Céline has Stiff-Person Syndrome

[smw]

I hope that one good thing that comes out of this devastating news is that the world will wake up to how iconic and special Celine Dion is and we’ll see her getting more of the honor, respect and recognition that she deserves. She is beloved and deserves an outpouring of love in the months and years to come.

 

For us huge fans, we’ve always known how special she is. Her talent, kindness, humbleness, humor… She is one of a kind. We’ve cherished her and we’ve been so lucky to take this ride and be fans of such an incredible woman. No matter what happens, we’re all Celine Dion fans for life. We’ll uphold her legacy that she and Rene built.

 

Her voice is immortal.

[Nmj]

I was only able to bring myself to watch each message once, but in the French one, doesn’t she say “the thought of not being able to sing again in unimaginable”, whereas in English she doesn’t?

This is clearly something she has considered… and is visibly crushed by it. I wonder if it’s inevitable, but fighter that she is, she’s not yet willing to admit it and make peace with it?

 

So, so sad.

 

I didn’t watch the French one, only the English message. That definitely wasn’t included in English and makes it more worrisome. I just hope Celine is able to pivot and do what she wants with a healthy few decades left to go in life.

[Nmj]

I hope that one good thing that comes out of this devastating news is that the world will wake up to how iconic and special Celine Dion is and we’ll see her getting more of the honor, respect and recognition that she deserves. She is beloved and deserves an outpouring of love in the months and years to come.

 

For us huge fans, we’ve always known how special she is. Her talent, kindness, humbleness, humor… She is one of a kind. We’ve cherished her and we’ve been so lucky to take this ride and be fans of such an incredible woman. No matter what happens, we’re all Celine Dion fans for life. We’ll uphold her legacy that she and Rene built.

 

Her voice is immortal.

 

What I do find ODD is certain people who have reached out to Celine and others who haven’t… on social media of course but still.

 

Barnev, Dawn, Elise, Law Roach, even pepe… that must’ve ended badly since he hasn’t said a thing or posted a thing, or even liked her video message.

 

I wonder if her band members were blindsided by this message and weren’t in the loop to how bad this actually was and maybe now as bad as they probably feel for Celine… they are probably trying to see what a future without being onstage means for their careers.

 

So many unanswered questions and uncertainty for everyone involved especially Celine.

Edited December 10, 2022 at 07:10 PM by Nmj

[anewdayhascome]

I really don't know how to cope with all of this. As many of you have said in various topics here, Celine has been with us during our good times and our bad times. But now she is the bad time and there is nothing to turn to... what would always make me feel better even in the worst moments, now just makes it even worse. I just can't listen to Celine songs because I am instantly falling apart...

[smw]

I assume her band / team were all notified before the public.

 

I also think there’s a lot of private messages going to Celine… so we’re not seeing all the support she’s receiving.

 

Edited December 10, 2022 at 07:20 PM by smw

[scielle]

I hope that the fact they kept some shows on and postponed others means they do actually believe she might be able to get back to performing. Hopefully it’s not just a ruse to give her a goal to work towards, but an actual expectation.

 

[scielle]

I assume her band / team were all notified before the public.

 

I also think there’s a lot of private messages going to Celine… so we’re not seeing all the support she’s receiving.

 

Yes, I’m sure they were. And if I knew her personally I’d send a private message, not an Insta post.

[smw]

[Nmj]

 

 

Yes, I’m sure they were. And if I knew her personally I’d send a private message, not an Insta post.

 

I’m sure you’d at least “like” her post in support and then maybe proceed to private message/ communicate with her.

[CelinesDIVO5]

 

 

What I do find ODD is certain people who have reached out to Celine and others who haven’t… on social media of course but still.

 

Barnev, Dawn, Elise, Law Roach, even pepe… that must’ve ended badly since he hasn’t said a thing or posted a thing, or even liked her video message.

 

I wonder if her band members were blindsided by this message and weren’t in the loop to how bad this actually was and maybe now as bad as they probably feel for Celine… they are probably trying to see what a future without being onstage means for their careers.

 

So many unanswered questions and uncertainty for everyone involved especially Celine.

 

Those closest to her will personally reach out. They don’t need to post on social media.

[smw]

Part of me has been wondering… was this Celine’s destiny even if she never started performing as a young girl and lived a normal life? Or did the pressures / demands of her career lead to this rare diagnosis?

 

I know we’ll never know the answer to that.

 

I’m a huge Karen Carpenter fan as well… and I’ve wondered the same thing about her. If she were never famous and didn’t face all the pressures and demands of fame, would she still have been plagued by anorexia?

[jpatdeleon09]

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[stevo]

Her body and mind have been through extraordinary stresses for so long. Yes she lives a pampered life but the pressure of it all, for so long surely must take their toll. She had RC and wanted to give it all up and tried to fight her way out of AND, she was ‘pumping my milk’ as she rehearsed for the second residency and was clearly extremely emotional throughout that launch. Then losing Rene, her brother, Maman, all the while going full tilt with performing. I just hope she is able to do what she wants and she isn’t being held ransom by some hideous contract/people out to make dollar.

[GoldenLeaf]

Part of me has been wondering… was this Celine’s destiny even if she never started performing as a young girl and lived a normal life? Or did the pressures / demands of her career lead to this rare diagnosis?

 

I know we’ll never know the answer to that.

 

I’m a huge Karen Carpenter fan as well… and I’ve wondered the same thing about her. If she were never famous and didn’t face all the pressures and demands of fame, would she still have been plagued by anorexia?

Considering that "ordinary" people suffer from stiff-person syndrome and it's a neurodegenrative desease, she'd likely have develloped it anyway, she just would have a lot less money to cope with it and would have difficulties to get the best doctors and the best treatments.

Edited December 10, 2022 at 08:20 PM by GoldenLeaf

[ryba]

Part of me has been wondering… was this Celine's destiny even if she never started performing as a young girl and lived a normal life? Or did the pressures / demands of her career lead to this rare diagnosis?

 

I know we'll never know the answer to that.

 

I'm a huge Karen Carpenter fan as well… and I've wondered the same thing about her. If she were never famous and didn't face all the pressures and demands of fame, would she still have been plagued by anorexia?

That´s a very good question. I think that Celine has been having health issues since the 90s, but she was pushing through. We know from that LTAL special in the late 90s that she already had spasms back then. Then we read about her having Globus in 2008. And now we learn about the stiff persion syndrom diagnosis. I think that all these things were already happening in the past, but probably on a smaller scale and she pushed trough, and now as she gets older, she experiences them heavily. I think that Celine is a very sensitive person that has been exposed to a tremendous amount of preassure and stress pretty much all her life since she was 12 and it has taken a toll. Edited December 10, 2022 at 08:22 PM by ryba

[mirage]

I hope for her and us that she at least will be able to do a final show.

 

Imagine being it your passion, what you love to do most ending like this? It's heartbreaking.

 

Still hoping it's just a bad dream and they did the wrong diagnosis.

 

I hope that the fact they kept some shows on and postponed others means they do actually believe she might be able to get back to performing. Hopefully it’s not just a ruse to give her a goal to work towards, but an actual expectation.

[PuraVida]

Wonder when I will be able to listen to her music. Besides the one song, it just feels too sad and emotional to hear her songs now.

[GoldenLeaf]

I hope for her and us that she at least will be able to do a final show.

 

Imagine being it your passion, what you love to do most ending like this? It's heartbreaking.

 

Still hoping it's just a bad dream and they did the wrong diagnosis.

I was thinking about the same thing the other day, what if they did the wrong diagnosis? Maybe she has several symptoms similar to the stiff-person syndrome without actually having the syndrome?

Edited December 10, 2022 at 09:13 PM by GoldenLeaf

[scielle]

I hope for her and us that she at least will be able to do a final show.

 

Imagine being it your passion, what you love to do most ending like this? It's heartbreaking.

 

Still hoping it's just a bad dream and they did the wrong diagnosis.

 

Well, the frightening comments are those from Scott Roeben in that Page Six article. Apparently word on the street in Vegas is she may not be able to perform again… and he has had the scoops in the past (remember, first to break the story about RW residency, a year before anyone else…)

 

I so hope he’s wrong on this one. 😔

Edited December 10, 2022 at 09:14 PM by scielle

[Nmj]

 

 

Well, the frightening comments are those from Scott Roeben in that Page Six article. Apparently word on the street in Vegas is she may not be able to perform again… and he has had the scoops in the past (remember, first to break the story about RW residency, a year before anyone else…)

 

I so hope he’s wrong on this one. 😔

 

Anyone would think that this disorder would have a great chance at meaning that Celine may never perform again. And she very well may not, but it’s telling that they didn’t just cancel everything the other day when making the disorder public, they are clearly hoping and intending on some sort of comeback. I think the Vegas show dream is OVER at this point, but I think she wants to have those European shows.

[CelinesDIVO5]

That´s a very good question. I think that Celine has been having health issues since the 90s, but she was pushing through. We know from that LTAL special in the late 90s that she already had spasms back then. Then we read about her having Globus in 2008. And now we learn about the stiff persion syndrom diagnosis. I think that all these things were already happening in the past, but probably on a smaller scale and she pushed trough, and now as she gets older, she experiences them heavily. I think that Celine is a very sensitive person that has been exposed to a tremendous amount of preassure and stress pretty much all her life since she was 12 and it has taken a toll.

 

What LTAL special?

[ryba]

What LTAL special?

the French special with Julie Snyder. She talks about having spasms because of the low corridors under the stage Edited December 10, 2022 at 09:56 PM by ryba

[mirage]

You would think that Vegas would be an easier option than traveling to Europe. But who knows why they didn't canceld all.

 

Positive thoughts for a premier in Amsterdam.

 

 

 

Anyone would think that this disorder would have a great chance at meaning that Celine may never perform again. And she very well may not, but it’s telling that they didn’t just cancel everything the other day when making the disorder public, they are clearly hoping and intending on some sort of comeback. I think the Vegas show dream is OVER at this point, but I think she wants to have those European shows.

[Nmj]

You would think that Vegas would be an easier option than traveling to Europe. But who knows why they didn't canceld all.

 

Positive thoughts for a premier in Amsterdam.

 

I would agree, and think that Vegas would probably be the most logical way to perform, if she ever performs again. I believe the only reason they are focusing on Europe is because those tickets are already sold, and will have to offer refunds. As of now, she may have a contract with resorts world in Las Vegas, but she doesn’t have any performances on the schedule anymore and doesn’t owe refunds as they were already paid back last October.

[scielle]

I’ve been listening to some interviews with Dr Tara Zier, who heads up the SPS Research Foundation. It’s so scary, the symptoms, the experience she describes. She was diagnosed in 2017 (took 3 years to get diagnosed because so few physicians have seen this). She was a practicing dentist, did karate.. had to quit it all because of the disability brought on by SPS.

Interestingly, in her case neurologists believe it was triggered by the death of her husband, which hyper-triggered her nervous system.

 

https://open.spotify.com/episode/4alEz2z5hXp5rKZwRMaspA?si=-7l2_T8OT7SJXbUADSd3Jw&context=spotify%3Ashow%3A4sqPqgPIbJ0sdTpTD4rr3X

https://podcasts.apple.com/us/podcast/c%C3%A9line-dion-reveals-diagnosis-of-rare-neurological/id1604604064?i=1000589551585

 

There’s only one research center, I believe, at Johns Hopkins. No funding for research because it’s so rare. There are some informative interviews with their top expert, Dr. Scott Newsome, here: https://stiffperson.org/resources/

 

[maki_Dion-er]

This is from 2020 but the person brought it up again. It made me cry.

 

Celine is one of the few celebs that is loved across all genres, ages, etc.

 

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[scielle]

Oops, double post. But since I’m at it, here’s the link to the SPS Research Center at Johns Hopkins: https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/stiff-person-syndrome/ Edited December 11, 2022 at 12:36 AM by scielle

[smw]

Oops, double post. But since I’m at it, here’s the link to the SPS Research Center at Johns Hopkins: https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/stiff-person-syndrome/

 

I appreciate all the information you’re sharing!

[Alex_Incognito]

We all need to take a moment and just breathe. None of us are specialists (and if any of you are...chime in) but it's not helpful to anyone if we speculate the future of Céline's career. I know we want to, but we just don't know enough yet.

[Overjoyed]

Tell me if anyone happen the same thing, hear Courage or even Recovering and cry wishing that this woman reborn and be better than ever...?