Відео

What’s FND ?

Keep going!! I believe in you

Praying for everyones' speedy FND Dystonia recovery. Even myself 😢

Thank you for such a great informative video, so if someone has a positive Hoover sign does that mean they have FND?

I believe in you!

Love to see it🙏

💪

Love to see warriors ❤🎉

What happened? Best of luck

You got this! ❤

En qué lugar es ese, que hacen terapia para Dystonia???

I love that you said you regulate the ans. Is that a weighted blanket that you’re using?

Wow!! This is incredible to see! Thank you for sharing your journey. I have FND, too. It helps seeing what's possible ❤ I have an intake next week for a functional movement disorder clinic and I'm feeling hopeful 😊

Dystonia #formybff ‼️💔 due to trauma of her 2 stillbirths

i have fnd. i used to bomb hills when my legs worked. i went 60mph downhill it was so freeing. maybe i can do streetluge or wheelchair sports now on?

Do you think older people have a good chance of getting better with the right mind set, I was diagnosed after first having a vial infection then took into hospital after a 48hr severe migraine in which i experienced facial spasms then limb weakness and fatigue

The hell does this train tho

Great video! How long should I use the TENS for focal dystonia retraining, and how many times daily? And my TENS device doesn't have an alternating mode. Should I buy one with that mode?

This is a great live video, thank you for your explanation!

Dystonia

Excellent presentation. Unfortunately Functional Neurological Disorder remains a psychiatric diagnosis in the strictest sense of being included in the DSM as published by the American Psychiatric Ass'n and included as a psychiatric etiology while diseases like cancer, heart disease can be mentioned in the DSM but not in etiology but rather having symptoms such as depression or anxiety ie functional overlay, if you will. This recent commentary published in The American Journal of Medicine, see reference below, indicates that functional neurological symptoms can be part of the medical gaslighting pheneomena in healthcare that is receiving more attention recently. Hopefully sooner rather than later FND will be removed from the DSM as etiologically a psychiatric mental disorder. "In reality, “functional” neurological symptoms or even florid psychiatric manifestations can often be caused by an underlying organic etiology, but get misdiagnosed as primary mental health conditions due to physician ignorance and inadequate investigative efforts.9" Source: Isaac KS Ng et al. Medical gaslighting: a new colloquialism. Am J Med. 2024 Jun 25:S0002-9343(24)00396-6.

There is absolutely a link, 100%. FND is the ultimate burnout, resulting from the unbearable burden of incessant neurotypical demands on a neurodivergent brain and nervous system. More formal studies need to be done. Under diagnosis for ASD and FND, particularly in women, means the numbers of people affected are massively under represented in both cases. I have lived experience of both. I have also noted over representation of FND in nurses, support workers, and other allied health professionals. PS . Great info, but dog barking is very distracting!

Wow! I love the story of how you found Julie❤!

Thank you!!!! Sensory modulation issues are highly prevalent in the FND community, yet assessments/treatments options are rare. Great video!

I would like to join the newsletter, thanks

I have FND PTSD and PNES with autoimmune stuff. Trauma subtype is present. I'm waiting for approval to access a team. This is so helpful to see these studies. I'm curious if studies are going on that I can join? I'm eager for the newsletter. TY for sharing, I feel so alone and misunderstood. I'm eager to go to UC Davis. My medical experience in Butte County CA is not really positive. You give me hope!❤

Maybe impaired interoception explains a lack of self-agency.

Thank you. I recently started wearing a weighted vest for short periods and am amazed at how it has helped me ambulate better.

Treatment please

Thank you for busting another harmful FND myth!

Hola! Sin entender del todo bien el idioma, es el mejor vídeo que he visto sobre d cervical. Llevo 12 años con d cervical, ojalá pudiera hacer algun programa de rehabilitación online con vosotros, si me lo pudiera permitir, en España un administrativo no gana mucho y no tenemos clínicas como la vuestra, los que tenemos distonia tenemos que pagar todos los tratamientos y es frustrante no encontrar gente que sepa tratar esto, … he hecho muchas cosas hasta ahora pero estoy desanimada, murió mi suegro y yo empeoré por ansiedad, dejé de hacer yoga y perdí la motivación… cada día haciendo ejercicios sin avanzar. Gracias y Felicidades por transmitir tanta positividad y optimismo.

I use a cane as well as a rollator. I wouldn't be able to do much without either one. I use the cane at home and rollator when I go out.

Love my 10 lb weighted vest that also wraps for compression, calf sleeves, lap weight, gum drop fidget, noise cancel earplugs/headphones when I need them. Use 1 loftstran crutch or toe up brace all these when needed along with kinesiology tape. Funny how light tape provides so much input. I accept sport chair so I can play pickleball along with a mono ski to enjoy the slopes. Find a fan vest helps when hot so can last longer.

They thought I had FND 🤬 I ended up having Parkinson’s disease. It almost cost me my life! These Dr are quick to diagnose you with this disease when they can’t diagnose with anything or they just don’t know! Be very careful with this diagnosis! YOU KNOW YOUR BODY ! ADVOCATE FOR YOURSELF! DONT ALWAYS BELIEVE THIS DIAGNOSIS! If it happened to me it can happen to you ! Misdiagnosis of this disease is very common and people suffer for long periods of time until they get properly diagnosed with a REAL DIAGNOSIS!

For me weed gets rid of my symptoms. It's like late stage parkinsons, smoke a dube and I am almost back to normal

Treatment please?

Hola! Tienen App de entrenamiento online para los que vivimos en otros países? Gracias

Audio stopped about 10:45. Even the transcript stopped about there.

Tell us the treatment

19:20 - Delayed onset of movement disorders as a possible indication of the brain recovering from brain injury. 🤯 I love that conjecture! Migraine as a cause of increased nervous system sensitivity. 🤯 So many great nuggets in here, thank you for sharing! I often wonder if functional movement disorders could be part of prodromal disease states such as in multiple sclerosis or Alzheimer’s disease, and whether FND could be used to help treat disease earlier to reduce disease severity. Do you have any thoughts or insights on whether this could be possible?

Way to go! I hope to make it down there someday because my PTs do not have your rhythm. Lol.

A person with a good psyche who dislikes one part of an activity may avoid doing it by inventing a reason not to do it. This is the same reason not all FND patients appear to have psychological problems - the FND itself helps them avoid the problem. The fight/flight response can be a conscious chosen response or a sudden out of our control reactive response. If FND is the new name for Conversion Disorder or Dissociative disorder are we now to presume that such illness as we knew it does not now exist? How can we believe the mind/body connection can be completely outside of our control on every occasion when to believe such a thing surely implies recovery would never be possible because we could never regain conscious control of our own mind. Good luck to all patients and please believe however medics describe FND always remember to think that recovery is a possibility.

Thank you so much! I developed this after vestibular neuritis. I made progress but then after getting bppd it bothers me a lot now. I visit a psychiatrist and she wanted me to enter a commitment and acceptance therapy. I honestly struggle a lot because I have a lot of post exertional malaise still it seems. But I'm exited, I believe this can also go away again and I will be able to work again. I'm still just unsure about what to do to become better... I will watch your content ❤

dystonia

dystonia

Dystonia

I get so tired of people saying, "Oh, that happens to me all the time (10 to 15 times a month)" when it happens to me 10-15 times every half an hour.

Audio stopped about halfway through

Hello madam and sir! May I ask where I can buy this device? Thanks

Newsletter to be sent to