Living Without Body Movement and Supported by a Caregiver (Nemaline Myopathy)

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  • Опубликовано: 24 ноя 2024

Комментарии • 153

  • @kathrinemc1664
    @kathrinemc1664 3 года назад +104

    Priscilla, thankyou for allowing us into your world. It is an honour to have met you. It also helps to dispel the myths and fears around your condition. I send you love and light from Ireland. 💞💫💞💫💞💫💞💫

  • @marleenninaka1303
    @marleenninaka1303 3 года назад +173

    Hi everyone: It's nice to see you all. I hope to meet you all one day. Nice to see you on RUclips again. Take care and stay safe.

    • @brookebixler1040
      @brookebixler1040 2 года назад +14

      I enjoyed your interview! I hope you’re doing well! I LOVE your tattoos! I have two but would like to get more!

    • @priscillawong1474
      @priscillawong1474 2 года назад +12

      @@brookebixler1040 I'm doing well! How about you? Thanks for the compliment on my tattoos!

    • @brookebixler1040
      @brookebixler1040 2 года назад +5

      @@priscillawong1474 I’m doing well besides some health stuff. Thank you for replying, I appreciate it!

    • @trml3805
      @trml3805 2 года назад +1

      I love you I’ll see you on RUclips again

    • @trml3805
      @trml3805 2 года назад +1

      Oop

  • @julianastratton1790
    @julianastratton1790 6 месяцев назад +6

    Priscilla is a superhero, and so are her mother and Rachel. Just the thought that many many many many others around the world have to struggle in similar ways, but don't have the same apparatuses or loved ones who care, profoundly breaks my heart.

  • @steveadams6595
    @steveadams6595 2 года назад +37

    Lovely to hear about you Priscilla, and you are right: ‘staying encouraged’ is really a challenge for everyone day in and day out, acknowledging and confronting the difficulties in an honest way I think cultivates great character and allows you to grow.
    Have a great week.

  • @Missy-vm8fr
    @Missy-vm8fr Год назад +19

    Girl, you are not just “smart” …you are very wise beyond your years!!! You need to write a book or do a TED talk. Beautiful inside as well as out!!!

  • @freedomofspeech766
    @freedomofspeech766 3 года назад +9

    Dear Priscilla ... you are a lovely person inside and out. The eyes are the mirror of the soul and your eyes are all soul. I pray with each day you feel better and lots of love to you and your very loving mother and little doggy ... I wish I could hug you and visit you in real life but unfortunately I live on the opposite side of the planet. Hugs and kisses to you xxx

  • @Hedwig-gj2di
    @Hedwig-gj2di 3 года назад +36

    You are very wise and definitely someone I think I would like to have a conversation with. Thank you for telling us a little about you and your life. I hope you are doing well and content and I wish you many blessings and joy.

    • @Syrupsssss
      @Syrupsssss 2 месяца назад +1

      Many conversations and on going friendship would be nice too.

  • @noname-pz7qr
    @noname-pz7qr 3 года назад +10

    You know what makes her especial? No, it's not her disability.but it is all the efford that she and her family makes to live a good life❤

  • @brunahamabata1
    @brunahamabata1 3 года назад +15

    Lots of love to both of you, Priscilla and mum.

  • @Tranquility32
    @Tranquility32 2 года назад +9

    It’s easy to see she’s a wonderful person and friend. Much love to her and her dear mom and family. ♥️

  • @sherryd.3425
    @sherryd.3425 3 года назад +29

    Hi, Priscilla. I hope you're still doing well after all this time. I wish that I could have commented right after I viewed your interview because you were so candid and personable. Is your dog a miniture poodle? My first pet was just by chance. He was smart and loyal and just such a rare, unexpected gift. He saved my life from age 15 to 28 years. I was in emotional turmoil, bullied, tormented, and just stretched to the max trying to put on a happy face for my siblings.
    Bottom line: We are here in all our "glory" to initiate change in society. We humans are all very much the same, but often only notice and accentuate our tiny, tiny differences. I am many years older than you are, and yet, you have independently discovered and articulated that same message in your own original, empowered way. Why are we not uniting ourselves with one strong voice?

  • @nikkoleadams4677
    @nikkoleadams4677 3 года назад +26

    This woman is an intellect and an icon. I’d love to meet her.

    • @ericcartman9042
      @ericcartman9042 2 года назад

      No!!!!

    • @nikkoleadams4677
      @nikkoleadams4677 2 года назад +3

      @@ericcartman9042 I'd still like to.

    • @ericcartman9042
      @ericcartman9042 2 года назад +1

      She's my girlfriend and nobody sees her without getting permission from me first

    • @nikkoleadams4677
      @nikkoleadams4677 2 года назад +2

      @@ericcartman9042 In that case, may I have your permission? lol

    • @priscillawong1474
      @priscillawong1474 2 года назад +12

      @@ericcartman9042 Who are you?? I'm very sure that I never accepted you as my "boyfriend" ever, as I don't even know you. Please stop posting outlandish statements that aren't true.

  • @Totalchaos0228
    @Totalchaos0228 3 года назад +19

    Priscilla, your appearance is not intimidating. I was happy to be able to see your lovely face.

  • @shellyannlewis2595
    @shellyannlewis2595 2 года назад +9

    Rachel you're a blessing, God 🙏 bless you for doing such a wonderful job.

  • @ceciliafernandez2468
    @ceciliafernandez2468 3 года назад +7

    Thank you, Priscilla- BRILLIANT!!! Your mom had the perfect word ♥️

  • @meme-ug8oh
    @meme-ug8oh 3 года назад +11

    I wanted to thank you for your video. I learned a lot from you. I think you are super special and I wish I could give you a big hug.

  • @savannahbosworth2900
    @savannahbosworth2900 2 года назад +11

    Beautiful video! Nice to meet you Priscilla ❤️
    My son also has Nemaline myopathy ❤️

  • @stanleygarlick3034
    @stanleygarlick3034 2 года назад +4

    You are brave and beautiful. Thank you for helping us understand that you are smart and a wonderful human being! 💕

  • @brendaberkelback2660
    @brendaberkelback2660 3 года назад +10

    GOD BLESS YOU ALL AND EVERYTHING YOU GUYS DO TO HELP.❤😇🙏🏻

  • @bible_verses_to_add8337
    @bible_verses_to_add8337 2 года назад +3

    God bless you sister. Truly you are more than everything you are going through. YOU ARE PRECIOUS TO GOD.

  • @lorricivalier4604
    @lorricivalier4604 3 года назад +17

    You are truly amazing❣️I can see the love from your mother for you ❣️

    • @priscillawong1474
      @priscillawong1474 2 года назад +1

      Thank you!!

    • @m.carmendiaz913
      @m.carmendiaz913 2 года назад +2

      I’m spanish. I loved to hear about you and I liked your tattoo a lot.
      You said you love reading. Could you recommend me a book? I love reading too.

  • @DAVEJJR
    @DAVEJJR 2 года назад +5

    You are a beautiful young woman! An inspiration to us all!

  • @gieljanstouten
    @gieljanstouten 3 года назад +11

    U are a great person, thanks for making this video alot of good wishes from The Netherlands.

  • @toomuchtotype6079
    @toomuchtotype6079 3 года назад +8

    Sending lots of love and positive vibes friend. Hope you are happy and doing well. Take it all a day at a time. 💚💚💚Also hope your fur baby is doing well as well.

  • @angiesands2175
    @angiesands2175 2 года назад +5

    You are an absolute warrior. ❤️💯❤️💯❤️💯

  • @jochhejaam
    @jochhejaam 2 года назад +3

    And thank God for these awesome caregivers!

  • @jetsparks17
    @jetsparks17 3 года назад +6

    Thank you bro for doing this and showing the world that different is normal. thank you

  • @ShaniaNicole
    @ShaniaNicole 3 года назад +11

    I enjoyed watching this! Great to meet you Priscilla!!

  • @chrisatkins7959
    @chrisatkins7959 8 месяцев назад

    Hello Priscilla 😀 I hope you are doing well!! You are very bright and have a great grasp on humanity. It’s awesome that you are achieving your educational goals. I wish you the very best and GOD bless!! 😇🙏

  • @bellejourneelibre47
    @bellejourneelibre47 2 года назад +1

    She's amazing and have she is beautiful inside and out. I wish her all the happiness 💕 💕 💕 💕 💕 💕

  • @RinokuMotahi
    @RinokuMotahi 3 года назад +24

    I recently finished my first bachelors and I got so happy when you talked about your degrees! Women and gender studies have a sound amazing.

  • @tracychen4122
    @tracychen4122 5 месяцев назад +2

    Omg I have something very similar to this. It’s called Nemaline Rod Myopathy which makes all my muscles weak throughout my body and I also have a trach and ventilator. Seeing this video is so inspiring 😊

    • @m3kbeatz
      @m3kbeatz 4 месяца назад +1

      I am disabled. How do u manage of anxiety and fear of getting old and maybe being alone.

    • @tracychen4122
      @tracychen4122 4 месяца назад +1

      @@m3kbeatz I just don’t think about it and you’re never gonna be alone. I bet you have a bunch of people who love you and as long you have them, you’re gonna be fine and enjoy life. That’s the most important part

  • @rhiannonm8132
    @rhiannonm8132 Год назад +2

    priscilla, i also have depression and struggle with suicidal ideation. people like us are always fighting just to stay, and you have some additional/different challenges than some people do. but it makes me feel better to think we are all fighting together. it’s easy to feel guilty about having depression or to feel like a burden, but you’re worth so much, and everyone deserves to honor all of our feelings and the struggles we face. i absolutely love your tattoo and the beautiful frida kahlo quote - it’s perfect! i’m glad to hear you like to paint like her, that’s really cool. i also love art. hope you can find peace and (sorry to say it!) can stay encouraged! i’ll try my best too, and i’ll keep you in my thoughts!
    ps. another frida quote: “Al final del día, podemos soportar mas de lo que creemos que podemos.”

  • @sheenagriffith2635
    @sheenagriffith2635 Год назад +1

    Its sad that in this world, there are people who would bully soneone so much going on already.I wish for you good health and long life, and lots of love and happiness. Just keep being the sweet you that you are.❤❤❤

  • @monaminchau4798
    @monaminchau4798 Год назад +3

    Amazing to see how the wheelchair can be operated with such minimal movement! I hope technology will grow fast to provide yet more independence!

  • @AngelicaCline-i6d
    @AngelicaCline-i6d 7 месяцев назад +1

    I appreciate my bady functionality I do have because it could be this. Man talk about strength.

  • @larrylim3571
    @larrylim3571 3 года назад +3

    I'm inspired a lot and thankful for God's grace in sustaining all who are physically and mentally affected. I see God more in your presence.

  • @spanishtranslator1668
    @spanishtranslator1668 3 года назад +11

    Courageous! 💕

  • @jochhejaam
    @jochhejaam 2 года назад

    God Bless this beautiful lady! We love you!

  • @melanietoth1376
    @melanietoth1376 3 года назад +12

    She is definitely brilliant. I'd love to talk about her studies, I've taught in women and gender studies.

    • @melanietoth1376
      @melanietoth1376 3 года назад +4

      I hope she continues in her work because she would be a great professor. Not many people are so mindful and concious. ♡

  • @kristinamastroianni1930
    @kristinamastroianni1930 3 года назад +7

    Peanut butter & Jelly! I 💜 that!
    Great tattoo!

  • @TheEmj1986
    @TheEmj1986 Год назад

    Such a wonderful & smart woman, God bless! ❤❤❤

  • @dreamwalker3698
    @dreamwalker3698 2 года назад +1

    You are such a doll❤️ Love the tattoo! Thanks for sharing your life with us😊

  • @kristinialyons5230
    @kristinialyons5230 2 года назад +6

    I have bipolar so I know with me it helps to be pushed. I have kids, which I never wanted to have, but because of them I HAVE to get up. I have to perform. I HAVE to, especially since I have little family help. Having a job part time helps. You HAVE to go, especially if you're poor!! If people come over regularly you will HAVE to most likely rise to the occasion and be social. Routine that PUSHES you really helps, and always get the proper emotional breaks in that you need as well!!

    • @kellymichelley
      @kellymichelley Год назад +1

      I know exactly what you mean and agree with you 100%. I'm also diagnosed as bipolar, by the way. Not sure I concur with the diagnosis, but the meds help, so they can label it whatever they want.

  • @cherylolsen7811
    @cherylolsen7811 Год назад +1

    Thank you for sharing your story with us ❤ It is very interesting to see the ways different people succeed in life with different challenges. I am disabled too.

  • @ronanevans3661
    @ronanevans3661 Год назад +1

    I love you beautiful person inside and out I live you all guys 🙏🙏🙏🙏❤️❤️❤️❤️💯💯💯💯

  • @noname-pz7qr
    @noname-pz7qr 3 года назад +2

    She is so kind❤

  • @tyrellwilliams2914
    @tyrellwilliams2914 2 года назад +1

    Bless you and in Prayers daily 🙏 and Love and Care and Concern always ❤️❤️❤️❤️ ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️ Wishing Well and Health and Prosperity ❤️❤️❤️❤️❤️❤️❤️❤️❤️ Mother and daughter are Super Strong and Blessed. Blessed you all❤️❤️❤️❤️❤️❤️❤️

  • @cynthiasuri9191
    @cynthiasuri9191 2 года назад +7

    They said that the vent has to be turned off, so Priscilla is not breathing while her caregiver transfers her from the chair to the bed, so they have to be fast.
    How could she stay alive without breathing for long minutes? I can't hold my breath even for 20 seconds.

    • @Pit_Lord
      @Pit_Lord 2 года назад +2

      She can breathe, just not enough to stay alive for long durations. Or, in other words, she isn’t able to take in enough oxygen to satisfy her bodies requirements on her own, so assistance is needed to keep her O2 levels stable.

  • @punkyduck28
    @punkyduck28 3 года назад +5

    Beautiful ❤️

  • @NorthwestCatch
    @NorthwestCatch 2 года назад +1

    You are amazing. Thank you for letting us in

  • @enrisaher
    @enrisaher 3 года назад +9

    Hola, soy de México y me gusta mucho tu trabajo porque me hace reflexionar sobre lo que tengo. El tatuaje en español es de la artista Frida Kalo, que también sufrió de muchas penurias en su cuerpo. Hay que ver sus obras de arte para darse cuenta de sus aflicciones. Saludos

    • @emco5243
      @emco5243 3 года назад +5

      Yes, for English speakers , her Spanish tattoo is a quote from Freida Kahlo! A little known fact, like Priscilla, Freida Kahlo was an artist who was also a member of the disabled community !

    • @welcomwelcom9882
      @welcomwelcom9882 Год назад

      😮

  • @vanessakrugman2781
    @vanessakrugman2781 3 года назад +8

    People accept physical disabilities with no problem if the person is intelligent..We have so far to go still..Society still does not accept people like my son with a severe mental impairment...He is severe autism and because he is not considered intelligent he is the most discriminated disability ..He is human still and has feelings ..He just cant verbalize it ..We have a very long way to go still

  • @unknownytaus
    @unknownytaus Год назад +2

    She would be so happy with how much everything has changed but how is she now days

  • @qammararshad6891
    @qammararshad6891 3 года назад +9

    God bless you. Amen

  • @mikecampos5123
    @mikecampos5123 5 месяцев назад

    Priscilla you're amazing I love this video ❤️❤️❤️❤️❤️❤️🙏🙏🙏🙏🙏🙏

  • @chronically_bqueenb
    @chronically_bqueenb 2 года назад +2

    I have a physical disability myself and wheelchair ♿️ bound

  • @kathrynoneill5862
    @kathrynoneill5862 3 года назад +4

    You are so awesome.

  • @pmfmpls
    @pmfmpls Год назад +5

    The oxygen looks uncomfortable. I hope it's not.

  • @BullShark-i2z
    @BullShark-i2z Год назад +1

    Her caregiver seems to be a good caregiver. She seems to get the point of being a caregiver. Not all caregiver actually care.

  • @thomasnadeau2583
    @thomasnadeau2583 3 года назад +6

    She's my best friend 💓.

  • @mandybear7063
    @mandybear7063 3 года назад +5

    I love her tattoos. She has so many pretty tattoos!

  • @shelleysmith6342
    @shelleysmith6342 7 месяцев назад

    Whom ever bullied you has no sense of being a human being it’s a shame there are ignorant people who haven’t been educated by their parent about differences in people whether it color ethnicity or differently able people

  • @stacyberlfein4724
    @stacyberlfein4724 2 года назад +1

    I love your life philosophy and totally agree. People need to be more open, accepting, and loving of others and people who are different from them. Thanks for speaking out about that because just like negativity can be contagious, caring can be as well.

  • @menrbuiltnotborn6241
    @menrbuiltnotborn6241 2 года назад +1

    Very charming girl and other then Her disability , very normal to me 😊

  • @notmarkeza7937
    @notmarkeza7937 Год назад +2

    Support!

  • @lindawagar-zl8ik
    @lindawagar-zl8ik Год назад

    I question the kindness of the caretaker. She seems unhappy.

  • @FullTimePatient37
    @FullTimePatient37 Год назад +1

    Thanks for sharing 💛💛💛

  • @Mr_Gray_1995
    @Mr_Gray_1995 3 года назад +5

    God. Bless. You.

  • @kantnergirl08
    @kantnergirl08 Год назад

    She is brilliant

  • @jameslind2764
    @jameslind2764 Год назад +2

    Can we get an update on Priscilla?

  • @johnjobin7694
    @johnjobin7694 Год назад

    Sending love❤️

  • @danyabraun9472
    @danyabraun9472 2 года назад +3

    I know this is a bit of an old video, but Priscilla your tattoos are sick! I love the colour choices

  • @Bimboslayer
    @Bimboslayer 3 месяца назад

    Can we see her art sometime? I’d love to see what a painted by tongue picture looks like.

  • @edolson9661
    @edolson9661 Год назад +1

    You're gorgeous!

  • @toniabrown4376
    @toniabrown4376 Год назад

    Can you wear an oxygen tube that goes like a scuba diver wears

  • @kantnergirl08
    @kantnergirl08 Год назад +1

    How is Priscilla in 2023?

    • @Galvatar100
      @Galvatar100 11 месяцев назад +3

      Not really an answer, but she hasn't posted on her blog for a while but she did post a picture of her dog on facebook a few months ago.

  • @meganchristian7085
    @meganchristian7085 3 года назад +1

    Interesting how peoples live their lives

  • @frasersgirl4383
    @frasersgirl4383 3 года назад +6

    I love your tattoos!!

    • @priscillawong1474
      @priscillawong1474 2 года назад +1

      Thanks!

    • @frasersgirl4383
      @frasersgirl4383 2 года назад

      @@priscillawong1474 I love your pup too! I have four dogs of my own! What is his name? I didn’t catch it……

    • @priscillawong1474
      @priscillawong1474 2 года назад +1

      @@frasersgirl4383 His name is Babee!

    • @frasersgirl4383
      @frasersgirl4383 2 года назад

      @@priscillawong1474 my little ones name is Bear!

  • @turionb1408
    @turionb1408 2 года назад

    wish you all the best

  • @itsmeagain9253
    @itsmeagain9253 3 года назад +4

    💖🌺💖🌺💖🌺💖

  • @aronlelenora9572
    @aronlelenora9572 2 года назад +2

    ❤❤❤❤

  • @lauanagirard5195
    @lauanagirard5195 2 года назад +1

    I can't imagine not being able to do anything at all the boredom would be insane. I hope she can get over this low point and keep her eye on God. Does anyone know what happened to her?

    • @priscillawong1474
      @priscillawong1474 2 года назад +12

      Hi. I'm very much still here and am doing pretty well. I also want to clarify for you that even though I can't physically move my body independently, there are still many things that I can do to make sure I'm not just a 'bored' statue helplessly waiting for minutes to pass by, i.e. I can read, watch series or films, play games, further my education, visit various places through travel, go to events and whatnot in the community, and much more. I hope that this corrects your impression that I can't 'do anything' and that I am bored. Take care.

    • @FullTimePatient37
      @FullTimePatient37 Год назад +1

      @@priscillawong1474 your confidence is striking Priscilla 💕
      I'm still trying to accept my disabilities, it's been a very rapid decline from being healthy to disabled... I'm not yet in that position of being able to (enjoy) anything life is offering 😔

  • @leovanrossen6331
    @leovanrossen6331 Год назад +1

    💕

  • @Toni-nx1sw
    @Toni-nx1sw 3 месяца назад

    Beautiful lady

  • @imveryboredeee6588
    @imveryboredeee6588 3 года назад +3

    👍

  • @traciemarsh1611
    @traciemarsh1611 8 месяцев назад

    beautiful lady

  • @akinolaopeyemiodunayo9871
    @akinolaopeyemiodunayo9871 9 месяцев назад

    Does every life worthh living?

  • @itsmelive
    @itsmelive 3 года назад +2

    First question: what were the 2 minors?

  • @Syrupsssss
    @Syrupsssss 10 месяцев назад

    ❤❤❤❤❤❤❤❤❤

  • @arsalanabolfathi552
    @arsalanabolfathi552 2 года назад +1

    ❤❤❤❤❤❤❤❤❤❤👏👏👏❤❤

  • @juriaanoussoren
    @juriaanoussoren 2 года назад

    She don't need air?for minutes

  • @benmoore4529
    @benmoore4529 3 года назад +3

    ♥️🌹🌹♥️

  • @albertoponcemusic
    @albertoponcemusic 11 месяцев назад

    Priscilla is awesome 😎 pies para que los quiero si puedo volar

  • @meganchristian7085
    @meganchristian7085 Год назад +1

    I want to be his next Interviewee

  • @jamiepowers3978
    @jamiepowers3978 2 года назад

    that’s a cool tattoo,

  • @adamisaac4685
    @adamisaac4685 2 года назад +1

    Hi beautiful

  • @alfredcodl5400
    @alfredcodl5400 Год назад +1

    I think she is very wise, but she's never seen people without their mask off. Your tune changes when that happens.

    • @priscillawong1474
      @priscillawong1474 Год назад

      Can you explain what you mean? Seeing people without their masks on?? I don't get what you're insinuating...

    • @kellymichelley
      @kellymichelley Год назад +1

      @@priscillawong1474 I'm guessing he assumes that you can't "go out and socialize", and therfore haven't been around the average person enough to see beyond the image they portray to others. He might be bitter about people because the type he gravitates to or has ended up with in his life tend to put so much effort into portraying a certain image that they don't end up developing any kind of true character, or understanding and acceptance and love of others, and are therefore shallow and self-centered. Maybe he's tired of being deceived, and he's come to the conclusion that all people are like that.
      Alfred, that isn't true! You just haven't met the right people. Maybe you gravitate towards a certain image, and it turns out that, yes, that type of image is just a facade. Try to avoid that image and get to know people you wouldn't naturally be drawn to.
      I have the feeling that Priscilla doesn't gravitate to shallow, self-centered people, and that the people in her life truly love and care about her.
      Sorry Priscilla; at this point, I'm apparently a little mixed up about whether this message is directed at you or Alfred...

  • @shelleysmith6342
    @shelleysmith6342 7 месяцев назад

    I would not be intimidated I would come right up to you and say hey what’s up and whatever way you could communicate it would be fine hello friend and I love your tats