Dystonia, smiling through the pain

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  • เผยแพร่เมื่อ 28 ก.ย. 2024
  • Everything at Costco is supersized, but the biggest thing in the store isn't for sale. Patti Pater's smile is tough to miss, and even tougher not to reciprocate.

ความคิดเห็น • 57

  • @EngineerCorner
    @EngineerCorner 4 ปีที่แล้ว +18

    She is a beautiful person. I was dx with dystonia recently. Life can change quickly, never judge. Thank you for this wonderful sign of hope. All the best, stay safe from Canada.

  • @janineoseman1469
    @janineoseman1469 2 หลายเดือนก่อน

    I’m a UK resident who has developed Facial Dystonia in middle age. I can’t tell you how helpful it is to see this publicity for what is such a distressing condition. Patti is an inspiration to us all! Well done and thank you to both of you for raising more awareness and educating people about Dystonia ❤️👏👏👏

  • @Easilyentertainedhere
    @Easilyentertainedhere 3 ปีที่แล้ว +19

    I have cervical dystonia. Yes, we still work full time. Please dont point out to us that we are shaking. We know. Please dont ask us if we have a toothache when we are holding our head or leaning our face or jaw on our hand. We are just like you just with a neurological issue that brings a lot of pain and discomfort. We are smart and can work very hard. Hugs to all.

    • @ateetsharma789
      @ateetsharma789 3 ปีที่แล้ว +5

      How do you that? I too have cervical dystonia ans focal Dystonia. I had to leave my job

  • @sarahespiritu8794
    @sarahespiritu8794 3 ปีที่แล้ว +8

    How sweet are these two!

  • @Stormy5475
    @Stormy5475 4 ปีที่แล้ว +6

    Such a beautiful and honest smile from the heart.

  • @CarolKennedy
    @CarolKennedy 2 ปีที่แล้ว +2

    Patty is the sweetest, kindest person. She’s definitely an inspiration to others with dystonia like myself. Thank you Patty for being strong and being you 💪 ♥️

  • @keirobangs6666
    @keirobangs6666 หลายเดือนก่อน

    she is such a nice person ❤

  • @theozman38
    @theozman38 3 ปีที่แล้ว +21

    Patty is such a sweetheart. Wow 😢 how can anybody ever make fun of this person?? Who the hell are you to be making fun of anyone. When she said this it pissed me off. I would have no problem hanging out with her. What a big heart !!

  • @emanuelzarate785
    @emanuelzarate785 ปีที่แล้ว +4

    I lost everything after my diagnosis. Including my mind. Look beyond.

    • @FullTimePatient37
      @FullTimePatient37 ปีที่แล้ว +1

      I might be losing my life to it because I'm having great difficulty breathing and eating..
      I wish we have a cure 😔
      I have a TH-cam channel

  • @omidmehdi
    @omidmehdi 3 ปีที่แล้ว +6

    i got dystonia in 2016 and had the DBS surgery in 2018 and in 2019 went to Germany for my master's degree

  • @sherylholcomb277
    @sherylholcomb277 ปีที่แล้ว +2

    I have generalized Dystonia by taking antidepressants after a cardiac arrest and stroke in May 2019. I understand a little of what you are dealing with. God Bless you 🙏🏼❤️😘

    • @LouellaMagtajas
      @LouellaMagtajas ปีที่แล้ว

      Hi sorry but how does it felt? I have spasm at the back of my neck.

  • @farkhondehrezaie7725
    @farkhondehrezaie7725 2 ปีที่แล้ว +3

    I have cervical DYSTONIA, it’s just horrible. I feel her pain.

  • @sonyaj.6736
    @sonyaj.6736 11 หลายเดือนก่อน

    Such a strong, positive young woman!

  • @Nightwolf3536
    @Nightwolf3536 ปีที่แล้ว +2

    Mine happened in 2019 at dinner i lt kicked in out of nowhere and till 2023 it still goes on. Been to chiropractor and tried massage guns and tens units, foam rollers and ice packs, heating pads, and you name it. Mine happens when theres crowds of people everywhere, but when im alone in my room its fine it goes away, its weird, i even went to the get an x-ray examine and they said nothing but that i have a spinal deformation a little bit. So now when i go see and talk to a doctor im gonna tell them about it. If thats ever happened to you guys or know anyone who has had it let me know. Cause i would like to hear there story.

    • @10and2
      @10and2 11 หลายเดือนก่อน

      You will need to see a neurologist. A regular doctor is not qualified enough to know and most never heard of it. You can get Botox injections that help the muscles relax and certain medications they use for multiple sclerosis and Parkinson’s. It is permanent and you will definitely need treatments. If you don’t the muscles will get stronger and harder to treat. Also you will have major pain from the muscles contracting constantly.

  • @kalani1987
    @kalani1987 4 ปีที่แล้ว +2

    Patti, I wish you and your boyfriend the best

  • @angelataylor2049
    @angelataylor2049 ปีที่แล้ว

    There are some really horrible people. I wish you all the best and happiness. Take care.

  • @Thecatnamedkiwi
    @Thecatnamedkiwi 3 ปีที่แล้ว +2

    I had a distonic reaction and it was by far the scariest most painful thing I’ve ever gone through I have ptsd from it

  • @andrasmatyiszevo7849
    @andrasmatyiszevo7849 2 ปีที่แล้ว +1

    once in the ER they gave me an intramuscular injection of lorazepam plus chlorpromazine. I'd say a good 12 hours later, after the lorazepam had worn off, I was sitting at the walk-in clinic for a bad cough I had when I started pulling faces like this poor woman, completely out of my own control. When I was finally seen I managed to stutter out "This...isn't why I'm here today.....but I cant stop....clenching my jaw...." They looked up the meds I had been given the previous night and gave my some I.M. diphenhydramine and within a half hour my face and neck stopped contorting.

    • @frankmuller6834
      @frankmuller6834 ปีที่แล้ว +1

      Why are they always change meds or add meds to fight the Side effects instead of just stopping the horrible treatment with those meds?

  • @frenchtoast7742
    @frenchtoast7742 ปีที่แล้ว +1

    I havé Dystonia where I can’t walk long distances or stand . I’m on disability 😢

  • @martinsanchezjr8774
    @martinsanchezjr8774 2 ปีที่แล้ว +1

    I have dystonia to and I have a deep brain stimulation it helps a lot but I can’t do nothing like I can’t have a girlfriend and she is lucky to have a boyfriend 😢💔💔😢😢

  • @awakenedsoul
    @awakenedsoul 3 ปีที่แล้ว +4

    Many dystonia treatments.... it's caused by misalignment of tmj and usually happens at birth..then worsened as the adult molars come out

    • @scrapezz3204
      @scrapezz3204 3 ปีที่แล้ว

      I’ve got all of that what you just said right there, will taking out the molars help it?

    • @awakenedsoul
      @awakenedsoul 3 ปีที่แล้ว +1

      @@scrapezz3204
      No you need to rebalance it.
      Watch these TH-cam channels
      Dr. Lee South Korea dystonia
      Starecta rectifier

    • @marinmansions2240
      @marinmansions2240 ปีที่แล้ว

      Yes this has happened to my 11 year old son a couple of times. We were fortunate to find a dentist who treats these conditions. My son Is Hypermobile, and has cervical spine instability, and TMJ. When he gets too far out of alignment we see the Dystonia come back. He also sees a chiropractor regularly. She does gentle adjustments to keep him aligned, but every once in a while if he’s playing a sport and takes a hit, that will send things out of balance again.

    • @awakenedsoul
      @awakenedsoul ปีที่แล้ว

      @@marinmansions2240
      How's his eyes?

    • @marinmansions2240
      @marinmansions2240 ปีที่แล้ว

      @@awakenedsoul Good right now, except he is near sighted. He’s had severe double vision and flashes of light in the past. We are waiting for an appointment with the Elhers Danlos Clinic at Sick Kids in Toronto. He is definitely very hyper mobile, but hasn’t been officially diagnosed with EDS yet.
      Pediatricians wanted him to go to a psychiatrist and suggested meds might be helpful. I told them his history with Cervical Spine Instability, and they don’t seem to know what to do about that, other than meds. The dentist, chiro and osteopath know. I am sure my son is not the only one going through something like this.

  • @sapreebenzoh
    @sapreebenzoh 2 ปีที่แล้ว +1

    I wanna hug her! I’d love to talk and learn more about her disease not make fun

    • @FullTimePatient37
      @FullTimePatient37 ปีที่แล้ว +1

      I have generalized Dystonia my TH-cam channel is about my daily life with it..

  • @misanthr0pic
    @misanthr0pic 2 ปีที่แล้ว +2

    dystopia sucks. got it as a reaction to haloperidol…… didn’t get an antidote with it….. terrible.

  • @FullTimePatient37
    @FullTimePatient37 ปีที่แล้ว +1

    I have generalized Dystonia I can't even walk or talk or feed myself or talk... it's on my TH-cam channel..

  • @SeanNorsee
    @SeanNorsee 2 หลายเดือนก่อน

    medication induced dystonia. thanks pharma

  • @icammeronmunger
    @icammeronmunger ปีที่แล้ว

    How could they make fun of her! Obviously its not drugs!

  • @AMG749
    @AMG749 ปีที่แล้ว +1

    I was having my first breakout today i experience it had to take xanax again for it, antisycotics caused it with sista invega

    • @tropisk.
      @tropisk. ปีที่แล้ว

      Get out of it. Cbd oils instead perhaps? Don't end up getting parkinson because of the "medication"

    • @AMG749
      @AMG749 ปีที่แล้ว

      I am trying

    • @Nightwolf3536
      @Nightwolf3536 ปีที่แล้ว

      I used cbd gummies and stress gummies sorta helped but not really. I was thinking of trying muscle relaxers, or try a neck brace for my neck dystonia. 🤔

  • @FullTimePatient37
    @FullTimePatient37 ปีที่แล้ว +3

    I have generalized Dystonia I can't even walk or talk or feed myself or talk... it's on my TH-cam channel..

    • @partialperson
      @partialperson 4 หลายเดือนก่อน

      I am so sorry, I am degrading pretty fast and pray I never have to suffer like you. Thank you for being open about!

  • @gurgy3
    @gurgy3 3 ปีที่แล้ว +6

    When the reporter met her at the door I was thinking, wow she’s really friendly. Then they kissed and I was like 😮. But then she said they were sisters 😆

  • @lovewenwin
    @lovewenwin ปีที่แล้ว +6

    Dystonia is often medically induced. Psychiatric anti-seizure and anti-nausea medications often cause dystonia and akinesia sometimes you can get over it pretty quickly but also often it is permanent

    • @frankmuller6834
      @frankmuller6834 ปีที่แล้ว +2

      Don't forget benzodiazepines.

    • @katelynfe
      @katelynfe 4 หลายเดือนก่อน +1

      Uhhh mine developed after i ate a starbucks coffee?? Mightve flared my mcas and pots

    • @BorisBirkenbaum
      @BorisBirkenbaum 3 หลายเดือนก่อน +1

      Yeah hers was probably also medication induced from the seizure medication. Pretty sad.

    • @BorisBirkenbaum
      @BorisBirkenbaum 3 หลายเดือนก่อน

      ​@@katelynfemcas and pots are mercury poisoning you should look into the cutler protocol..

  • @joshyemanuelbacenet5249
    @joshyemanuelbacenet5249 2 ปีที่แล้ว +3

    In my case it started when I was 14 and believe me this condition is horrible

  • @zoicomeau3063
    @zoicomeau3063 5 ปีที่แล้ว +5

    She AMAZING God bless her🙏😇🌠

  • @mammadeuces6242
    @mammadeuces6242 3 ปีที่แล้ว +2

    I have dystonia and it effects different parts of my body. It was in my feet, then neck and now it’s been moving to my face, I keep making faces too. I was recently diagnosed with a brain disorder called FND. I have all the symptoms of people with Parkinson’s, MS, Stroke, and Epilepsy.

  • @getachewmuche3914
    @getachewmuche3914 8 วันที่ผ่านมา

    😮 am living in Ethiopia , and i have the same sign/symptoms with this video ....could you give me a hint for treatment pls??

  • @truegemrn
    @truegemrn 2 ปีที่แล้ว

    She’s so pretty. ❤