2 жыл бұрын
2 жыл бұрын
2 жыл бұрын
3 жыл бұрын
3 жыл бұрын
Пікірлер
@Annx70s 2 жыл бұрын
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.
@scottlarson9406 2 жыл бұрын
promosm
@BoninBrighton 2 жыл бұрын
I’m happy to be involved in a podcast
@marionpaterson772 2 жыл бұрын
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
@stephaniebairstow7660 2 жыл бұрын
Well done Karl for everything you do for dystonia awareness 👏
@stephaniebairstow7660 2 жыл бұрын
Thank you Tim and good luck Ellis x7
@tomjordan6356 2 жыл бұрын
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 !!
@warriorsofdystonia 2 жыл бұрын
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.
@tomjordan6356 2 жыл бұрын
@@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 !!
@DystonicDummy 3 жыл бұрын
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
@warriorsofdystonia 3 жыл бұрын
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.
@marcyschafers4203 3 жыл бұрын
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.
@warriorsofdystonia 3 жыл бұрын
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 :)
@marcyschafers4203 3 жыл бұрын
@@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
@warriorsofdystonia 3 жыл бұрын
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 💙
@marcyschafers4203 3 жыл бұрын
Thank you!
@warriorsofdystonia 3 жыл бұрын
Ah, thank you :)
@BeyondTheAlchemy 3 жыл бұрын
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.!!..:)
@warriorsofdystonia 3 жыл бұрын
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!
@BarbieG 3 жыл бұрын
Well done Kerry! xx
@DystonicDummy 3 жыл бұрын
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
@DystonicDummy 3 жыл бұрын
I have nothing but love for you my brother thank you for being here for us
@DystonicDummy 3 жыл бұрын
Okay it's official we're coming to Ireland next Christmas LOL your tradition sound amazing and I love the sweater by the way
@warriorsofdystonia 3 жыл бұрын
Hahaha, man, my stomach after all the food was as messed up as I thought it would be... but totally worth it!
@DystonicDummy 3 жыл бұрын
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
@warriorsofdystonia 3 жыл бұрын
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!
@DystonicDummy 4 жыл бұрын
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
@warriorsofdystonia 4 жыл бұрын
Thanks so much man! Appreciate your kind words so much 👊
@lynnmcluhan3616 4 жыл бұрын
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!! 💙🌻
@warriorsofdystonia 4 жыл бұрын
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.
@jasoncontreras3394 4 жыл бұрын
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)
@warriorsofdystonia 4 жыл бұрын
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.
@katiewells7914 4 жыл бұрын
Good luck with all your projects
@Augvsty 4 жыл бұрын
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 :) ♥️
@warriorsofdystonia 4 жыл бұрын
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
@katiewells7914 4 жыл бұрын
Did you get to see the comet?
@warriorsofdystonia 4 жыл бұрын
No 😭😭😭😭 It was too cloudy.
@katiewells7914 4 жыл бұрын
We saw it last night at a respectable midnight but by time I woke daughter up a lone cloud covered it.
@warriorsofdystonia 4 жыл бұрын
@@katiewells7914 argh! Clouds are evil!
@joannehillis2468 4 жыл бұрын
it's the heat and humidity it happens to us all Karl.... U Got This 👍
@warriorsofdystonia 4 жыл бұрын
Thanks Joanne 🙂
@sarahtomaino9162 4 жыл бұрын
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😊
@warriorsofdystonia 4 жыл бұрын
Thanks for the kind words, Sarah. I forgot which mug I was drinking from 😂 Best wishes to you 😊
@sarbtom 4 жыл бұрын
@@warriorsofdystonia The Iron Maiden Mug ;)
@warriorsofdystonia 4 жыл бұрын
@@sarbtom 🤘