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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 !!

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

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.

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.!!..:)

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

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

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

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!! 💙🌻

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)

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 :) ♥️

Did you get to see the comet?

it's the heat and humidity it happens to us all Karl.... U Got This 👍

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😊