Living Without Body Movement and Supported by a Caregiver (Nemaline Myopathy)
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- Опубликовано: 26 июн 2024
- Priscilla is diagnosed with nemaline myopathy and is supported by a caregiver. She wants others to know that behind the ventilator and wheelchair is a person just like you.
Connect with Priscilla:
Her blog: priscillajanae927.wixsite.com...
Facebook: / proudmisfitcil
SBSK's Socials:
/ specialbooksbyspecialkids
/ chrisulmer
/ specialbooksbyspecialkids
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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. 💞💫💞💫💞💫💞💫
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.
I enjoyed your interview! I hope you’re doing well! I LOVE your tattoos! I have two but would like to get more!
@@brookebixler1040 I'm doing well! How about you? Thanks for the compliment on my tattoos!
@@priscillawong1474 I’m doing well besides some health stuff. Thank you for replying, I appreciate it!
I love you I’ll see you on RUclips again
Oop
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.
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.
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.
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!!!
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
Lots of love to both of you, Priscilla and mum.
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❤
It’s easy to see she’s a wonderful person and friend. Much love to her and her dear mom and family. ♥️
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?
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.
Rachel you're a blessing, God 🙏 bless you for doing such a wonderful job.
This woman is an intellect and an icon. I’d love to meet her.
No!!!!
@@ericcartman9042 I'd still like to.
She's my girlfriend and nobody sees her without getting permission from me first
@@ericcartman9042 In that case, may I have your permission? lol
@@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.
Beautiful video! Nice to meet you Priscilla ❤️
My son also has Nemaline myopathy ❤️
Thank you, Priscilla- BRILLIANT!!! Your mom had the perfect word ♥️
You are brave and beautiful. Thank you for helping us understand that you are smart and a wonderful human being! 💕
U are a great person, thanks for making this video alot of good wishes from The Netherlands.
GOD BLESS YOU ALL AND EVERYTHING YOU GUYS DO TO HELP.❤😇🙏🏻
Priscilla, your appearance is not intimidating. I was happy to be able to see your lovely face.
You are a beautiful young woman! An inspiration to us all!
You are truly amazing❣️I can see the love from your mother for you ❣️
Thank you!!
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.
You are an absolute warrior. ❤️💯❤️💯❤️💯
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.
Thank you bro for doing this and showing the world that different is normal. thank you
And thank God for these awesome caregivers!
I love her tattoos. She has so many pretty tattoos!
Courageous! 💕
God bless you sister. Truly you are more than everything you are going through. YOU ARE PRECIOUS TO GOD.
I enjoyed watching this! Great to meet you Priscilla!!
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!!
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.
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!! 😇🙏
Peanut butter & Jelly! I 💜 that!
Great tattoo!
God Bless this beautiful lady! We love you!
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.”
She's amazing and have she is beautiful inside and out. I wish her all the happiness 💕 💕 💕 💕 💕 💕
You are amazing. Thank you for letting us in
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.
Beautiful ❤️
You are such a doll❤️ Love the tattoo! Thanks for sharing your life with us😊
She is so kind❤
Such a wonderful & smart woman, God bless! ❤❤❤
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.
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 😊
Amazing to see how the wheelchair can be operated with such minimal movement! I hope technology will grow fast to provide yet more independence!
God bless you. Amen
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.
You are so awesome.
She is definitely brilliant. I'd love to talk about her studies, I've taught in women and gender studies.
I hope she continues in her work because she would be a great professor. Not many people are so mindful and concious. ♡
Priscilla you're amazing I love this video ❤️❤️❤️❤️❤️❤️🙏🙏🙏🙏🙏🙏
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.❤❤❤
I love you beautiful person inside and out I live you all guys 🙏🙏🙏🙏❤️❤️❤️❤️💯💯💯💯
Support!
I know this is a bit of an old video, but Priscilla your tattoos are sick! I love the colour choices
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❤️❤️❤️❤️❤️❤️❤️
Thanks for sharing 💛💛💛
She is brilliant
God. Bless. You.
Sending love❤️
She's my best friend 💓.
wish you all the best
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
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 !
😮
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.
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.
Very charming girl and other then Her disability , very normal to me 😊
She would be so happy with how much everything has changed but how is she now days
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.
I have a physical disability myself and wheelchair ♿️ bound
I appreciate my bady functionality I do have because it could be this. Man talk about strength.
You're gorgeous!
💖🌺💖🌺💖🌺💖
beautiful lady
❤❤❤❤
The oxygen looks uncomfortable. I hope it's not.
Interesting how peoples live their lives
💕
I love your tattoos!!
Thanks!
@@priscillawong1474 I love your pup too! I have four dogs of my own! What is his name? I didn’t catch it……
@@frasersgirl4383 His name is Babee!
@@priscillawong1474 my little ones name is Bear!
Can you wear an oxygen tube that goes like a scuba diver wears
Her caregiver seems to be a good caregiver. She seems to get the point of being a caregiver. Not all caregiver actually care.
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
Can we get an update on Priscilla?
👍
❤❤❤❤❤❤❤❤❤
I want to be his next Interviewee
Does every life worthh living?
❤❤❤❤❤❤❤❤❤❤👏👏👏❤❤
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?
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.
@@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 😔
that’s a cool tattoo,
I question the kindness of the caretaker. She seems unhappy.
First question: what were the 2 minors?
She don't need air?for minutes
How is Priscilla in 2023?
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.
Priscilla is awesome 😎 pies para que los quiero si puedo volar
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
♥️🌹🌹♥️
Hi beautiful
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
Vvvvvvvv
I think she is very wise, but she's never seen people without their mask off. Your tune changes when that happens.
Can you explain what you mean? Seeing people without their masks on?? I don't get what you're insinuating...
@@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...
отличное шоу уродов,спс за подборку ютаб.