Im making a pretty astounding recovery from generalized dystonia and the over plasticity of the brain theory seems to hold a lot of weight. Im at a weird point now where my my mind has learned to very quickly turn off the dystonia as I perceive it and it goes to work work very fast at learning a new way of being that works the way it ought! Its almost as though the same mechanism that caused the severe disease is now being utilized to undo the disease! I have heard of some people making a full recovery and think I will join them soon myself! I think in time we will have solutions for dystonia we can call cures.
These lectures are helpful, but we are struggling to find people who actually have Dystonia to connect with. We have found some Facebook groups helpful, but with the lack of real life video of dystonia symptoms, we decided to make videos ourselves. We open up our lives and share things we would rather keep private because we know many are struggling alone and need encouragement beyond the validation of a doctor (20 years later in my case) and want to help connect others to be a support system.
Thanks for posting this it’s a nice reminder that I really need to learn to edit and post some UA-cam videos for this exact reason. I’ve started to make what I think is a pretty miraculous recovery and feel burdened to share what I’ve learned!
Thank you for this video. I started exhibiting dystonia tremors in 2016. It started out very subtle, but quickly escalated into full time head tremors. Back then it was a fight to even get an accurate diagnosis. I had one doctor send me to a psychiatrist, who wanted to hear about my childhood traumas. It was lengthy, and emotionally exhausting. I determined to educate myself about dystonia, and build a channel on my treatments, and sharing what helps, what makes it worse. I really appreciate this video because there is still so little information out there. Thanks again!
I had doctors dismiss me for 20 years and a few years ago sent me to the psychiatrist who said it was evident I was a well adjusted, intelligent, motivated person with a real physiological condition. I'm sorry you had to go through that, and I have been there. Now I make videos to show what Dystonia is and how it affects my body, my family, and everything else. I encourage others to do the same, as it is a very lonely place to be when nobody believes you are actually sick or they don't know how to deal with you so they just stay away. There is support out there, I hope our videos help people with Dystonia feel understood, empowered, and encouraged.
I really appreciate this clear discussion, especially the part about the role of and effect of emotions. This is the most helpful weaving together of different factors and levels of activity that I have heard. And I also hear in this man‘s way of speaking, a true compassion for the patient.
I’ve thought a lot about this lecture since viewing it. At first I was impressed by the analogy used. But on further reflection I feel this reductionist analogy adopts a somewhat mechanistic view of dystonia, breaking it down into some kind of hierarchical structure from the micro (genetic) to the macro (social, behavioral) levels. While useful, this perspective misses the dynamic, bidirectional interactions that characterize living systems. Life sciences increasingly recognize that health and disease emerge from complex systems’ behavior, where feedback loops, non-linear dynamics, and emergent properties play crucial roles. These aspects are challenging to incorporate into a linear, hierarchical model. Although I understand the time limitations a consequence of this analogy is that there is much critical information on aetiology that is missing here.
Could meditation be an answer? When I close my eyes and breathe deeply I can feel a pressure in my forehead and it really helps sedate me, my spasms seem to go away for a little while.
I have dystonia since I was 8 I am 24 now. I know it varies depending on the type of brain damage weather it could from a pharmaceutical, dental problem, or a brain trauma ect.
I have the DYT1 gene (GAG deletion) but have no symptoms except occasional writers cramp and the toes on one foot will sometimes splay apart. I have two brothers - one severe enough to require a wheelchair if he needs to travel more than 50-100+ feet at one time and another about 1/4 that bad. I wish we could be part of studies to help others in the future
Unfortunately any studies we could have taken part of in the USA (we're from the east coast in Canada) required my brothers to go off their medication and botox, which just wasn't an option for my oldest brother. He also has a deep brain stimulator, which apparently also impact study findings
@@mint83 I hope your symptoms haven't worsened in the last 10 months, I was assessed for the DBS back in 2011 but in the end it was just too expensive here. I do have a spinal cord neurostimulator implanted since 2009 though, does your brother receive much relief from the DBS? I hope all 3 of you are safe and healthy in these strange times.
For those of you living with dystonia or treating people with dystonia, I strongly encourage you to get a copy of the book, Diagnosis Dystonia: Navigating the Journey (www.tomseamancoaching.com or www.diagnosisdystonia.com) It discusses all treatments, both medical and alternative. It also discusses in great detail all of the things we deal from the diagnosis onward (and tools for managing them), such as grief, fear, anxiety, depression, pain and pain management, doctor visits, social issues, relationships, skills for daily living (mental and physical), treatment options, stress and stress management, coping skills, etc. This book has been recognized by the Michael J Fox Foundation.
Every speaker must first be very aware of the audience and their level of knowledge or experience. Any presentation must be geared towards the level of the audience. Was the information helpful, new information, or of value to the audience?
Im making a pretty astounding recovery from generalized dystonia and the over plasticity of the brain theory seems to hold a lot of weight. Im at a weird point now where my my mind has learned to very quickly turn off the dystonia as I perceive it and it goes to work work very fast at learning a new way of being that works the way it ought! Its almost as though the same mechanism that caused the severe disease is now being utilized to undo the disease! I have heard of some people making a full recovery and think I will join them soon myself! I think in time we will have solutions for dystonia we can call cures.
What a very helpful person and a lovely person and so kind and caring
These lectures are helpful, but we are struggling to find people who actually have Dystonia to connect with. We have found some Facebook groups helpful, but with the lack of real life video of dystonia symptoms, we decided to make videos ourselves. We open up our lives and share things we would rather keep private because we know many are struggling alone and need encouragement beyond the validation of a doctor (20 years later in my case) and want to help connect others to be a support system.
What's the name of that group???
Thanks for posting this it’s a nice reminder that I really need to learn to edit and post some UA-cam videos for this exact reason.
I’ve started to make what I think is a pretty miraculous recovery and feel burdened to share what I’ve learned!
Thank you for this video. I started exhibiting dystonia tremors in 2016. It started out very subtle, but quickly escalated into full time head tremors. Back then it was a fight to even get an accurate diagnosis. I had one doctor send me to a psychiatrist, who wanted to hear about my childhood traumas. It was lengthy, and emotionally exhausting. I determined to educate myself about dystonia, and build a channel on my treatments, and sharing what helps, what makes it worse. I really appreciate this video because there is still so little information out there. Thanks again!
Steve Zarren has suggested a natural treatment: He can be reached at: www.dystoniadisease.net/
I had doctors dismiss me for 20 years and a few years ago sent me to the psychiatrist who said it was evident I was a well adjusted, intelligent, motivated person with a real physiological condition. I'm sorry you had to go through that, and I have been there. Now I make videos to show what Dystonia is and how it affects my body, my family, and everything else. I encourage others to do the same, as it is a very lonely place to be when nobody believes you are actually sick or they don't know how to deal with you so they just stay away. There is support out there, I hope our videos help people with Dystonia feel understood, empowered, and encouraged.
I really appreciate this clear discussion, especially the part about the role of and effect of emotions. This is the most helpful weaving together of different factors and levels of activity that I have heard. And I also hear in this man‘s way of speaking, a true compassion for the patient.
I’ve thought a lot about this lecture since viewing it. At first I was impressed by the analogy used.
But on further reflection I feel this reductionist analogy adopts a somewhat mechanistic view of dystonia, breaking it down into some kind of hierarchical structure from the micro (genetic) to the macro (social, behavioral) levels. While useful, this perspective misses the dynamic, bidirectional interactions that characterize living systems.
Life sciences increasingly recognize that health and disease emerge from complex systems’ behavior, where feedback loops, non-linear dynamics, and emergent properties play crucial roles. These aspects are challenging to incorporate into a linear, hierarchical model.
Although I understand the time limitations a consequence of this analogy is that there is much critical information on aetiology that is missing here.
Could meditation be an answer? When I close my eyes and breathe deeply I can feel a pressure in my forehead and it really helps sedate me, my spasms seem to go away for a little while.
I have dystonia since I was 8 I am 24 now. I know it varies depending on the type of brain damage weather it could from a pharmaceutical, dental problem, or a brain trauma ect.
I have the DYT1 gene (GAG deletion) but have no symptoms except occasional writers cramp and the toes on one foot will sometimes splay apart. I have two brothers - one severe enough to require a wheelchair if he needs to travel more than 50-100+ feet at one time and another about 1/4 that bad. I wish we could be part of studies to help others in the future
Unfortunately any studies we could have taken part of in the USA (we're from the east coast in Canada) required my brothers to go off their medication and botox, which just wasn't an option for my oldest brother. He also has a deep brain stimulator, which apparently also impact study findings
@@mint83 I hope your symptoms haven't worsened in the last 10 months, I was assessed for the DBS back in 2011 but in the end it was just too expensive here. I do have a spinal cord neurostimulator implanted since 2009 though, does your brother receive much relief from the DBS? I hope all 3 of you are safe and healthy in these strange times.
REALY GREATFUL THANKS TO U .FOR DISCUSE AND TREATMENT OF DYSTONIA.
keep turning the volume up
For those of you living with dystonia or treating people with dystonia, I strongly encourage you to get a copy of the book, Diagnosis Dystonia: Navigating the Journey (www.tomseamancoaching.com or www.diagnosisdystonia.com) It discusses all treatments, both medical and alternative. It also discusses in great detail all of the things we deal from the diagnosis onward (and tools for managing them), such as grief, fear, anxiety, depression, pain and pain management, doctor visits, social issues, relationships, skills for daily living (mental and physical), treatment options, stress and stress management, coping skills, etc. This book has been recognized by the Michael J Fox Foundation.
Tom I watched some videos about you and this book. Is there way way I can speak to you about some questions about dystonia?
I got dystonia in my early 70's. Have no idea why. So far the only thing that dials it down to nothing is Ativan. Anybody else find this also???
Kann es sein ,das es was mit der Zirbeldrüse zu tun hat?
Every speaker must first be very aware of the audience and their level of knowledge or experience. Any presentation must be geared towards the level of the audience. Was the information helpful, new information, or of value to the audience?
Podrían subir estos videos con traducción al espsñol, que ganas de saber qué dice
No dice una mierda
Involuntarily legs movement....why ?
No Perfect Treatment of cervical dystonia
Google: Dr Lee Korea Dystonia fcst.
There's your answer
HYDERABAD No Medicn Give me Arddas In Dilsk Nagar
It ruined my fucking life
20min and still hasn't said what causes dystonia. Lots of gibberish but no answers.
Wow, and I thought it was one of the best, most comprehensive discussions I've heard.
@@hamzasheikh2013 hi, would like to know more
I got one IV of reglan and I got dystonia. It's getting better now. But it was hell