Wing-Beating Tremor in Creutzfeldt-Jakob Disease (CJD)

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  • Опубликовано: 18 окт 2020
  • A 67-year-old man with progressive ataxia and dysarthria was diagnosed with Creutzfeldt-Jakob disease based on genetic testing. This video illustrates notable physical examination findings of negative myoclonus and a severe, low-frequency, high-amplitude wing-beating tremor elicited by sustained left arm abduction with flexed elbows and palms facing downward. The tremor is classically attributed to Wilson disease. Go to ja.ma/3djszUx for complete case details and discussion.
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Комментарии • 177

  • @JAMANetwork
    @JAMANetwork  5 месяцев назад +19

    Click ja.ma/3djszUx to read "Creutzfeldt-Jakob Disease as a Novel Cause of Wing-Beating Tremor" in JAMA Neurology.

  • @m.streicher8286
    @m.streicher8286 Год назад +2005

    This man allowed himself to be filmed in an incredibly vulnerable state for the betterment of medicine. He's stronger than I'll ever be.

    • @finnm.2582
      @finnm.2582 3 месяца назад +16

      Kreuzfeld-Jakob Disease is sadly a death sentence…

    • @AirWick694
      @AirWick694 2 месяца назад

      prions are horrible. no permanent cure is known for any prion caused diseases

  • @Quandussy
    @Quandussy 3 года назад +1174

    Poor dude is fully cognizant and aware of everything. May he rest in peace.

  • @bunnybeartea5377
    @bunnybeartea5377 3 года назад +1860

    i feel so bad :( he looked so scared and embarrassed that these things were happening to him and he couldn’t control it :( the worst part was when he took his other arm to stop it 😢 poor guy :C

    • @tishkerrville8942
      @tishkerrville8942 3 года назад +21

      i know right 😢

    • @pauloeduardo4769
      @pauloeduardo4769 3 года назад +177

      The worst is that he won't survive. This disease has no treatment. :(

    • @cryonic8215
      @cryonic8215 3 года назад +63

      @@pauloeduardo4769 At least he’ll be at peace

    • @frid7434
      @frid7434 Месяц назад

      and the fact that he answered so quickly and with that tone of sadness in his voice at this point in the video 0:52

  • @matthewriffel188
    @matthewriffel188 7 месяцев назад +210

    It’s tough to watch, but we should also offer him our gratitude, and not just sympathies. Creuzfeldt-Jakob is rare but inevitably fatal. These videos with different medical signs are not easy watching, even for med students, but important. The only way we will be able to treat or cure this illness is through study and he volunteered to assist with that, in a very public and vulnerable way, for the benefit of medicine and mankind. That’s a courageous, kind, amazing thing to do for your fellow human beings. It’s heroic and should be honored. I celebrate him for that.

  • @McWheeler93030
    @McWheeler93030 3 года назад +847

    Thank you for posting this video. While my dad was sick with this horrible disease I made it my effort to inform whom I can host this horrific disease

  • @mancagruden7287
    @mancagruden7287 2 года назад +415

    Thankful for this, after watching this we figured out that my mom has it too . Mom passed away because of this 3 weeks ago. It was horrible watching her dealing with this disease for whole family. May God be with everybody dealing with this thing.❤️

    • @vs_vulcan
      @vs_vulcan 2 года назад +30

      same with me, mum passed on the 10th of December

    • @user-gk8wc9rs8n
      @user-gk8wc9rs8n 4 месяца назад

      How long your mother survived aftr diagnosed this, my father also diagnosed cjd

    • @krish-ut9de
      @krish-ut9de 2 месяца назад

      rip

    • @sionlewis1258
      @sionlewis1258 Месяц назад

      3 months with my mum after diagnosis, very sad

  • @dogwithawitchhat
    @dogwithawitchhat 3 года назад +444

    That must be terrifying to see these movements from your own body that you don't mean to do, I feel so bad for this guy

  • @gustavgurke3389
    @gustavgurke3389 2 года назад +330

    Just because of some proteins deciding to fold a slightly different way. Truly horrifying pathogen and disease, rest in peace my dude

    • @somnuswaltz5586
      @somnuswaltz5586 2 месяца назад +3

      Show some respect. He isn't your damn "dude" bro

    • @frid7434
      @frid7434 Месяц назад +7

      @@somnuswaltz5586 at least he's saying rest in peace? he could be saying "haha look at that dumb tremor" like a moron but at least he paid some respects

  • @mell143
    @mell143 Год назад +94

    Right now, my grandmother has this. She has always been sweet and kind but now she can’t even remember me and others. I am crying right now because the doctor said she only has a few months to live. Maybe you guys can help pray for my grandmother

    • @Hi22213
      @Hi22213 7 месяцев назад +11

      My father is also experiencing same symptoms. It is very sad and he is only 58.☹️

    • @rrealaliee
      @rrealaliee 3 месяца назад +4

      its been a year..

  • @user-hm4zx3du6v
    @user-hm4zx3du6v 2 года назад +95

    i cant imagine the helplessness the patients of this disease feel when they are informed that there is no cure and that they are bound to die in a relatively short amount of time

  • @MZSTL1020
    @MZSTL1020 2 года назад +142

    A friend of mine died from this disease. I'd NEVER heard of this before and it's DEVASTATING 💔 My sincerest prayers to ANYONE affected by this terrible condition 🙏🏾

  • @logiciansvlog5800
    @logiciansvlog5800 Год назад +42

    May this man find eternal peace. He is truly amazing for allowing himself to be filmed like this.

  • @Demonetization_Symbol
    @Demonetization_Symbol 3 года назад +113

    It's sad seeing him have to grab his arm in order to stop the tremor. But at least he was able to stop it.

  • @pufferfish1074
    @pufferfish1074 Год назад +41

    I can *feel* his frustration when he tries to do things but can’t. How is this not being talked about!? It hurts so *damn* much.

  • @RSA900
    @RSA900 3 года назад +199

    Very informative. thank you to this brave patient

  • @numrahashfaq7926
    @numrahashfaq7926 11 месяцев назад +23

    was studying this topic and this video really helped understanding the disease better but had to hold back my tears. there are times when it hits you really hard that people are so much more than their illnesses ...having a family and a complex life just like the rest of us. may his soul rest in peace

  • @sethvelazquez8143
    @sethvelazquez8143 Год назад +24

    Wow this is genuinely one of the hardest things I’ve ever had to watch man this man rest in peace, no one deserves that. Its even more heartbreaking reading the comments I’m sorry for all your losses we need a cure for these types of diseases soon. We need to better our entire society and use our resources on that before anything else.

  • @memeju1ce
    @memeju1ce 2 года назад +46

    i appreciate him allowing this to be filmed.

  • @adamshannon
    @adamshannon Год назад +24

    My mother nursed a couple of individuals with this disease back in her nursing days (late 70s/early 80s). Thankfully today we can make those who are succumbing to it a lot more comfortable.

  • @syzygy4365
    @syzygy4365 2 года назад +73

    God bless this man and his medical staff. I hope he was comfortable his last stretch of life. Praying we see a cure for this awful disease in the future.

  • @bethnolanPAC
    @bethnolanPAC 2 года назад +67

    Thank you, sir; gracias Señor. Your willingness to demonstrate the movements of this disease is helping to educate and provide others with answers across the globe. Que Dios te bendiga a ti y a tu familia.

  • @shellbacksclub
    @shellbacksclub 4 месяца назад +7

    Just found out my uncle who i love like a dad has this.

  • @ColdHawk
    @ColdHawk 3 года назад +162

    Poor guy.

  • @DomozoveoGZ
    @DomozoveoGZ 2 года назад +73

    CJD is a horrible disease, my mother passed away from it. May this man rest in peace, too

  • @reconnaissancekaren8887
    @reconnaissancekaren8887 2 года назад +35

    Imagine how awful it must feel after finding out that you’ve got a prion disease like CJD :(

  • @antoniasarria6646
    @antoniasarria6646 Год назад +30

    :( Sending love to him and his loved ones. Broke my heart to see this. I hope a cure will be found soon

  • @tinyGrim1
    @tinyGrim1 3 года назад +26

    I am sorry. Man so sweet. I hope he did or does not suffer badly by this terrible affliction. Love to people everywhere.

  • @ly1278
    @ly1278 Год назад +7

    Thank you for sharing this
    It is very helpful for medical students
    Watch the symptoms with your eyes and you'll never forget it..
    respect for the patient

  • @achie345
    @achie345 Год назад +7

    my mom experience it now, in the phase of can not response anything but the myoclonus... we do the best we can to be with her, knowing that no cure or treatment can be done with the disease... my thoughts and prays to anyone and families with this disease...

    • @Ikeyilmaz
      @Ikeyilmaz 10 месяцев назад +1

      My Dad too, he is suffering in hospital without any physical response. There is nothing to do except waiting for him to fly to the heaven.

  • @HP-fn4bo
    @HP-fn4bo Год назад +19

    My grandmother died of CJD in 1984. It really messed my mom up watching it. To the point that she had to stop visiting her because she didn’t know who she was anymore. The blood banks won’t take my blood because of her death. I’ve researched it and it’s pretty scary how little they actually know about who gets it and why.

  • @randomshittutorials
    @randomshittutorials 4 месяца назад +5

    Truly fascinating.. Hearing about it is one thing, but seeing it is something else.
    You can see body losing control after activating certain neurons and using precision.
    Thank you Sir, for being open to make footage before your death. We may be better one day because of it.

  • @sangeeta4645
    @sangeeta4645 3 года назад +58

    My mom died of CJD and I know how painful it's for the family.... As it's a fatal disease.

    • @scollinsxo2843
      @scollinsxo2843 3 года назад +15

      My condolences a very upsetting disease.

    • @sangeeta4645
      @sangeeta4645 3 года назад +4

      @@scollinsxo2843 🙏

    • @wistolla
      @wistolla 3 года назад +1

      @@sangeeta4645 which version of the cjd??

    • @sangeeta4645
      @sangeeta4645 3 года назад +5

      @@wistolla Sporadic

    • @cryonic8215
      @cryonic8215 3 года назад +3

      I’m sorry for your loss

  • @dr.chandrashekharpatel1932
    @dr.chandrashekharpatel1932 2 года назад +20

    CJD-
    *chromosome 20
    *PRPc (prion related protien)
    *PRPsc (somatic mutation)
    *Spongiform encephalopathy
    VARIENT CJD-
    *Consumption infected beef
    #MAD COW DISEASE
    #BOVIN ENCEPHALOPATHY
    *EEG -Biphasic and triphasic wave
    *CSF - 14-3-3 protien
    *MRI- cortical ribboning 🎀.
    No Treatment yet(only supportive care)

  • @Ibukisenpai
    @Ibukisenpai 2 месяца назад

    Al caballero del video decirle que es todo un ejemplo de valentía y coraje por dejarse grabar en esta situacion de vulnerabilidad. Gracias por compartir y que la cura no se haga tardar ❤

  • @pradeepbollu8649
    @pradeepbollu8649 3 года назад +23

    Poor grandpa.. Hope it will be cured completely one day

  • @kaitlynneprozan4187
    @kaitlynneprozan4187 3 года назад +17

    This illness is so sad....it progresses so fast and there's no treatment. 🥺

  • @ambre6490
    @ambre6490 2 года назад +16

    I thought that Parkinson was an horrible disease. Now, I learn about this disease and ffi, I am truly speechless, how the brain, human nature can do these things to us. So sad.

  • @lucianaromulus1408
    @lucianaromulus1408 6 месяцев назад +1

    Thank you kind Sir, for helping educate humanity on this unfair disease. My condolences to you, i hope youve found peace now ❤

  • @sabasaad6305
    @sabasaad6305 Месяц назад

    I appreciate patients efforts

  • @CandyKoRn
    @CandyKoRn Год назад +6

    Bless this poor man, I hope he is at peace now.

  • @sanyrenita
    @sanyrenita 3 месяца назад +1

    Thank you Sir. You are our teacher. Much rescpect for you ❤

  • @Cronofear
    @Cronofear 3 года назад +15

    Why does youtube put a COVID notification on this video? Is it related?

  • @Alexfilms_03
    @Alexfilms_03 11 месяцев назад +3

    Prions are absolutely horrifying. May this man rest in peace.

  • @jamiestar81
    @jamiestar81 2 года назад +7

    Very sad. You have my prayers🙏❤

  • @DaruMakaPokemon
    @DaruMakaPokemon 3 месяца назад +3

    Rest in Peace 🕊

  • @punkaakee
    @punkaakee 2 месяца назад

    All the best for this man.

  • @yuvarudra6602
    @yuvarudra6602 2 года назад +14

    Hope nobody gets this desease & may the souls of the loved ones rest in peace.
    Hope they'll find a cure for this desease.

  • @user-ob8fo8sw4i
    @user-ob8fo8sw4i Год назад +6

    I hope this man’s in a better place he looked like a great guy, what a shame we couldn’t save him

  • @fabioleal123
    @fabioleal123 Год назад +17

    mi abuela falleció por esta terrible enfermedad. Que terrible fue verla deteriorarse tan rápido que ni tiempo me dio para despedirme. Espero que se encuentre alguna cura o tratamiento efectivo que pueda curar a todas las personas que sufren de esta enfermedad.

  • @natperhaps
    @natperhaps 10 месяцев назад +7

    this is one of the diseases I’m most terrified of. rest in peace to the patient in the video- as he has most likely passed.

  • @faxm9061
    @faxm9061 9 месяцев назад +2

    Thank u sir! Rest in peace

  • @KhalerJex
    @KhalerJex 6 месяцев назад +2

    Poor man. May he rest in peace.

  • @eggvi176
    @eggvi176 Год назад +4

    this is heartbreaking.

  • @beppo1
    @beppo1 3 года назад +5

    Well this is heartbreaking.

  • @manmeetworld
    @manmeetworld 10 месяцев назад

    Great to see Google identifying credible health information like NSF and other health content like this within RUclips!!

  • @Eric-jo8uh
    @Eric-jo8uh 7 месяцев назад

    Respect for this gentleman.👍👍

  • @chiragraju821
    @chiragraju821 3 года назад +7

    Man. Rest in peace

  • @fallmar05
    @fallmar05 2 месяца назад

    My sister appears to have this. Technically no diagnosis from doctors yet until see movement specialist next month. She deteriorating by the weeks noticably. All the symptoms fit this disease. She's almost bedridden now, dementia and almost can't talk or hardly eat. Pray for her.😢

  • @ncokatana
    @ncokatana 9 месяцев назад +1

    oh my god i feel so bad for him. may he rest in peace

  • @user-pi3hd2bt3f
    @user-pi3hd2bt3f 16 дней назад

    This poor man. I cannot imagine the terror and helplessness he felt going through this and knowing things will only get worse from there. I hope he is happy in Heaven now.

  • @linggiman
    @linggiman Год назад +2

    Poor man.. I can just pray and hope than future scientist & medical advancement can someday find solution to this terminal desease.

  • @raeraebadfingers
    @raeraebadfingers 4 месяца назад +1

    I was hesitant to watch because I know it would be upsetting to watch. And that's exactly why I had to watch. I don't know how I would even handle fhe situation at all. This is real shit that happens to real people and it's heartbreaking. I wish the medical field good luck in making advanced and gaining more knowledge how to address it

  • @Internetguy_L337_90D
    @Internetguy_L337_90D 2 года назад +5

    that is really a terrible disease i wish anyone who gets it to have the best life they could possibly get until the end.

  • @elc1847
    @elc1847 Год назад +1

    poor man. i hope he comes to peace in some way.

  • @JediTiga
    @JediTiga Год назад +3

    He looks so afraid. God be with this man.

  • @shailender6767
    @shailender6767 2 года назад +4

    hello..i m from india...my aunt suffering from cjd...she is unable to see,hear m speak due to this

  • @mornobells2375
    @mornobells2375 10 месяцев назад

    Respect for him❤

  • @gretagretuteylh5067
    @gretagretuteylh5067 Год назад +2

    Is CJD fatal?

  • @gregoryfloyd3735
    @gregoryfloyd3735 2 года назад +10

    We need to figure out how to make the immune system attack prions

  • @PIXELSURPRISE
    @PIXELSURPRISE 2 месяца назад +1

    The hospital in my city put this on my medical history
    And when I saw it on the computer screen and asked what creutzfeldt jacobs was she said it was another name for the disease I had just been diagnosed with (Charcot Marie tooth)
    I made her get a medical encyclopedia and check
    She pretended to read, said it was another name for my disease, and then left me alone in the room with the book. I was very upset when I read what it was. As far as I know It’s still on my medical history
    Avoid the hospitals in Nova Scotia, they might kill you.

  • @BratisIava
    @BratisIava Год назад +4

    This hurts my heart, Prions are truly mysterious things. I wish we knew more about them since only way to kill Prions are to burn them above human limit plus they're unfortunately a guaranteed death because nothing can stop them these take years to kill and you go through last years with alot of pain, may he rest in peace.

  • @MultiSciGeek
    @MultiSciGeek Год назад +1

    How did he get this?

  • @suja605
    @suja605 Год назад +2

    That is so sad. Let him rest in peace god. how do this gets spread?

  • @PG-yi9iz
    @PG-yi9iz 3 года назад +11

    he look like he is a fighter

  • @ariadnedionysus6665
    @ariadnedionysus6665 3 года назад +11

    My grandfather died because of this.... He was a prison guard... He was the only case of creutzfeldt jakob in Canada at this Time but i dont believe it.

    • @wistolla
      @wistolla 3 года назад +1

      Was it variant?

    • @ariadnedionysus6665
      @ariadnedionysus6665 3 года назад +2

      Variant ? I only know that it was not hereditary.

  • @olivedog1880
    @olivedog1880 11 месяцев назад

    Heartbreaking

  • @louise1021
    @louise1021 Год назад +3

    :( He is so strong.

  • @ellisisland3382
    @ellisisland3382 5 месяцев назад

    I experience this form of tremor during some of my severe migraines. Scares the life out of my poor mum.

  • @didemeylulkablan1204
    @didemeylulkablan1204 Месяц назад +1

    Is it the problem in left cerebellum? Bcs his problem seem like in left extremity. I am trying to understand.

    • @theguywhoasked2957
      @theguywhoasked2957 9 дней назад

      This disease slowly takes over your brain
      So this man's left cerebellum has already been infected and he doesn't have much time to live

  • @yournearbylakotashaman6380
    @yournearbylakotashaman6380 3 года назад

    This was 5 months ago is e alivem

  • @user-qm8bc4bu1t
    @user-qm8bc4bu1t 4 месяца назад +1

    Es degeneracion de hemisfero derecho? 😢💔❤️‍🩹❤

  • @Antonio-ft6kh
    @Antonio-ft6kh 3 года назад +5

    Que dura y terrible es esta enfermedad, mi padre murió hace 6 años de esta enfermedad y es durísima, tanto para él como para la familia

    • @adrianabeltran7409
      @adrianabeltran7409 3 года назад +1

      Mi madre lo tiene ya no camina, y es angustiante pensar si una lo tiene tbn, es desgastante ver a tu apagarse dia a dia

    • @abigailabigail9459
      @abigailabigail9459 3 года назад

      @@adrianabeltran7409 cómo está tu mamá, a mi abuelita le diagnosticaron esto hace dos semanas aun hablaba y caminaba , ahora esta en cama ciega, sin mover piernas ni brazos, y no puede hablar, nos duele más verla sufrir que saber que fallecerá

  • @sonokoluvr9546
    @sonokoluvr9546 3 года назад +5

    poor guy looks so scared.

  • @Demonetization_Symbol
    @Demonetization_Symbol 3 года назад +11

    Worst thing is I heard it's painful.

    • @ShayHorseLover
      @ShayHorseLover 3 года назад +5

      Yes... my grandpa was diagnosed with CJD and he was in a lot of pain. Very heartbreaking.

    • @Demonetization_Symbol
      @Demonetization_Symbol 3 года назад +5

      @@ShayHorseLover I'm so sorry for your grandpa.

  • @Hannah.spam3
    @Hannah.spam3 10 месяцев назад

    oh my gosh.... so scary

  • @tuomas1244
    @tuomas1244 3 года назад +3

    Who is here after Canada cases?

  • @Ethixen
    @Ethixen 3 месяца назад

    R.I.P.

  • @amusinghub7548
    @amusinghub7548 3 года назад +13

    I am in 11th and when I study about jakob disease... I am confused how it look like and finally I understand what happens thanks for sharing this...

  • @memi4586
    @memi4586 6 месяцев назад +1

    That's so awful. Poor man

  • @beahgg
    @beahgg 2 года назад +1

    Is this something easily spread?

    • @cloudboysmusic5223
      @cloudboysmusic5223 2 года назад +5

      No but once you got it, it's GG. Way harder to cure than any virus, bacterial or parasitic infection. Even with the thousands of super computers we have world wide and we still have trouble simulating protien folding

  • @elle9163
    @elle9163 Год назад +1

    So sad. 🥺

  • @zagozago9893
    @zagozago9893 3 года назад +7

    Poor fellow.

  • @Burgersedits
    @Burgersedits 28 дней назад

    Rip to this man

  • @jesseansorge
    @jesseansorge 25 дней назад

    I still don’t understand how these prion diseases aren’t like cancer. Isn’t that basically what cancer is? Genetic mutations inside the body that replicate out of control?

  • @Themealman
    @Themealman 5 месяцев назад +2

    Prions aint no joke

  • @Dr.wijdan
    @Dr.wijdan Год назад +2

    I hope he rest in peace .

  • @saniyahussain5863
    @saniyahussain5863 6 месяцев назад +1

    Is anyone here after reading 'SLTCL' by A Dreamer

  • @100melo2
    @100melo2 3 года назад

    hello, as part of my studies I have to perform a speech therapy for Creutzfelt Jakob disease, could a professional help me?
    ‐--------------
    bonjour, dans le cadre de mes études je dois réaliser une évaluation logopédique/orthophonique concernant la maladie de Creutzfelt Jakob, un professionnel pourrait m'aider ?

  • @firstlast---
    @firstlast--- 5 месяцев назад +1

    Poor guy :(