)
Weather, cheese, painting the bedroom and my beard (Warriors of Dystonia blog 15.2.21)
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Weather, cheese, painting the bedroom and my beard (Warriors of Dystonia blog 15.2.21)
The book, family time and stuff (Warriors of Dystonia vlog 03.02.21)
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The book, family time and stuff (Warriors of Dystonia vlog 03.02.21)
Sh&tty week - anxiety and the Warriors of Dystonia project update (16.01.21)
Переглядів 1433 роки тому
Sh&tty week - anxiety and the Warriors of Dystonia project update (16.01.21)
Project update, Covid rant and stopping breathing in my sleep! (Warriors of Dystonia vlog 11.01.21)
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Project update, Covid rant and stopping breathing in my sleep! (Warriors of Dystonia vlog 11.01.21)
Christmas eve and day / I won a PlayStation 5 (Warriors of Dystonia vlog 26.12.20)
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Christmas eve and day / I won a PlayStation 5 (Warriors of Dystonia vlog 26.12.20)
Christmas next week! (Warriors of Dystonia vlog 18.12.20)
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Christmas next week! (Warriors of Dystonia vlog 18.12.20)
10 year wedding anniversary and Christmas (Warriors of Dystonia vlog 27.11.20)
Переглядів 413 роки тому
10 year wedding anniversary and Christmas (Warriors of Dystonia vlog 27.11.20)
Noticed that first sip of tea your head tilted and tensed completely up. That's how mine started out thats when I knew something wasn't right, That's when I knew I was going to have a long road ahead of me and I knew no one else would be able to understand what I was going through.
promosm
I’m happy to be involved in a podcast
Its always sad when it's a young person with Dystonia. Best wishes to Ellis and his dad. Very interesting to listen to . Thanks Karl
Well done Karl for everything you do for dystonia awareness 👏
Thank you Tim and good luck Ellis x7
Hey Karl, I am fighting the battle with dystonia as well. Mine is very similar to yours. First diagnosed as essential tremor, then cervical dystonia. Primarily head tremors. Just wondering if you take any meds or botox for your condition ? I have been on propranolol and klonopin, then botox. Botox was a miracle at 1st, but slowly, not working as well. On a personal note, I don`t think alcohol is good for us, as it may cause inflammation of the brain. I know I have tried to hide my condition with alcohol, but the next day, the shakes are twice as bad. Take care Mate, and thanks for all that you are doing !!
Hey Paul, nice to meet you. I was offered Botox, but by this point I had been pretty much functioning for more than six years without any meds, so I said no. My girls were pretty much babies and I was afraid of side effects of medication. I still don't take anything, but changed up my diet and lifestyle. I exercise daily and cut caffeine. The beers tend to be a once a week, but nothing excessive to be honest. Like you said, the next day is not just a hangover and I also have more shakes than usual. Take care and best wishes to you mate.
@@warriorsofdystonia Hey Karl, Amazing, Looks like you are doing great without meds or botox. I am finally stopping coffee, and making a huge improvement. I am very upset that through the last 15+ years, I have never had one doctor advise me to stop coffee ? Exercise is awesome !! I wish you all the best !!
The headset looks dashing LOL I think I would have to say for me it's a little embarrassing however however I've learned to accept it and like they say here in Canada it is what it is can't control something you can't stop lots of love to you and the family stay healthy God bless
Hey bud, being a gamer geek with my brothers, I am well used to wearing a headset :D - either that or I have to scream at my laptop lol Take care my bud, hopefully catch you before the end of the year.
Hi Eugene! I am living with cervical dystonia in central Alberta. Thanks for sharing. Have you considered radio frequency ablation at all ? It helps with the arthritis pain in my neck. Take care, Eugene.
Hey Marcy, I will pass this on to Eugene. He is such a lovely guy, someone who has become a good friend of mine very quickly. If you wish to chat to him or reach out, he can be found on Instagram with the name "Mr_dystonia" My name is Karl and I set up this Warriors of Dystonia project to spread awareness and people's experiences of life with dystonia. I've had cervical dystonia for around 14 years now. Take care and thank you for your message :)
@@warriorsofdystonia Hi Karl! Yes I follow you on Instagram. I am 'grams boho bags and more' on Instagram. My CD started in Dec 05 but not a diagnosis for many years! I have had 2 back surgeries it all started! It has been difficult at times. Also have an infrared heating pad that helps tremendously! Take care Karl
Ah, hey Marcy 😊 Sorry to hear about your struggle. Dystonia is truly unrelenting! I'll certainly be looking into heat pads to see if they help on those bad days. Take care and best wishes to you 💙
Thank you!
Ah, thank you :)
Hey brother. Good to hear and see you and listen to your experience with this painful disorder. I have both-- tourette syndrome and cervical dystonia . I also invite you to listen to me share on how certain health principles and tools can really help to make these symptoms more manageable and become aware of a sense of inner peace that is here irregardless of the imbalances in the body and mind. I love to have dialogues and answer questions of others who share this common struggle. Thanks for your honest video.!!..:)
Hey man, took a look at your channel there, looks like I need to book some time off work and do a binge watch :D I made some serious changes in my lifestyle because I am flying rapidly towards my mid 40s and I want to be here as long as I can for my wife and daughters. I really got into regular exercise, stopped drinking any sort of caffeine drinks and changed my diet too. Not sure if it was that or perhaps being in a better frame of mind, but whatever it was has helped me manage my dystonia greatly. Well, when it comes to the neck pulling. More recently I have developed a more noticeable tremor, which is a bit of a downer, but I will power through. Take care and best wishes from Belfast buddy!
Well done Kerry! xx
I'm going to use that my friend if it can happen to me it can happen to you I like that I think people will be more interested when hearing that be well my friend
I have nothing but love for you my brother thank you for being here for us
Okay it's official we're coming to Ireland next Christmas LOL your tradition sound amazing and I love the sweater by the way
Hahaha, man, my stomach after all the food was as messed up as I thought it would be... but totally worth it!
Hello my friend I am stoked you and your family had a good Christmas ☃️☃️🌲 I am sad to hear that your family is going through some health issues I hope and pray everything goes well my brother and you better add me on Playstation hahaha that is awesome that you won and you're right once in awhile we just need a win I haven't quite been myself for the last couple of months starting to feel a little better it will definitely have to do a Skype sooner than later that's my bad brother anyways many blessings
Hey man, thank you very much! I've been an Xbox guy for more than 10 years, so it's taking some time to get used to the Playstation :D Ready when you are lol - Sorry to read things ain't been great buddy, but glad things are getting back on track. 2020 has been a sucky year dude, absolute shit, but we keep on fighting. It's all good, whenever you are ready buddy, send me a message and we'll get a call sorted. All the best to you and the family, all the best and I keep everything crossed that 2021 is an awesome one!
I feel blessed to have met you my friend I'm sure a lot of us do we all appreciate the work you're putting in to raise awareness for dystonia I'm sorry you're separated from the family that can't be easy our families are definitely our support systems so hopefully you get back together soon please give your wife my best I hope everything goes well I can't imagine the stress you and your family must be under stay healthy love the updates God bless
Thanks so much man! Appreciate your kind words so much 👊
great to hear Andy’s story and journey with FND and dystonia. Thanks for doing this podcast Karl...it’s nice to hear other stories about people’s individual symptoms with dystonia, as I don’t know anyone where I live here in Nova Scotia to talk to and share stories with to compare notes, so to speak. I’m enjoying listening to your podcast very much!! 💙🌻
Hey Lynn, thanks so much - I am really glad that you are enjoying the podcast :) I am going to be recording another one towards the end of next week and will hopefully have it posted up a week after that. Perhaps you'd like to share your story one day - I'd love to chat to you :) Take care, Karl.
Hi my name is Jason Contreras, I have dopamine responsive Truncal dystonia [ parkinsonism] been taking l-dopa for a 8 months. L-dopa has changed my hole life around for the the better... 2018 I was diagnosed with stage 3 non- Hodgkin's lymphoma in the front of my left lower spine . What a fight I had to get a skin biopsy to diagnosed me with parkinsonism ( dopamine responsive Truncal dystonia)
Hiya Jason, thanks so much for your comment. Seems that most people that go through dystonia have to not only cope with the condition, but fight to convince medical professionals to take our situation serious. I am so glad to hear that you are getting good results from the L-Dopa. Take care and all the best to you.
Good luck with all your projects
Hey Karl, i like your energy and how confident you are to share your experience. I struggle from dystonia too, mine is called Paroxysmal kinesigenic dyskinesia (PKD), movements such as getting up from a chair, walking, running can trigger an episode.. my head will slowly start turning left and my left hand will curl up for 10secs then i get back in control, i hate it so much when it happens at an inconvenient times where i have to explain myself and all, but i try my best to not feel bad about it you know. anyway it’s nice to meet you, hope you’re good man. take care of yourself & your family :) ♥️
Hey man, lovely to meet you too :) Thank you for your kind message and for sharing about your battles. Yeah, this thing really is unpredictable and likes to surprise us, doesn't it? You're right though, it can be harder to hide it than just accept it and power on. Even to this day I still find I have to explain myself to friends and family, even if they already know full well about the condition. Have an awesome weekend my friend and best wishes to you and your closest :D
Did you get to see the comet?
No 😭😭😭😭 It was too cloudy.
We saw it last night at a respectable midnight but by time I woke daughter up a lone cloud covered it.
@@katiewells7914 argh! Clouds are evil!
it's the heat and humidity it happens to us all Karl.... U Got This 👍
Thanks Joanne 🙂
You’re not alone. Plenty of us are overwhelmed right now. Take care of yourself. It’s really true that this too shall pass. Love your mug😊
Thanks for the kind words, Sarah. I forgot which mug I was drinking from 😂 Best wishes to you 😊
@@warriorsofdystonia The Iron Maiden Mug ;)
@@sarbtom 🤘