Young Love with a Progressive Disease (Stiff Person Syndrome)
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- Опубліковано 22 тра 2024
- Rose is diagnosed with Stiff Person syndrome, a progressive disorder that is making her muscles more spastic and attacking many part of her body. Her boyfriend, Blayze, is just happy she doesn't have to experience it alone and vows to be there every step of the way. Rose wants others to know that it is possible to still live a fulfilling life with a progressive neurological disorder.
Support SBSK at / sbsk
Rose's socials:
/ rosethrives
/ thefairygrandmother
Blayze is a role model of how a loving, honorable, caring, respectful man should aspire to be.
100%
He is an Alpha Chad.
So zero friends/family? Constantly supporting his woman, always by her side? Seems excessive.
@@trouper206 no way you just watched a 16 minute video and assumed the guy had no life... Him being her caregiver is the bare minimum for someone that loves her. And as someone coming from a country where it's traditional to care for the elder and the ill or disabled, that does not mean people don't have a life. Loving someone is taking care of them, you don't stop being your own person just because you love someone, why would you for taking care of them?
@@martaribeiro96 He has no friends and no family. Therefore no social life. Does that sound like what a "man should aspire to be"?
as someone who has attempted suicide and still struggles with suicidal thoughts, rose's story about her realization that she wanted to live made me cry. thank you so much rose, your story gives me hope.
I'm so happy to hear that. I still have thoughts sometimes but they are so much easier to get past. I hope you keep fighting. I'm proud of you
Sending love and positive energy toy you ... ❤
@@rosethrivesRose dear sweet soul, im so happy for you both that you found each other. Have you ever thought about writing a book? You are so intelligent and well spoken, the world could use some of your kind words. Take care.
I truly hope things get better for you!
😭💕💖🥹
I hope Rose reads this comment... Anyways, my mom has SPS since 2005, she is still alive. I was her main carer for great part of my youth and I sort of understand what Rose is explaining here. I know this syndrome manifests differently in every person, but I can say that after many years of trying different medications, my mum was prescribed mycophenolate and this is working really well, this basically prevents your immune system from attacking yourself keeping GAD antibody levels controlled. She regained A LOT of autonomy and the spams disappeared. Her quality of life improved a lot, since then, and she can safely walk and do things.
I never comment on UA-cam, but I thought this message might help some people with SPS and also shed some hope.
I will look this! Thank you!
Great news and info! I so hope they are this! 👍
This is fantastic news! 💕
omg amazing for you to share this. ❤ loving couple
There have been significant steps forward in medical research recently. Human gene mapping and innovations such as CRISPR are offering new routes for therapy, and it seems almost every other week that some life changing drug or therapy is developed. Even for progressive conditions such as Alzheimer’s and MS.
Seriously, it’s a really exciting time to be alive!
You never know what might be possible in the future, so if anyone has a condition, I would recommend you keep an ear out for clinical trials that might help you and keep well informed about newer options.
Dude talks about all the blessings in his life, when he is really the blessing all along.
Completely agree. He's so sweet
Well put
Honestly that's how it feels to be in a loving relationship sometimes, "how could I ever repay you for everything you've done for me?♡" "How could I ever repay YOU for what you've done for ME?☆"
@@cozymoggele Your best relationships will involve give and take that places more value on the intent than on the content. It's never about how much someone can do for you, but how much they wish to be the place all your joy comes from. I feel like they are both constantly wishful, and so a love can't help but flourish.
You are turning on the waterworks 💧 over here
Protect this man at all costs, the way he treats her is incredible
For the camera
He’s a drip!
@@terrytownsend5583Nah he's a trip! It must hurt to be that hip
@@terrytownsend5583what do you mean? How do you know he’s being insincere for the camera?
What a beautiful story, spoken in the words of a beautiful spirit.
A beautiful couple. Rare souls.
This comment couldn't have been said any better!
Amen. Agree completely ❤
Rare souls is such a beautiful idea and describes this couple perfectly.
I sure wish there were more people like Rose and Blayze in the world.
Me too ❤
Amen!
There is 🧡🤷🏻♀️🧡🧡
Dittos to that! They are absolutely two beautiful souls. They are what give me hope for humanity. God bless this beautiful couple.
I noticed the breathing pattern is normal in meditation circles
What a sweet couple! I hope the best for her! And him as boyfriend and caregiver!
@@chrisunruh9944 dude what are you talking about this has nothing to do with physical appearances 😭
@@chrisunruh9944 Are you serious? That’s not true
@@chrisunruh9944This mindset is toxic, dangerous and sexist. Please seek help from a mental health professional and don't date anyone.
@@Aster_Risk I’m sorry was just having a moment don’t feel like that anymore
Blayze and Rose are so wholesome together! 😊
This was really sweet. They both seem to genuinely love each other very deeply. I hope that Blayze will try to find an external support system, only because it sounds like he doesn't have friends or family AND isn't currently working, so he's not interacting with anyone else. If Rose's condition does progress, as it sounds like it eventually will, he is going to need some form of external support. I speak as someone who has a limited support network myself and recently supported my wife through cancer (thankfully she is in remission). Having someone to spill outwardly to is really important because you can't bottle it all up forever. It sounds like they are both doing fine for right now, but I'm just thinking of the future. I wish them both all the best.
Blayze is looking into therapy and making friends as he goes to school and soon will be starting working again. I was worried about this too
I'm on the autism spectrum, and they both seem to me to also be on the spectrum. This means that it may not be so difficult to have less close friends than a neurotypical may need or desire.
@@rosethrives That's awesome. While it's not the same, I saw my wife through cancer last year and therapy was so helpful for me, so I hope he'll benefit from talking to someone too. I'm also glad it sounds like you have family and friends as well. You guys are amazing together and I'm rooting for you. Thanks for sharing your story!
@@trollsneedhugs Oh, I understand, as someone with autism myself I have literally zero close friends and only one close family member outside of my wife, and it works for me. That said, having a therapist last year while my wife went through cancer was really helpful. Even asocial people like myself need an outlet sometimes.
He IS working, he's her caregiver which he gets paid for
The way she speaks is so precise, i loved how she described the caregiving an act of intimacy between her and her bf
I really enjoy her speech patterns and tones
I’d love to hear Blayze’s whole story. Something has made him an incredibly humble man. ❤
Wow, what an amazing boyfriend! Not many men would be so devoted. She is lovely and I wish them both all the best for their future together.
Not many women either.
Hey, I have SPS! After years of following SBFSK and enjoying the interviews, I have to say it was cool to see an interview about SPS specifically! ❤ Glad to learn Rose and Blaze’s perspectives. Two very cool people.
Dude that's awesome! Not that you have SPS, but that my video reached someone with it. It can feel very isolating. Are you classical?
No F
Sbsk
Agree wholeheartedly. Truly an inspiration ❤
I dated a man who had lost his grandparents that were raising him when he was still in high school. He quit school to support himself. No social programs back then. His grandparents had been farmers but were elderly when raising him and could not farm much anymore. Someone mentioned him growing up poor. He got a confused look on his face and said we werent poor. We always had heat and always had food. He wouod go check on neighbors he thought might be lonely or sick. He lived tye way people did generations ago. I became a much more considerate and patient person from being around him. I sometimes wish I had married him but I was young and impulsive then. He is passed on now but I know hes with God.
Aw man that is rough, that reminds me of a boyfriend I used to have, thank you for sharing 😢💞
I had to be 35 years on this earth before I matured enough to appreciate a man like you described. I managed to marry mine, but, I kissed a lot of frogs...slugs even...before I finally grew up. Thank you for sharing. I just went and gave my hubby a kiss!
I wake up and think about how I have refrigerator, furnace, clean clothes, fairly good health, wonderful kids, a magnetic partner... I'm so blessed, when times are hard, life can be great!
Blaze seems like a really down to earth and chill guy, it seems like they're both very lucky to have each other. He seems quite calming, I'd hope that that would help Rose at times. She also seems like such a sweet person and so upbeat for the pain she must go through. I'm glad she did survive that choice because she is here today and can help other people with the same syndrome as well as help other people without it to understand what it entails. Thank you Rose and Blaze for letting us have an insight into your beautiful lives. I hope you always get to remain so optimistic and I'm SO happy that your choice wasn't your time to go. I have a strong feeling you are here for so much more than you could ever know :) x
Blayze is such a mature lovely man. Doesn't think of himself first. God bless them both. 🙂
There’s grief in disability like “never getting better” that I deal with everyday. I try to focus on what brings me joy like what Rose talked about. Thank you for sharing. ❤ Life is limitless and we don’t know what’s ahead. Love to you!
What an awesome, lovely, and insightful couple. When Blayze said he doesn't have friends and family, that completely broke my heart. They both seem like such wonderful people.
Rose’s experience is so reminiscent of all the studies that have been conducted regarding Near Death Experiences (NDEs). Anyone interested should read “After” by Dr. Greyson, a neuroscientist who dedicated their life to studying NDEs. It will make you see the afterlife in a whole new way.
interesting... in what new way?
Thanks....I've heard of Dr. Greyson; but, haven't had a chance to get the book yet.
If it's supernatural bs, no thank you. People don't need to be lied to.
Jesus is the Way, the Truth , and the Life 🎊🎉🥰🥳✝️
What a beautiful couple! The way they look at each other shows it's true love.
What a beautiful and inspiring person Rose is. And Blayze is an amazing human being as well.
Rose's voice is like a sunlit field of flowers :-)
You two win as coolest loving couple ever. It saddened me that Rose was LITERALLY pushed around and didn't feel autonomy. As someone who can walk, I cannot imagine how frustrating that would be and I will keep it in my head the next time I am helping someone who is in a wheelchair. Also, shoutout to someone who knows and loves WEEN. Saw them live years ago (it would show my age if I said when.). Wishing the best for both of you.
What an impactful reminder Blayze shared with us about counting our blessings. To have even your basic needs met (food, clothing, shelter, clean water and safety/love) are things that many many people in the world don’t have.
So glad Rose has Blayze he seems like the perfect partner to handle those tough moments with. I can't believe Rose goes to the hospital every week!?! Rose you seem like a kind, strong, and fun person! You are an inspiration!
It can be rough. Luckily both the hospital and paramedics are trained on how to handle my spasms so it isn't too bad. This December one of my paramedic friends is doing a class on stiff person syndrome to teach everyone signs to look out for and exactly how to treat us. I'm forever grateful.
The counting your blessings part is so under rated🥺 made me feel horrible, feeling inconvenienced and upset when I have so much to be happy and thankful for.
They both speak with such a frankness and honesty about the situation. Rose about accepting the diagnosis in 2021 and Blayze about how different it is to experience a condition with someone you love versus seeing it on TV. Such a lovely and caring couple.
“fear of the unknown” - Yes! Ain’t that the truth! And that’s why this channel is so valuable, because when you are educated on a disability it removes some of the fear that you will somehow not be sufficient, if a need arises for you to assume the role of carer, even if the likelihood of that arising is in reality very low, and however briefly 🤔
They both seem so genuinely kind and intelligent. I hope they get many, many years of wonderful health and happiness together.
I am happy to see Rose find a great person for her. May they both have many blessed years together.
Oh, how much hope this gives me! Got into a relationship, go back out of a relationship because it was way too complicated. Tried telling a guy that we were childhood friends. And attempted to reconnect to him on 100% level platonic sort away. But he completely misunderstood me and thought I was trying to make moves on him. He tried rejecting me gently, but it was more like a brick through the metaphorical window. The only thing that kept it from hitting me was the fact that he was not using any cursing or bad words or profanity. Since then, I’ve been willing to put myself out there, but for a long time I wasn’t even willing to dress up cute. Now these days I do dress up cute I do go to social events on the campus, because I am absolutely mentally tired keeping myself away from the chance of finding true love. I don’t care what happened to my classmates! Enough is enough. If I watched one classmate, have a failed relationship and another one get into a very sticky situation in terms of what she thought was romantic love. Enough is enough do their life, and may be part of a past of mine, my past does not defined me and watching these interviews help realize, I just got to keep on putting myself out there! That being said, blessed be the couple ! ❤
Being a vulnerable, loving, honest, open and a gentle person will expose you to being abused and manipulated by people who are far more self-centered. However, as the saying goes 'treat others how you want to be treated', on the surface this seems like advice based on morality, but its message is far deeper and wiser than that. People flock to their own kind, by outwardly expressing the positive thoughts, feelings and actions you wish to receive, you are publicly broadcasting to like minded people. You are much more likely to attract someone who is willing to be vulnerable, loving, honest, open and gentle to you, if they feel that you value being these things to others as well. You will need to learn to strike a balance between remaining level headed enough to judge how people treat you through an external lens as if you were a concerned friend looking in, while simultaneously being able to dive deeply without hesitation into the mind, body and spirit of those waiting for you with open arms, who also share a desire to intimately connect with you. Do not be afraid to be hurt, the painful memories serve to provide darkness to contrast against the bright light of a truly loving relationship, after all, the people who appreciate the most are those who have had the least. Never become cynical, not only is it an ugly trait in otherwise beautiful people, but it will set off warning bells in people who would otherwise flood you with an open vulnerability, for is being cynical not just a defensive mechanism? The sad reality in creating intimacy with others, is that defensiveness prevents closeness, not only with people who will hurt you, but more tragically with people who could have completed you as a person. Being an older man who is a hopeless romantic that had to learn the harder lessons, I took the time to share my wisdom as I have a good feeling about you, to me it feels like you have the positivity and resilience to dust yourself off and keep trying, while also having the emotional sensitivity and awareness of yourself and others to be able to really make the most of the chances to find love, when they do appear for you. I think when it does happen for you, you are going to have a very good thing going. Take care. 😊
💕💕💕
Don’t let the negativity win 💪 you know who you are
Blayze seems so gentle and lovely
This video was beautiful. My boyfriend has chronic cancer, and it was really nice for me to hear about Blayze's perspective on things too. We don't know when it'll be, but at some point I will become my partner's caregiver. It just gave me hope for the future, and reminded me to count my blessings. Thank you for sharing this story.
These are some of my favorite videos because I'm a disabled woman and my boyfriend who I've been with for 8 years cares for me. I am independent in a few ways but he drives me to all the doctors, surgeries etc even the ones hours away, hes wonderful too.
Here from TikTok! We love you, Rose!
people that dont know these two are missing out. this man got this way without any friends or family.. ❤
These two are some of our best humans. If only there were more like them
I know an old school celebrity who had to quit her singing career because of this rare condition, it actually made her throat muscles so stiff that now she’s incapable of singing! Yet she hasn’t ever lost the ability to talk! She doesn’t however have the same co-morbid condition
I live with a very significantly debilitating painful condition (which badly needs more awareness, it's called Ehlers-Danlos Syndrome, and it too isn't curable and is progressive) and I am multisystemically affected, also have dysautonomia as a complication among many (spinal instability, mast cell activation syndrome etc) so I truly relate with a lot of what Rose is saying (also, my name is Rose too, I'm often called Rosie) .. Blayze is an amazing man. My husband should take a leaf lol (he has gotten better than he was, however.)
I have Ehlers Danlos Syndrome as well. It’s definitely difficult and needs treatment.
I wonder how this sweet boy can have no friend at all
I wonder also. I guess he's just fine with spending time alone? But he's found a partner which sounds lovely.
@@chlorophyllheart yes, Rose is lovely🤩 but I felt like Blaze would like to have friends, also.
I follow Rose on TikTok and she is just so super sweet, I’m so happy she has such a beautiful soul by her side because she deserves nothing less (BTW I met my fiancé online too) it was nice to hear a little more in depth about her life aside from the few minutes you see on TikTok. She is so brave and has done so well with her trach (I remeber right after was a bit of a learning curve and struggle) so happy to see you Rose and thank you Chris for sharing her story!
whats her tiktok ? i want to follow her too !
@@haleandguu thefairygrandmother
"You genuinely have a purpose here on earth, even if you don't know it." ❤❤❤❤
Wishing her the best of luck! What an amazing person!
Gosh what a beautiful couple Rose and Blayze are. Rose is soo articulate, so well presented, and her words so beautifully chosen, I could literally listen to her all day, and Blayze.. - Gosh as a mother he is the sort of partner you would only dream about for your child..
Aww thank you. Sadly we've decided never to have children because of the state of the world (and my body) and neither of us think we could handle it. I always wanted children but now I know it's not for me.
Wow! Both are extremely genuine and the sweetest people, a perfect match by the looks of it! Wishing Rose and Blayze all the best
The first battle is accepting a diagnosis and realizing that you will be living a new type of normal. I have so much respect for this beautiful young couple. As someone who has had a chronic disease for decades I realize that I will not always be able to do what others can. That being said I feel very fortunate and blessed especially when I see how debilitating someone like Rose’s life is. I do have my limitations but it’s more about living with chronic pain. Rose is wise beyond her years as are most people diagnosed with life altering/threatening diseases. I’m so happy she has found love with someone so wonderful. We need more young people like this in the world. Sending love from Canada.❤️🙏
Rose's voice and demeanor is so sweet, reminds me of a warm hug and freshly baked cookies. Her dress is so cute!
Bro is a ween fan, he is a homie for sure- much love to both of you, this is a beautiful thing for my old jaded heart to witness
These are two of the most beautiful people I’ve been blessed to hear speak about their challenges and outlook on life! Their love and devotion to each other is inspiring.
What an absolute sweetheart. I'd be so proud if my she was my daughter.
What a love story, they are such kind, loving people.
love you guys .I have spastic paraperisis which came from being born without a thyroid gland at all.Luckily it was spotted after 6 weeks otherwise I think I'd be gone. I dearly wish you all the luck in the world and Ive been married for 20 years and have 2 kids .....There is a future ....all my love Simon xx
I heard about this disease when Celine Dion came out about her diagnosis.
What a fantastic love story…I am in love with these two people…this is what we should all aspire to be to one another…congratulations to a beautiful Rose and the man of her dreams…such an amazing connection we all need to see. God bless you both Rose and Blayze..
From like 6-8 mins of this video might have just saved my life.
❤
How are you now?
I’m so appreciative of her vulnerability and honesty here! What a cool person
What a beautiful girl, hope she has a wonderful life ahead of her ❤❤❤❤😊🎉🎉🎉🎉
I wish her good health and many happy years. They seem like a great pair.
That mystical, spiritual experience that Rose had near death touched my soul deeply. ❤
One of the most beautiful interviews with two precious people. God bless you both for health, hope and happiness.
These people deserve the world ❤
What a beautiful couple. With all the shocking and horrible news in the world today, I can go to bed with a little happiness in my heart knowing that there is a special couple filled with love and devotion. Blayze, you might not have family and friends, but someone did something right to raise such a compassionate and wise young man. Wishing you a very long and happy life together. ❤
As a nurse it’s very thought provoking and interesting to see relationship partners who are at the same time caregivers navigate their relationship. I don’t know if I’d want to be the caregiver for a family member or partner.
Not everyone can do it. But Blayze excels
These people are so precious. Wish I was half the person they are..
What a beautiful couple!! Can’t wait to watch this ♡
Celine Dion has this too! hopefully you'll meet her too
I really lover her glasses! 🤓She has such a wonderful energy with her boyfriend. She might still improve significantly, miracles happen every day.
I pray for a miracle. Right now I'm in the midst of a major flare and even being my normal again would be wonderful.
She seems so sweet and innocent I would love to meet her in person
It can be a bit patronising to label people such as this as innocent. Obviously you did not mean to cause offence but I thought it would be worth pointing out.
Blayze describing the difference between witnessing a condition on TV-even an episode of SBSK-and the reality of co-existing with and loving a person who has a condition (and especially one that involves pain) is EVERYTHING.
So happy there are people like Blayze in the world, and for someone like Rose. Y’all are just lovely.
I have a rare disease that manifests in very similar ways to SPS. Learning about this condition has helped me explain my disease to others, and feel less alone.
As someone with juvenile onset parkinsons, this was the differential diagnosis they considered very strongly before finally figuring out PD.
Happy you found a happy love and life too Rose! You two make a lovely couple.
Off topic but I have to say. I have never seen a heptagon used in design like those glasses. I love them. Geometric design can produce some incredible stuff.
I've had fibromyalgia for 55years and have muscle spasms and pain. Your story is very encouraging and seeing you both together is lovely
Thanks to Rose and Blayze for sharing their story. It means a lot to me as someone with dysautonomia dealing with undiagnosed spasms and spasticity, and with the weight of dating as a physically disabled person at the back of my mind. I had never heard of Stiff Person Disease, and while I might not have it, I am thankful to have learned about it from Rose. I have recently developed the mindset that Rose and Blayze have and it helped so much during my last flare where I couldn’t walk. Thank you SBSK for featuring this couple. 💜💜
A beautiful young couple, articulate, likeable and empathic. I wish you two the very best!
I'm wearing a WEEN concert shirt!! That's so freaking awesome! Also the point he makes about stress while taking care of someone you love is very much on the money!
What a lovely couple 😊
I’m recovering from achalasia surgery right now, and my husband (and family) has been incredible. Reminds me every moment how lucky I am.
It doesn’t seem to matter how unwell I get, or how much of a burden I am, he just loves me.
I’m SO glad that Rose and Blayze have that too. I hope more people can get the same kind of mutual love too.
She seems very sweet, Im glad she found somebody who can love her and be there for her😊
What a genuine, loving, caring boyfriend. He's there for her every step of the way. He's a gem
Rose found an angel!
Rose and Blayze rock!!😊😊
Thank you Rose and Blaze for raising awareness about Stiff Person Syndrome from all those with SPS including myself . And Rose you inspire me to keep looking for my own happiness and to keep giving back and living my life with SPS to the fullest . Blaze you are such a kind gentle soul and I as a person with SPS value that you asked Rose on your first date where she wanted to go. Many blessings to you both and please reach out if you would like. Thanks SPS Strong!!!!
Indeed 🙏💕
What a beautiful relationship, so lovely to see you both there for each other.
Continue to love and grow together in love .
So happy for you .
Stay well .
Janice 👵 🇬🇧 xxx
Put a ring on it Blayze !!!!🎉
You have a new family now including us !
I’m so glad you are still here. You are loved sweet lady. 🌺❤️
What a beautiful young man. I'm so happy they found each other.
What a truly beautiful love story. My faith in humanity just received a huge boost!
Wow what an amazing young man she has as a boyfriend. He is so sweet to her and she seems so sweet too. Happy for both of them that they seem so happy together.
Rose is wonderful how shes coping and blaize is gentleman so loving i wish you happinnes and all the best ❤❤
What sweet souls. Is Blayze an angel? I think he may be! Best wishes for these two!
Two beautiful, sweet people. I had disautonomia as a child, from around 10-17. My challenges were different from Rose’s (my body’s temperature regulation, heart rate, blood pressure were most affected) but it was very surprising to me to hear someone else with this disorder. No one I’ve met has heard of it before.
Those two are the most awesome and blessed young people! Thank God they found each other. I think like Blayze a lot even about being happy to have running water all the time when so much of the world has to walk miles / hours just to get some to drink and bathe. He's the most gracious and caring gentleman. I wish the two of you many happy years together!
It is so cute to see how much they care about each other
What a beautiful couple, all the best to both of them. A breath of fresh air.
These two individuals are very articulate regarding their circumstances. They seem to be very informed and knowledgeable about their conditions ❤
Love seeing Rose! I follow her Instagram and was surprised to see the video.
Would it be possible to share her Instagram handle so we can follow too please, thank you 😊
What a cute couple. They are both amazing people.
Two bright, kind, loving young people who are meant for each other. ❤ Wonderful to see! 🎉
Now that’s a man! 😍🙌
And she is also amazing! ❤️
Wishing you both the happiest period of your lives ahead of you 🌟
I just got goosebumps hearing how she "grabbed the bar" That was the rod Heavenly Father asks us all to hold tight to. Beautiful!