- Видео 342
- Просмотров 2 219 796
Chronic Advocate
Добавлен 10 ноя 2012
I am a 22 year old disability advocate who uses this channel to talk about PANDAS/PANS, Lyme, Tourette's, Autism, and Chronic illness. I hope you find something here that helps!
Disclaimer: I am not a medical professional, the information presented on this Channel is not to be used as a substitute for a diagnosis or treatment from a qualified medical professional. This is to be used for educational purposes only. For medical advice, please consult a doctor / qualified medical practitioner. I do not claim to cure, mitigate or treat any condition. No content on this website should be taken as medical advice.
Useful links :
Ticcers Unite Website: www.ticcersunite.com
Disclaimer: I am not a medical professional, the information presented on this Channel is not to be used as a substitute for a diagnosis or treatment from a qualified medical professional. This is to be used for educational purposes only. For medical advice, please consult a doctor / qualified medical practitioner. I do not claim to cure, mitigate or treat any condition. No content on this website should be taken as medical advice.
Useful links :
Ticcers Unite Website: www.ticcersunite.com
ERP For Tics - My Tourettic View
ERP - Exposure and Response Prevention may be helpful for solving dangerous tics short term to keep someone safe, but I do not believe it can morally be used as a long-term primary tic management strategy as it is akin to tic suppression. Too many therapists fail to listen to people with tics and refuse to believe us when we say it harms us. CBIT can be helpful for many with Tourette's, but I believe there has to be much less focus on the ERP element of it.
Tags / keywords: Tourette's, Tourette Syndrome, CBIT, tic suppression, suppression therapy, psychologists, neurology, neurological condition, psychology, tic disorder, PANDAS/PANS,
Tags / keywords: Tourette's, Tourette Syndrome, CBIT, tic suppression, suppression therapy, psychologists, neurology, neurological condition, psychology, tic disorder, PANDAS/PANS,
Просмотров: 119
Видео
Invalidation In The Autism & Wider Neurodivergent Community (The Over-Focus on LSN)
Просмотров 15521 день назад
People with medium and high support needs are often marginalised from the mainstream neurodiversity movement - having their struggles watered down and ignored. This verges into toxic positivity. People make out that these conditions are not disabilities, when we need recognition of being disabled so that people take us seriously. Many people automatically say that you "see Autism as a tragedy" ...
Do NOT Use The Neurodiversity Movement As An Excuse For Toxic Positivity
Просмотров 182Месяц назад
Do NOT Use The Neurodiversity Movement As An Excuse For Toxic Positivity
How The Social & Medical Model Of Disability Interact
Просмотров 128Месяц назад
How The Social & Medical Model Of Disability Interact
Medical Gaslighting, Medical Inequality, & The State Of The Healthcare System
Просмотров 1723 месяца назад
Medical Gaslighting, Medical Inequality, & The State Of The Healthcare System
The Integrative Approach - Why I Use It & How It Helps Me (resources in description)
Просмотров 2803 месяца назад
The Integrative Approach - Why I Use It & How It Helps Me (resources in description)
Tourette Syndrome Management - Ethical Considerations and Issues
Просмотров 3225 месяцев назад
Tourette Syndrome Management - Ethical Considerations and Issues
Are Private Clinics "Cashing In" On False Lyme Diagnoses? (read caption)
Просмотров 2028 месяцев назад
Are Private Clinics "Cashing In" On False Lyme Diagnoses? (read caption)
OCD Not Responding To ERP/CBT? Factors To Consider
Просмотров 2519 месяцев назад
OCD Not Responding To ERP/CBT? Factors To Consider
PANS Symptoms Not Improving Long-term? Factors To Consider
Просмотров 35110 месяцев назад
PANS Symptoms Not Improving Long-term? Factors To Consider
POTS Awareness Merch Unboxing - Health Harbors
Просмотров 20511 месяцев назад
POTS Awareness Merch Unboxing - Health Harbors
It Isn't Always Just A "Different Way Of Being"... Neurodiversity Terminology Talk
Просмотров 378Год назад
It Isn't Always Just A "Different Way Of Being"... Neurodiversity Terminology Talk
The Medical System Wasn't Designed For Chronically Ill People
Просмотров 233Год назад
The Medical System Wasn't Designed For Chronically Ill People
The Negative Aspects Of My Autism Diagnosis (With PANS & Tourette’s)
Просмотров 294Год назад
The Negative Aspects Of My Autism Diagnosis (With PANS & Tourette’s)
My Experience In Mainstream School With Tourette’s, Autism, & OCD
Просмотров 478Год назад
My Experience In Mainstream School With Tourette’s, Autism, & OCD
Sensory Office Room Tour | How It Accommodates My Neurodivergent Needs
Просмотров 322Год назад
Sensory Office Room Tour | How It Accommodates My Neurodivergent Needs
Why You Should Listen To Neurodivergent People Over The Self-Proclaimed "Specialist" Doctors
Просмотров 342Год назад
Why You Should Listen To Neurodivergent People Over The Self-Proclaimed "Specialist" Doctors
Why Behavioral Modification "Therapies" Didn't Help | Rages & Defiance in Tourette’s & PANS
Просмотров 226Год назад
Why Behavioral Modification "Therapies" Didn't Help | Rages & Defiance in Tourette’s & PANS
Purple Toes?! What Is POTS & Why Is It So Often Misdiagnosed As Anxiety?
Просмотров 650Год назад
Purple Toes?! What Is POTS & Why Is It So Often Misdiagnosed As Anxiety?
What You NEED TO KNOW About Lyme Disease & Co
Просмотров 476Год назад
What You NEED TO KNOW About Lyme Disease & Co
Tourette's VS PANDAS/PANS | The Differences
Просмотров 1,4 тыс.Год назад
Tourette's VS PANDAS/PANS | The Differences
Reacting To My First TEDx Application From Age 16 (Cringe)
Просмотров 203Год назад
Reacting To My First TEDx Application From Age 16 (Cringe)
Getting An MRI Scan With Tourette's | What It Was Like
Просмотров 614Год назад
Getting An MRI Scan With Tourette's | What It Was Like
Reacting To My Childhood YouTube Videos (I Was A 10 Year Old YouTuber)
Просмотров 216Год назад
Reacting To My Childhood RUclips Videos (I Was A 10 Year Old RUclipsr)
Responding To Hate Comments & Funny Comments
Просмотров 261Год назад
Responding To Hate Comments & Funny Comments
Ableism: Thoughts From A Disabled Young Adult
Просмотров 396Год назад
Ableism: Thoughts From A Disabled Young Adult
Does Meditating To Weightless By Marconi Union Decrease Blood Pressure In Neurodivergent People?
Просмотров 220Год назад
Does Meditating To Weightless By Marconi Union Decrease Blood Pressure In Neurodivergent People?
My Chronic Illness & Disability Support Tools
Просмотров 6252 года назад
My Chronic Illness & Disability Support Tools
Stop Pressuring Autistic People To Act Neurotypical (unless a life or death situation)
Просмотров 3812 года назад
Stop Pressuring Autistic People To Act Neurotypical (unless a life or death situation)
I love you
I stim all the time (I’m autistic) and in class I will just move my right leg up and down with my foot when I sit for too long to regulate myself in class💀💀
Wait this is a stim? IVE BEEN DOING THIS FOR YEARS
Hopefully no haters this time?😅
I did CBIT to learn how to redirect my most aggressive, destructive, and hurtful tics and it really helped me reduce injuries and stopped my from breaking objects. I can only imagine what would have happened if I did ERP instead. I think my life would be much worse for it
Redirection is great - trained suppression not so much 😬
They never gave you a tilt table test
A lot of doctors prefer the stand test as it is more applicable to real life situations - some people may have a high heart rate in the tilt table test due to anxiety so the stand test is used to mimic a normal day to day situation.
womp fucking womp, just don't be autistic
Your tics look just like mine, I think I’m gonna go back to Botox, that helped A LOT for my facial tics.
BO6 Cod I always use stims
there’s nothing more depressing and isolating than being misunderstood☹️
💙
@ChronicAdvocate as much as it may feel like it sometimes, I promise you’re not alone❤️
i get headache only from.wstching her rocks back and forth😮 is that normal?
Wise words 👌 points well made, and it's kinda mind-blowing at the same time that this information isn't more widely understood and accepted. Beautiful to see you doing your thing so well with so much love and inclusion 💕 🐱
I'm sorry people are not understanding of your condition, I can relate, your not alone.....
@@RayTroubleBuddy Yeah my tics make me grunt and scream a lot
Does weed help with your tourettes syndrome?
helps me man...., anything that slows you down is good.
I haven't actually tried it - I'm open minded to it and I'm happy that more clinics that offer it are opening up in the UK but it doesn't seem safe for me to try due to my past experiences with psychosis and family history of Schizophrenia.
@ChronicAdvocate I feel you yeah it's not for everybody my brother got schizophrenia and you should check out a supplement/medication called NAC it's good for tourettes syndrome
I got Lego chewy And I got a crystal chewy And a yellow chewy My My grandma bought it for me from amazon my grandma chewie necklaces , down below Chewy necklaces I have autism spectrum Lachelle😊😙😙😀😀😚😀😚😀😚😁😁😚😁😚😀😀😉😀😉😀😉😉😀😉😀😉😀😉😀😉😀😚😀😉😀😉😀
My mom won’t let me get one because it’s what an “animal” would do but like I NEED IT!
Thank you for this video <3
Mimimi Darius
I know I have something wrong with me. Iv made funny faces for years scrunching my nose then immediately my eyes wide open and curling my lips over my teeth with my mouth wide open. I knew I did it and no one ever ask why I was doing it so it just became like breathing to me. but today my wife recorded me opening Xmas presents and I was shocked when I watched the video at how bad I was doing it in the video and I was so embarrassed knowing that’s what people see when I do it but I can’t help it! I couldn’t find anything online about facial tics. You’re the only person that I could find that was close to showing the same tic that I have.
impeccably put as always 👍🏻 have a lovely christmas won’t you🎄🤗 are you doing anything nice?
Good video, no one should be able splained into not using the language they want to use for their own disability.
Sometimes I hate my disabilities. That doesn't mean I think people with disabilities are less valuable, and it's not always a form of internalized ableism. Sometimes I love my weird brain and my wonky eyes, and I wouldn't have it any other way. That doesn't mean I don't acknowledge the challenges and difficulties, or that I engage in toxic positivity. All feelings are valid, because they are feelings, and we can't help what we feel. Thanks for making this video!
All disabled people of every type need to band together and take care of each other and quit attacking people of other types that are disabled. The physically disabled get attacked all the time and none of us are more disabled than anyone else and no one needs to prove that they are more disabled than anyone else and I don’t know why some disability people think that they need to attack other groups of disabled.
I have metabolic disorder ..was born with it...ive found that Coprolalia creeps up when i metabolically need a boost...my system is in fight or flight all day...but i only do it when my system needs the BOOST OF ENERGY... i say hateful things to metabolize myself until im finished...mopping the floor im ok til the near end then ALL THESE hateful things sprout from my mouth as i use the energy to complete my tasks...😔 the older i get the worse it gets...
😢💔
sorry to hear that i hope your days are going well
I stim all the time when I’m really excited I Rarely stim when I’m Angry
Really I do when I’m angry
I think everyone should be aware FUCK….SHIT….of this condition and have patience ASS…TITS
Bro ticked once and then didn’t have it for the whole video 🤨
YESSS! I am honestly so fed up with CAMHS + child development centre + places like that 😭😭
❤
❤
yep. i wanna destroy the world now. Haha. I have internalized the beast, and it has come for the world! I am fucking sad as Shit man
Why does this happen?
Thank you spreading awareness and advocating for yourself and others
Same thoughts as yours! Nothing to add here, you said everything that’s important
i do this but more intense and im not autistic im just insane
This is exactly what I have and thought it would be my OCD :o
Thank you so much sweetheart. I’m 67 and my tic is humming. Not a song or any recognisable tune just a neh neh neh hum. It got worse when my Husband passed. It’s embarrassing and I only realise I’m doing it when someone points it out because it’s annoying. I will try your suggestions. I’ve looked at a few on line things about tics but you’ve actually given me some pointers. Best wishes, from Australia 🥰🦘🦘🦘
THANK YOU! People like you give me hope. We need to speak more about that
*I want to ask if this is an irrational thought and compulsion, but warning: this is an awkward subject.* When I go two and can't perfectly wipe _it_ clean, I rinse off in the shower. My intrusive thought is the water flows down the back of my legs and the shower floor, contaminating both my legs and bare feet. That's why I always put body wash on my floor towel to step on and wipe my feet, and then I use my body towel, after drying off, to body wash my back legs. Is that method too compulsive? I'm VERY careful when I put on my socks, and I consider them a "germ shield" in case my feet are still dirty in any way.
That is quite an elaborate compulsion but also a very common one for people to have. Do you work with an ERP/CBT therapist who may be able to help?
@ChronicAdvocate Last night I had difficulty wiping, and I showered _there_ this morning. I'll delete this conversation if it's too awkward for you, but to ask first, does this mean contaminated water goes down my legs and feet and I should indeed Body Wash them? Or is that an overreacting compulsion? I sprayed disinfecant on my socks after the shower and disinfected and Lysoled the shower floor. In the non-OCD perspective, what should a person do after rinsing _there_ in the shower? I can't tell reality from compulsions anymore when it comes to sanitation.
I am diagnosed with OCD but I am not sure if some Parts of it are actually tics. Like some ways of blinking, coughing, breathing etc. I have that since childhood and I am able to supress but it is very uncomfortable, then I forget to supress because it is fast and automatic. I also have things where I dont know if it is classic OCD: I change the order of letters, Numbers, colours etc in my mind - when I read for example but I do it ALL THE TIME. It feels Like a process in my task Manager that is always active. It has the aim to feel good/right. Most of the typical OCD things I dont have. Have you ever Heart of These things?
My Tourette's was originally misdiagnosed as being part of my OCD - the blinking, coughing, and breathing you describe are common tics and the uncomfortable sensation you feel is a premonitory urge. More than half of people with Tourette's have OCD so you likely have OCD plus a tic disorder like Tourette's.
@ Thank you a lot! Do you know people who have the same things as part of OCD where it’s actually OCD?
Those yellow flowers that you passed on that really spiky bush smell like pineapple by the way! Also hello from an undiagnosed person with tics :)
already only 15 seconds and THANK YOU for the mention of vomit warning, my sister with severe emetophobia was in the room
Did the lyme treatment s treat the mcas what it causes
Any tips on how to control severe vocal tics without medication?
My 8 year old suffers from tourettes on a daily basis. It is difficult to watch. We have been to neurologist, multiple psychologists, CBIT therapy. Non of it worked. He takes medication but it doesn't help much. He has violent body jerks that interrupt his school, playtime, everything. The USA really needs to spend more time, money, and research on tourettes syndrome. We just give him love and support.
As someone with touretts. It can be caused by many different things such as stress, anxiety, excitement, stimulation... You just have to find the main cause
I'm sorry to hear he is struggling so much - the book "Stop your tics by learning what triggers them" by Sheila Rogers Demare is great and may be a place to start. When my antipsychotics stopped working and CBIT wasn't suitable for me it was food sensitivity elimination (often done with the help of an environmental medicine physician, functional medicine doctor, or nutritional therapist) that stopped my tics for around 2 years. Also look into PANDAS/PANS as many people who are diagnosed with severe TS end up having PANS and need antimicrobial and anti-inflammatory intervention. The ACN latitudes blog may be helpful too.
@@ChronicAdvocate i'ma get that book, thc
It's absolutely... well, disgusting how many get treated, or not treated to be specific. It blows my mind that this really is going on.. It's terribly dangerous. Power in the wrong hands hey, patients having to clear the mistakes up with help of charities...what can you say. Together we will set the textbooks straight 🫂 try at least. You are a hero btw, keep speaking your wisdom and the truth and you are very fair too btw, to both sides. And there are gems of doctors offering support, but the system does need a total overhaul 👍
I was in a&e after getting hit by a bus last year. A doctor came in to see me and I told him that I have non-epileptic seizures because I thought that would be important information. His response was, "Oh, I don't believe in all that". Scary.
Why is the word tics blocked out a bit?
I think it's trigging udk how but that's what I think