Welcome | Dystonia Life
Вставка
- Опубліковано 14 жов 2024
- In this video dystonia patient Adam is traveling. He is navigating the airport and as you can see in the video there are several situation he encounters where people around him are misreading his posture and behavior due to his cervical dystonia affecting the head and neck. They pass judgement rather than practice understanding.
If you are a dystonia patient - can you relate? Please share in the comments what your experience has been in a similar situation.
---------------------------------
You can join in raising awareness, simply by liking, commenting and sharing the Dystonia Europes posts. As a rare disease, we need all the help we can get. Let's do this!!! 💪🧡
Social media:
FACEBOOK | dystonia.europe/
INSTAGRAM | @dystoniaeurope
TWITTER | @dystoniaeurope
WEBSITE | www.dystonia-europe.org
Inquiries:
sec@dystonia-europe.org
#dystoniatalks #dystoniaeurope #dystonia
Dziękujemy za wszystko czego dokonałeś dla innych chorujących na dystonię.
Tak mi przykro, że już nie ma cię z nami.
Odpoczywaj w pokoju ❤
Oh my gosh. I just learned that the guy in this video- Adam Kalinowski - is no longer with us. He died roughly a year ago, at the age of 37, following a tragic accident on 10 November, 2022. He was diagnosed in 2006 and went on to form a support group then became the president of Dystonia Europe. What a loss! But what a legacy! There are a lot of dystonia heroes out there and he is definitely one of the greatest. I'm in Australia. Never even heard of Dystonia Europe until today. This video is a gift. Thanks Adam RIP
Thank you Adam for this video and for everything you have done for our dystonia comunity ...may your wonderful soul rest in peace ❤
😢😢😢😢😢😢😢
This is the best video about cervical dystonia that has ever been produced. So relatable!
Thanks for posting ❤ I have generalized Dystonia I understand how he feels 😢
This is the BEST video on Cervical Dystonia I have ever seen. I can relate to every moment of this brief video. There is also the 'silent' cramp-like pain through the neck muscles the whole time to contend with - pain that would put most people out for the day - but we get up and go do life with it.
Ich habe auch eine zerfikale Dystonie und kann das so nachvollziehen. Ich habe es noch nicht so schlimm, das mein Kopf zur Seite neigt. Aber wenn mein Botox nicht mehr wirkt zittere ich am Kopf was mir sehr unangenehm ist und manchmal habe ich auch Probleme mit dem gehen so zittrig bin ich. Ich wünsche der Welt egal welche Erkrankung und Behinderung mehr Aufklärung und Verständnis sowie Respekt gegenüber dem erkrankten.
Can I ever relate. People think I'm looking at them when I am in a store, sitting in a restaurant etc and the thing is I don't even see them.
Thank you more people need to see and stop staring. I have it to. The stares arent as bad as the comments
So hard to watch. Lived with Dystonia over 30yrs. Instead of staring wish people would ask. WE NEED TO EDUCATE THEIR RUDENESS.😢
omg this was hard to watch. this was exactly me just 2 years ago. torticollis is fucking hell. had this shit for over 4 years
I also have it for over 4 years too,has anything helped long term? mine always returns,it's unbearable
@@Witchy_cat943 fortunately im almost symptom free. i dont know why it went away. maybe my brain just learned to cope these dystonic signals in my brain... have no clue.
@@Witchy_cat943 what i did, was trying not giving a shit about how people look at me and tried to do everything just normal, like going to the gym. i had this trigger that when i talked to people or people spotted me my torticollis was controllable. i also tried to analyse wich muscles have tension and tried to relax them... maybe it was a combination of all
I have dystonia of the neck my chin touches my chest most people are kind it’s terrible to have to live with this. There may be a few who are judge mental but overall I’ve been helped more than hurt
You don't have it anymore ?
I wish he was wearing a medical tag though it'd be easier for people to stop staring ..
everyone who wasn't dropped on their head can see that it is a medical issue. Branding people for being different has worked really well in the past. If someone wants to wear them so that first responders can help - absolutely fine. But saying people with disabilities should wear them so people stop staring? Sounds a bit ridiculous to me
@@resathe6760 in my opinion it helps first responders and others to understand there's a medical issue without knowing what it is just the medical logo is enough and discreet info on the back .. anyways your free to do as you please in the end
@@FullTimePatient37I totally get that as a reason but not so people stop staring. I mean it is obvious that he has some kind of disability and people should just mind their business
@@resathe6760 if this would make my Day easier I'd do it I have multiple disabilities..I can't keep fighting stress because my health is declining very rapidly..it doesn't matter I can't leave the house anyway
@@resathe6760true! Those people whom keeps staring at sick people shall mind their own business because one of these days we are all get sick whether they like or not it’s a part of our journey in life.
I have dystonia too, in my neck. Its paintfull. I take botox and medicine.
Botox injections specifically is very painful and obviously is dangerous in the long run!