Dystonia. Rewiring the brain through movement and dance | Federico Bitti | TEDxNapoli
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- Опубліковано 12 лип 2015
- Using my body I was able to teach my brain, it takes exercise, discipline, a lot of work and time, but there’s something else… There is something that we might underestimate, that can be revolutionary, which is different for each person, patient, human being… This was my something!
Born in Rome in 1974, at the moment he's working as multimedia journalist for Repubblica.it website.
From 2007 he's suffering from a movements disturbing rare disease called Cervical Dystonia that's deeply affecting his life and his career. After the suitable treatments and the refuse for a neurosurgical operation he's experiencing an innovative treatment conceived by a Spanish expert in biomechanics in Toronto (Joaquin Farias). This treatment is based on the usage of movement, dance in his case, to retrain his brain retrieving movement capacity and get a correct posture.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at ted.com/tedx
I am a neurologist. This video brought tears of joy to my eyes. Every neurologist should see this. Bravo to Mr Bitti
I had it for year's and years I started dancing after about 7 year's. I also started taking B1 and eating lots of fish and shellfish. And my pain level is down to abt 2. Dance helps immensely.
I was also told I HAD NO HOPE to get better.
I am a Physical Therapist and a ballet dancer and I am crying as well! Bravo indeed!
Thank you Dr. For being one of those open minded doctors that takes in new information and remains flexible to things like this. I have my own slew of things i’m currently working through. And sometimes I get frustrated with doctors. I’ve learned to realize it isn’t their intention to be closed minded, but rather it’s being stuck in a certain mindset. So, it gives me great pleasure to see people like you are aware of the need for creative outside of the box treatments.
Yes me too tears in my eyes. I have a voice disorder. Spasmodic dysphonia. Once was an actress and singer. Gone for always. Bottox helps me speak almost normally for three months. And dancing helps me find some possitive energie back.
Thank you for this speech and I'm glad that someone is talking about it publicly❤! I have been suffering from dystonia for a year, and I was diagnosed after 6 months thanks to a private visit to a neurologist who referred me to the hospital. If that haven't haopened, I would probably still go from doctor to doctor. I live in the UK and I have the impression that general practitioners are uneducated, at least in most cases I experienced disregard for my condition. Once, during the visit, when I started crying from helplessness and pain, the doctor wrote a note saying that I was tearful :/ when a few months ago I asked another doctor for sick leave (I work physically in a factory and I have trouble turning sideways, even washing dishes, sometimes drinking) she refused, thanhfully another private visit saved me. But my savings are shrinking like my muscles and I don't know what will happen next... There is no NHS physiotherapy here, and my doctor told me that I shouldn't exercise and I have botulinum injection, which doesn't help, so I read and look for information myself. All hope lies in scientists and people like you❤❤❤
Try yoga and pranayama please
I started with dystonia in my mid twenties and it started exactly the same way. But I was lucky in that it lasted for around 5 years and then for whatever reason it went away. I always say that being able to relax and positive thinking made me better but whether that is really the reason I will never know. I find it very difficult to watch videos that dystonia sufferers make, as i start to get the urge to turn my head again. I still think that it is still there inside my head and I have to keep it locked away. It is not just a physical condition, but an emotional one that is, in my case related to Anxiety.
I’ve heard of these remission cases. It just went away or faded away?
The condition came on over a short period of time, maybe 2 weeks. There had been no warning and I had not had any injury that I could put it down to. I sought help from my GP and was referred for psychiatric treatment, I was unable to work for around a year. I was taught relaxation and positive thinking techniques. For around 3 years I battled it daily and at times felt that life was not worth living as the pain was at times was excruciating. Then slowly but surely over about a year I felt it releasing its grip on me. I have now been Dystonia free for 30 years although I have had times when I felt that it may return and as I mentioned in a previous post I try not to dwell on thoughts about the condition as I believe it is still inside waiting to grab me again. To anyone else who suffers with Dystonia who might read this, then I say don’t give in to it and God Bless you.
@@jerrytolley4473 I had a TBI 11 months ago. And have had loads of symptoms.
I’ve had twitches in July, myoclonus in October and November, and last week started getting TMJ and neck stiffness and tightness and this week a coming and going of myoclonus (extremely mild) and these little involuntary neck jerks that feel associated with my neck pain.
It comes and goes. Doesn’t affect my sleep. And no one can notice it.
I fear it’s related to my injury and that there’s elements of movement disorder taking place.
But I’m stressing about a job interview tomorrow and many other things. And the past two weeks I feel a correlation of anxiety and these little movement issues.
😂 Tears of Joy! Cervical Dystonia It's like someone telling my story. Thank you. I'm 9 years Dystonia , botox didn't help not 1% , dry needling, lost with Anxiety and Paninc Attack disorders am wrecked with pain. Music is and trying to be positive is all that lets me get a breath from time to time. So few affected, so many of us feel alone. I still don't know my diagnosis all are. I have always been big music listener but I didn't fully realize why it's so hard for me to turn it off. Thank you!
How are you doing now,have you found some help,are you able to work?
I also have CD and struggle every day,it's such cruel illness😞
Awe bless his heart moving to Vogue made me cry. No one truly understands dystonia unless you've experienced it.
Thank you Federico. I'm Irish and have lived in Milan for 27 years. I have Dystonia and have become not a victim, not a survivor, but a thriver. Like you, I have learned to turn adversity into opportunity for 11 years. I'm a published author, language consultant and singer, dancer and courageous liver of life, even during these challenging times 💚💙❤️
Dance has helped me immensely. I also have this.
Thats awesome! Right there with you. The best thing that ever happened to me was my doctor told me id never recover. Im literally one of the fittest people at my gym. Im a good person to call when youre movng even. I think we all need to share our experiences that defy the science for all those that are suffering right now. The future is very bright!
Thank you Frederico for you are an absolute inspiration.I have had Dystonia for thirty years and it has got worse recently .You have given me hope and I will certainly try dancing and movement ❤Bless you xx
Thank you for this video! I have been recently diagnosed with cervical dystonia and have dystonic tremors of the head. I am receiving treatment with physical therapy and dry needling which has helped some. Seeing your improvement and how you have overcome your symptoms has brought me to tears. Tears of joy. To know that there is other treatments that could be done and tried rather than Botox injections and just learning to live with the condition. You have given me hope of improving! Thank you for sharing!
So glad you are sharing your journey with the world! I can remember the amazement and joy the day I picked up my form of dance ( hula hooping ). For the first time in what felt like an eternity I was in control of how my body moved not the dystonia! I am doing much better now and have not had a dystonic storm in a year! Thank God for relief!
Woah what? Tell me more!!
@@flyinhawaiiangc7310 of course! In late 2019 while at the grocery my head started to tremor ( like I was shaking it no). I wasn't sure what was going on and after it didn't quite for hours my husband said I should go get checked out. After many misdiagnosis the head tremors started to make their way down my entire left side. I was no longer in control of my body and was ready to give up on life. I did all the research after I was properly diagnosed and found ways to "trick" my brain into doing what I wanted. For example instead of reaching for something with my left arm that doesn't listen I reached with both and... It worked!! I began to retrain my brain with simple tasks at first. It was the breakthroughs I needed.
So I loved hula hooping, not the kind I did when I was a kid. It more of a circus/dance type. (You can find plenty of "hoopers" on UA-cam. ) I really missed it. I started slowly trying some easier trick with my hoops. It was wild! Muscle memory from years of hooping took over and while I still had trouble drinking from a glass or putting on mascara I could hula hoop like nothing was wrong! There is way more to my story (God at the center) but yep after using hooping and other various forms of physical therapy I am doing much better. It's incredible how connected our mental and physical are.
Thank you for sharing
Thank you. I have ST for over 50 years. It stopped me from having the career I wanted. Now I’m focusing on exercises. It’s too bad there’re so few therapists specialized in dystonie. I have to travel outside my home in Amsterdam. And it’s expensive. Because of TS I don’t have very much money. So I’m watch UA-cam exercises. Now I’ll try dancing. I love music.
Found this video a almost a year ago when I could barely walk or breathe. It didn’t look like much at first but I figured out there was something there with dancing. I found I could move just a little more with music on. It took a lot of work, but my whole right side has come back online! Through a lot of healing modalities I’ve actually been able to sort out my vision and hearing from my proprioception and motor functions! Starting to learn how to bring them all together with the right parts of my brain and will and by golly my body works by thought again!
ive had Dystonia in the left half of my body for 26 years...this vid is amazing ..inspiring and tearful for a dystonia suffer like myself that has never had help like that . .it makes sense that a movement disorder is treated by specialist movement experts , dancers know about movement in a expert way ...doctors know needles and pills and scapels , but is that the only way ? ...🙏 thankyou ...dance on forever
Love this! I was diagnosed 11 years ago and it’s funny but I’ve danced alone and noticed my movements are so much better but I couldn’t walk without Botox injections and I still struggled with walking. I never thought I’d walk effortlessly again until I discovered a ketogenic way of eating. I haven’t had any injections in almost 6 months now and I could barely go 3 months prior to this. It amazes me everyday. Keep dancing ❤️💕
I'm very interested in the idea that the ketogenic way of eating helped your dystonia. I have focal foot dystonia that only affects my right foot. I was diagnosed about 15 years ago. None of the standard treatments (including Botox) have proved effective for me and I'm not ready for DBS. May I ask what type of dystonia you have? I'm curious if the keto diet would be helpful for me. Thank you.
Congrats on finding your way
Is botox really helpful because I m suffering from hand dystonia and as I am student preparing for neet and going in appear in neet 2024 ?so plz guide whether it is helpful or not ? Should I think about it or not?
Big man, and going on stage with that causes even more stress - simply impressive, and thank you to be active for the community..
You are so admirable! Many doctors can't get it, it is unbelievable how they can destroy you because they are so damn narrow minded!!!Complimenti!! Movement is life and the brain lives through it!!!
So true!
This video totally changed my outlook on my CD. Thank you for giving me hope.
He should get millions of thumbs up so inspiring.
MUSIC is key. Movement, concentration, mood, all regulated by music. This makes the ultimate degree of sense to me. We need more music and dance therapy, not drugs!
Love you Federico. And I admire you, I followed your treatment adapted for me, and it works! I'm a nurse ,35 yesrs old, and i'm working for me and give information for doctors, nurses and people without distonia. Distonia is a chance to change in all my body, soul, feelings. Its hard to face it, but illnes also gives a lot of chances. Thanks for sharing your experience. You made me really happy and hopefull, thanks a lot.😊😊😊
+ana silva SÍ ANA! VAMOS QUE SE PUEDE!!!!
Can you please help me?? I've been suffering from general dystonia since I was 6 and now it's much worse. I'm on meds but they haven't helped at all
Thank you Federico for sharing your story. I've had this constant neck twitching for 10 years on and off with exactly these symptoms you described... In any situation that was fearful to me (Especially dating), my neck would lock in a specific position and then twitch every time I tried to look in the direction of my uncomfortability. I could not for the life of me figure what was/is wrong with me, I've come to accept it's a part of me and highly affected by how stressed/anxious I am. I try to meditate to retrain my thoughts and laugh at how embarrassing it gets sometimes even though others may not even notice. Good luck to everybody, we can overcome this with consistency and persistence :)
This is the same situation I find myself in with my Dystonia 😢
@@katrinamckeown6693 Hi Katrina, I ended up making a full recovery and it was a long journey. I empathize for people going through the same thing, but this was the video that lead me to Dr. Farias and the Farias technique. Feel free to reach out if you'd like
@@mirageleung1575you’re cured?
I am in tears. This video will help me explain my CD to those whom I truly want to understand.
Goosebumps. This is phenomenal. Movement is medicine!
Even ahead of his real dancing scene, he is dancing with hands & arms, with his voice while he talks. Wonderful!
I've had SD for 11 yrs. Botox injections every 13 wks. Gabapentin, klonopin & zanaflex routine meds. I've started jogging this past yr. I've done 3 5ks this yr. Some are extremely difficult others are fair. Most races I have to stop and rest. I don't care about my time. Just finishing. A 10k is in the near future! I didn't realize what I have been doing till viewing your video!
Beverly Pennington well done!!
Beverly Pennington did gabapenton ever make you nauseous?
I'm truly overwhelmed with tears! It's such a moving experience and to see him dancing joyfully is the best. My brother suffers from Cervical Dystonia for 7 years now and this is like a light at the end of the tunnel. We shall try it too!
My heart goes out to all who suffer from this condition and other movement disorders 💜
that's very kind Mary!
thank you
Wow! Talk about inspirational! I have Dystonia & live in constant pain but I just realized that I wanted to be a pro dancer & love to dance because it releases the pain. I will now embrace my desire to dance whenever I can pretty or not.
Soy José salas y tengo distonia cervical desde hace 4 años y me está agarrando la boca, es inspirador su video Sr Biti muchas gracias
I've had this for what seems like a lifetime, but is only a few years. I have it in several spots, along with chorea and tardive akathisia. It's getting worse, despite the medicine. I also have a type of arthritis that affects the joints and the soft tissue, which makes every involuntary movement hell. I can't play with my beautiful kids. I can hardly leave the house. I've considered things that a healthy person wouldn't, considering my own life. I desperately needed the hope tonight. Thank you so much.
Are you ok? I'm here to support you. I understand and i have a lot of free tips and resources to refer.
Bооst уууоur brаin рowеr in 14 dаys? twitter.com/1ba03513cb794157a/status/804578733948444672 Dуstonia Rеwiring thе brаin through mоvеmеnt and dаnce Fedеriсo Bitti ТЕDхNарооооli
Mhana Mason
Hi.. can you tell the doctor name you have visited? Can you share your tips with me
Thomas Staab - Hi there. I am not around any animals. I'm actually allergic to pet dander. I get a runny nose, eye itchiness, etc. It turned out that I had some serious hormonal imbalances that were exacerbating the movement disorders. I had a hysterectomy, salpingectomy, and unilateral oophorectomy last month, and the movement disorders almost immediately improved. They probably won't go away, but the improvement is drastic and I'm incredibly grateful.
Stella McFly
great for you, what hormonal problem did you have?
Thank you for seeking another holistic treatment and sharing it with us! You are truly inspirational as I, too, have dystonia and although my current treatment with botulism is working, I feel it is causing other problems. Thank you.
I can relate to every word of it. suffered for eight years myself. (not from dystonia though), when my doctor told me i need to accept my limitations I stood up and I said I will never do it.
I kept saying to myself loudly "there is a way for everything" each day I got up and went to bed. And, I was right. The way showed itself to me.
I am very happy and grateful that I didn't take my doctor's advice seriously.
B
I appreciate how this condition can challenge so many aspects of your life............. awesome Federico.......you have started me again on a new journey of hope......... THANK YOU...... thank you....
Great Video and I thank you so much. I have Distonia ( CD ) since 6 years. You know I use to be a Dance Instructor 35 years and when I stopped I worked 5 years as a Recepionist. The problem fixer is that after I stop dancing I stop all activities which was NOT what I should have done. I really understand clearly about ( keep moving, work the muscles ) You are Inspiration to Everyone and I thank you from the botton of my Heart; Québec Canada xoxoxo Johanne
Bravo. I suffer from cervical dystonia and have found, over time, that exercises requiring torsional movement are the best 'reverse therapy'. I totally get Federico's success with dancing; however, swimming and pool exercises focused on varied movements (not lap swimming) work best for me. At the risk of sounding ridiculous---I twist and turn in the water like an otter or dolphin, using my arms and torso more than my legs. Although it is physical, there are definitely elements of relaxation and joy in it (much like dance for most people). Whatever works! And hey, if David Bowie sang about swimming like a dolphin, it must be cool.
Doesn't sound silly makes sense! Thank you for sharing! I've tried to do pool therapies and and can't keep up with the classes. My Cervical Distonia leaves me always looking for alternatives. 😊 good luck to you
Thank you so much for this video. I have just been diagnosed with cervical dystonia. I am soon to be 78.years old but I can still dance! Thank you for the encouragement to keep on dancing…..
I was diagnosed with dystonia 2 years back. The attacks happened frequently. It changed not only my life but others around me. I took medication each time I had an attack for 6 months and I gained a lot of weight. My mum tried to find another solution and it was Zumba. I made major improvements. The attacks are not as frequent. Today, I'm still going for classes twice a week. I can't stop the routine because the last time I did that, the attack is worst! Hahaha.. I can't believe the solution is that simple.
Nur Lyn m
Nur Lyn - true Dystonia does not come on as an attack. Happens every waking hour. If I was you I'd go back to your neurologist and get re- evaluated. What you describe is not Dystonia
Nur Lyn that is wonderful!
This is amazing! Music and dancing for the cure!!
SO AMAZING!!!!!‼️‼️‼️
NEVER STOP DANCING 💯💯💯💯🌟☯️
Incredible!!! Thank you for sharing your story and giving hope to others.
Thank you for sharing your story.
THANKS Federico !!!
Suffering with Cervical Dystonia for years. Daily exercise and high protein diet (low to no carbs/sugar) have helped tremendously. I still get staggering pain periodically but it's much more manageable.
THANK YOU Federico. You have given me HOPE when I needed it. I had a similar "a-ha" moment recently, when listening to music. The more I listened and then began to sing, the more my spasmodic dysphonia and my generalized dystonia (affecting my entire body) symptoms lessened. Keep spreading the awareness and encouraging all to seek alternatives or different perspectives.
Every time i see your videos i see a fighter, a survivor, a hero. And i'm starting to do the same in Spain and it will be seen to all the workd. Distobya is invisible for blind oeople and even doctors. Really thanksfor sharing. i work my distonia with teratment, psiquiatrist, exercise and..... I put my music on and.... ICAN RUN just a little, i'm not trained i also have scoliosis an i must respect my body, but it gave a happines, an incredible hapiness, OMG!!!
wow, your dancing at the end made me cry, Mr Inspirational
Wow he's great suffer from the same disorder a lot more mild so I feel very lucky but the way he explained it was great for people to understand
So inspiring and beautiful. Thank you so much for sharing your story with us. Sending much love your way ✨🙏
Wow! Thank you for this. On Thursday, Feb. 23, I was shivering from a cold breeze. The shivering turned to spasms in my neck and head. By the next day, I could hardly speak because of a debilitating stutter that would set off a dystonic storm (I didn't know that at the time). I have a very limited set of positions I can use in bed to avoid spasms, because all sorts of things set off a storm: unexpected noises, talking, flashing lights or loud music.
Thank you for this video. I'm so glad to know that I'm not alone.
I'm about to turn 45, and I've been dealing with this for just 6 days. Somehow, during just those few days, I learned many "tricks," to put the storm on hold. I didn't know about the term "tricks" until quite recently. That was such a satisfying discovery. Knowing that other people have this and have their "tricks."
Thanks again. Great video.
This brings hope to me.Thanks.🕯️🙏💪💖
thank you, i have experienced this hell since 8 yi, we are together i will now start your routine, perhaps my hell will be lessened, thank you , we are not alone!
Thank you so much for making this video to the public.I am actually have this symptom after covid .
Me too
Me too.
Is it due to the vaccine?
Thank you for giving me hope.
I experience WICKED dystonia and would like to connect with you. I'll be at World Parkinson's Congress in Barcelona 2023 but hopefully we can chat prior to this big event. Your work is interesting and helpful. Also, I had DBS 1.7 years ago and it doesn't help much.
THANK YOU!
Very very Happy for You...
Praise God for the wisdom and strength and your determination to be back to normal, you are amazing and thank you for sharing your experiences with this Cervical Dystonia, those who are suffering form CD gives hopes and encouragement to do this kind of exedcises, your PT is so amazing, cam you share more of your exercises? My husband has Cervical Dystonia but we have no enough money to go for Physical therapy and your videos will be helpful to a lot aof people who has CD. Hope and prayed for complete healing for you, and we hope you can share more exercise. Thank you and God Bless 🙏
Ive had my dystonia since 2019 through 2023 now. And i had no idea dancing would be it. Seems like i could give it a shot.
How are you now?
Thank you!
Great! Thanks for sharing! No words... Only emotions!
I needed this ty ♥️
I've been living with dystonia for 6 years, there are days where I am completely normal, then there are days where it troubles me non stop. Just seeing someone else with the same disorder out there succeeding, doing what they love. Inspiring others. It makes me full of hope. I am going to work harder, push myself more and prove to myself if he Fredricco can do it, so can I.
Brilliant.
Increíble caso y aún más increíble la terapia estaba al alcance de la mano 😃
Superb!
amazing.
This is an inspiration. Thank you!😊
Thanks a lot Federico!!! You saved my life!!!!
What you did to cure?
My name is Kathy 57 years old your video give me hope🙏i love to dance ( i have neck dystonia)
Thank you Frederico. I am suffering and have been for a few years now. You have given me hope. I will now apply some of your techniques. Keep well.
Inspiring
amazing
Good on you dude, enjoy your new found freedom ♥️♥️♥️
It was playing the drums for me. I still live with Dystonia but the above also describes my story. Its now part of my life, not the arbiter of it.
Thank you for sharing your journey with us!
THANK YOU! GRACIAS FEDERICO POR LA ESPERANZAAAAAA!!!!
Amazing
This guy is South an authentic, beautiful speaker. So glad he has found relief.... watching more to see what worked for him!
What an absolute joy of a talk!! I'm so happy he found his way to dance!!! Totally shedding tears over here.
inspiring
I've never been so shocked watching a TED talk !
I cannot stop smiling. This just touched my heart so deeply.
How wonderful! I’ve had Spasmodic Torticollis since 2007 , but wasn’t diagnosed until 2010. I get Botox, but that doesn’t even help much. It now affects my gait.
Movement for Movement disorders works !
Thank you so much for brining the power of music and movement into the world of therapy and medicine. I am a therapist and am presently promoting HypnoGroove, a combined approach to wellbeing, of movement to music and meditation and I am hoping such powerful mediums will become recognised in all healthcare settings.
I'm a nurse with distonia, your work it's interesting for me.
+ana silva Hi Ana, So sorry late in getting back to you. I closed my just before Christmas but am still interested in focused mental attention and movement, though not sure as yet how I will develop this. If meditation can impact different areas of brain then using mental focus prior to and during to movement must have impact. Like some kind of internal brain stimulation. Have you checked out Anat Baniels work. I am convinced that the human system is an open system and hence be changed through the interaction with the environment and through using its own systems of rhythm and balance. Edel.
This is wonderful news! So much fun! Great talk & great fun! Thank you for this post!
No puedo parar de verlo una y otra vez!!! me emociona tanto Federico! eres un inspirador!! I'am Phd in Psychlogy... Maybe we could work together (ALL OF US) to tell the whole world, especially to doctors who loves botox, DYSTONIA ALREADY HAS CURE!. LET'S DANCE!
What kind of dance works?
P.s.......I love dancing.....and need to get back into it.......yey.....LETS DANCE PEOPLE!!!!
Cheers🎉
This is incredible! You are so inspirational. Thank you for sharing this with the world. Everyone needs to hear a message like this! xoxoxo
I have had dystonia since 2010 (it is so little-known even my autocorrect turns the word to “dystopia”). Feeling alone. Searching for remedy that does not in involve botox and muscle relaxants (both of which treatments I have tried and not found effective). I stumbled on this video. It gives hope for a way out of the condition and suffering.
Hallelujah for music man Hallelujah
I have been trying to narrow down a topic for my psychology capstone, I was interested in the seemingly automatic connection between music and body movement, "feeling the groove," after watching this I want to research this and similar disorders and how they can be helped with music and dance. So glad I found this, such an amazing story, the brain is an amazing thing
the man in the video who helped him put many drs to shame
Naturally found dance helpful!
This is great! I’ve just come back from a neurologists appointment who said I have Dystonic Tremor but haven’t been prescribed anything as I’m pregnant! After I give birth I plan to start dancing and yoga again! I would like to try holistic treatment before resorting to full pharmaceutical meds.
How are you doing now ...2022
...hope your okay ...your video is amazing 👏
Excellant story and presentatiin!
Presentation
Thank you for sharing.
Such a beautiful video! I was diagnosed with spasmodic torticolous 6 years ago!
Fantastic!!!! Great to see your progress Federico!
I was just diagnosed and they want botox and surgery. I am so glad I found this information. Thank you. (