Céline has Stiff-Person Syndrome

[Céline RO]

 

 

I’d be interested in that, if you get a chance. Thanks 🙏🏻 Also quite keen to watch a full show on YouTube as being in the UK, never got to see this concert unfortunately, although I was booked for 2 shows. Any idea from the full shows on there which is the most consistent vocally?

 

Baltimore, 24 February 2020.

 

Edited July 17, 2024 at 10:21 AM by Céline RO

[ordinary fan]

Baltimore, 24 February 2020.

 

https://youtu.be/QOnCCiDoFPA

She is really shining here all throughout the show :wub: gosh I love you Celine

[nuts2you]

Baltimore, 24 February 2020.

 

https://youtu.be/QOnCCiDoFPA

 

This was my last set of show ,before the shut down ,

[smw]

 

 

Baltimore, 24 February 2020.

 

 

That might be the best IYAMT performance I’ve seen from the Courage tour. She was (seemingly) really hitting her stride with the show before lockdown. Little did we know all she was dealing with.

[CelinesDIVO5]

 

 

That might be the best IYAMT performance I’ve seen from the Courage tour. She was (seemingly) really hitting her stride with the show before lockdown. Little did we know all she was dealing with.

 

The pride on Scott’s face as she comes out of the bridge is priceless.

[LeChauffeur100]

I’ve been wondering how her next performances are gonna be like. Maybe with less light effects? What if a crysis starts to appear in the middle of a song? Should the band be trained to turn every song into an interlude, just in case? Those are some practical questions and aren’t meant to sound rude or anything, I just keep thinking about the next time we’ll see her perform and what would it look like.

[Jeanette]

I think it’s going to be hard finding a balance with what she can handle on stage, re triggers etc. I would assume though that she would only consider returning to the stage if all these triggers are somewhat under control, as sound, lights etc are all essential parts of performing and she obviously can’t perform without these core elements so surely all that’s been considered and under control with the treatments she’s currently on, giving her the belief that she can return to the stage once again, and the voice being rehabilitated as well, of course.

 

There’s also the expectation of the people who’re paying the money to see a show. In this modern age, everyone expects a show to be a show and Celine’s have perhaps not lived up to some production standards of others as it is so although the die hard fans would pay just to hear her perform without the theatrics, many people won’t, especially in Vegas.

[Abodi2002]

 

 

Baltimore, 24 February 2020.

 

Montreal 2020 was really strong too but footage isn’t as good. Brooklyn 3rd night is another honorable mention. I find the other March 2020 shows sound a bit tired and shaky.

[jpatdeleon09]

1721257979[/url]' post='2455754']

I think it's going to be hard finding a balance with what she can handle on stage, re triggers etc. I would assume though that she would only consider returning to the stage if all these triggers are somewhat under control, as sound, lights etc are all essential parts of performing and she obviously can't perform without these core elements so surely all that's been considered and under control with the treatments she's currently on, giving her the belief that she can return to the stage once again, and the voice being rehabilitated as well, of course.

 

There's also the expectation of the people who're paying the money to see a show. In this modern age, everyone expects a show to be a show and Celine's have perhaps not lived up to some production standards of others as it is so although the die hard fans would pay just to hear her perform without the theatrics, many people won't, especially in Vegas.

 

I think that’s why she goes to concert maybe to see if it still triggers her illness since she’s receiving the right medicine now.

 

I don’t think there’s an expectation to the people going to her show because if she does a show it would be a great production that’s why she can sold out shows. So, it’s not just the fans.. especially in Vegas. Tho, I’m the one that wants a really big production ala A New Day maybe because that’s the first concert that I ever watched then Taking Chances followed. Then, my very first concert that I saw in person is the 2018 Summer Tour, So, the big production really cements in my mind. But for others they will still go that’s why even a simple show back in 2016-2018 Summer Tours - I think that’s the most simple shows that she ever did since 00’s and yet the tours are still sold out.

 

I think the expectations now is not the production but If she can still sing. But for me with her current situation, I think going big production with huge LEDs with great visuals, stage props, dancers can cover some issues with her current voice. I think great production can be mesmerizing that can take the attention of viewers to the visuals more.

 

So far, I like the production of Adele in Vegas! Lots of great visuals!

Edited July 18, 2024 at 06:36 AM by jpatdeleon09

[Céline RO]

1721268943[/url]' post='2455762']

Montreal 2020 was really strong too but footage isn't as good. Brooklyn 3rd night is another honorable mention. I find the other March 2020 shows sound a bit tired and shaky.

 

From Montreal 2020 there are two performances I particularly like:

 

Beauty and the Beast

https://youtu.be/2YdQUXXYGCg

 

Tous les blues sont écrits pour toi

https://youtu.be/EvZ1MezQdgs

 

She did some rare things in both, like going up on the “somebody bends” in BATB, which she used to do in Vegas when she returned in 2011, or the ending of TLBSEPT.

[Abodi2002]

 

 

From Montreal 2020 there are two performances I particularly like:

 

Beauty and the Beast

https://youtu.be/2YdQUXXYGCg

 

Tous les blues sont écrits pour toi

https://youtu.be/EvZ1MezQdgs

 

She did some rare things in both, like going up on the “somebody bends” in BATB, which she used to do in Vegas when she returned in 2011, or the ending of TLBSEPT.

true, and the “not forsake” in Power of Love on the 18th was strong too. The D5s in River deep Mountain high were really good, I believe that was from the 19th.

[scielle]

Update on research progress: https://www.linkedin.com/posts/amanda-piquet-md-faan-63936b83_kyvernas-kyv-101-receives-us-fda-rmat-activity-7219700601419395073-9zpT

[lyn]

I was actually wondering if Celine is one of those clinical trials. Not like I know how clinical trials work, but I was imagining she’s more capable (financially, logistically) to take on experimental treatments that maybe the average patient couldn’t, that could really help explore possibilities.

[Dancing_Queen]

I was just finishing the book "Céline Dion - La vraie histoire" (by Laurence Pieau and Hervé Tropéa).

 

Now I know the book has been discussed on the forum before, but not in this context (at least I don't remember, correct me if I'm wrong).

 

I want to share because (to me at least) it puts a whole new light on the situation.

 

 

I will add the original text between spoiler tags and then the Google translation below:

 

 

French original text:

 

 

Monique Giroux se rappelle la longue interview que Céline lui a accordée - entre minuit en 3 heures du matin - juste après une représentation au Caesars Palace: "Elle est arrivée au bras de son chiropracteur parce qu'elle avait du mal à marcher. Elle était en vêtements d'intérieur. Son chiropracteur a installé un gros coussin chauffant et humide sur son fauteuil, elle a allongé ses jambes sur la table basse et on a fait l'interview comme ça, pendant trois heures. [...] Malgré la souffrance, souligne Monique Giroux, la star s'est montrée pro, "très rieuse et très disponible". 

 

 

Entend-elle les messages que lui envoie son corps? Oui, mais elle ne les écoute pas toujours. "Je suis mon pire ennemi!" nous a-t-elle un jour confié.

 

"Je l'ai vue réveiller la nuit sa massothérapeute pour avoir des massages", nous raconte Denise Bombardier. "Les médecins font partie de sa vie." Dans son ouvrage, la romancière rapporte d'ailleurs avoir assisté à une scène de grande douleur : "Après un concert à Munich, écrit-elle, dans l'avion qui nous ramenait à Berlin, j'ai vu la chanteuse qui venait de réussir une autre performance: se tordre de douleur, la nuque en feu, courbée sous les spasmes." Denise Bombardier évoque "les courbatures, les points au creux de la poitrine, les nausées, les douleurs abdominales, ces signaux fréquents que le corps lui renvoie".

 

 

 

English translation:

 

 

Monique Giroux remembers the long interview that Celine gave her - between midnight and 3 a.m. - just after a performance at Caesars Palace: "She arrived in the arms of her chiropractor because she had trouble walking. She was in loungewear. Her chiropracter installed a big damp heating pad on her chair, she stretched her legs out on the coffee table and we did the interview like that, for three hours. [...] Despite the suffering, Monique Giroux points out, the star was professional, "very laughing and very available". 

 

Does she hear the messages her body is sending her? Yes, but she doesn't always listen to them. "I'm my own worst enemy!" she once told us.

 

 

"I saw her wake up her massage therapist at night to have massages," Denise Bombardier tells us. "Doctors are part of his life."

In her book, the novelist reports having witnessed a scene of great pain:

"After a concert in Munich," she writes, "on the plane back to Berlin, I saw the singer who had just succeeded in another performance: writhing in pain, her neck on fire, bent under spasms." Denise Bombardier evokes "aches, stitches in the hollow of the chest, nausea, abdominal pain, these frequent signals that the body sends back to her".

 

 

 

I'm not sure when the interview with Monique Giroux took place, but I assume she is talking about their encounter in 2007 as I can't find another.

But let's just say - for argument's sake - that these were just 'normal' back problems.

 

But then Denise Bombardier talks about the episode in Germany in 2008.

 

If we only go by Céline's account, she was 'just' having vocal spasms at that point.

 

But what Denise describes sounds much more serious. In fact, it sounds like she was having a full-blown SPS-attack right there and then (if not a full-blown attack, at least a precursor to it).

Why is Céline downplaying/minimizing the initial onset? Why on earth did René not intervene?

Finishing the tour is one thing, but how could he encourage her (push her?) to do Vegas before getting to the bottom of this? (there is no way she would have objected to spending more time with her babies)

Is this when the medications started?

[lyn]

Oh gosh that’s really hard to read (never heard about this book)… feels like a really sad foreshadowing. And I wouldn’t be so quick to judge anyone… it sounds so easily chalked up to “exhaustion.” Remember this disease is so unknown, and she can seem so healthy otherwise, and even the interviewers don’t seem terribly alarmed.

[Mudo]

I was just finishing the book "Céline Dion - La vraie histoire" (by Laurence Pieau and Hervé Tropéa).

 

Now I know the book has been discussed on the forum before, but not in this context (at least I don't remember, correct me if I'm wrong).

 

I want to share because (to me at least) it puts a whole new light on the situation.

 

 

I will add the original text between spoiler tags and then the Google translation below:

 

 

French original text:

 

 

Monique Giroux se rappelle la longue interview que Céline lui a accordée - entre minuit en 3 heures du matin - juste après une représentation au Caesars Palace: "Elle est arrivée au bras de son chiropracteur parce qu'elle avait du mal à marcher. Elle était en vêtements d'intérieur. Son chiropracteur a installé un gros coussin chauffant et humide sur son fauteuil, elle a allongé ses jambes sur la table basse et on a fait l'interview comme ça, pendant trois heures. [...] Malgré la souffrance, souligne Monique Giroux, la star s'est montrée pro, "très rieuse et très disponible". 

 

 

Entend-elle les messages que lui envoie son corps? Oui, mais elle ne les écoute pas toujours. "Je suis mon pire ennemi!" nous a-t-elle un jour confié.

 

"Je l'ai vue réveiller la nuit sa massothérapeute pour avoir des massages", nous raconte Denise Bombardier. "Les médecins font partie de sa vie." Dans son ouvrage, la romancière rapporte d'ailleurs avoir assisté à une scène de grande douleur : "Après un concert à Munich, écrit-elle, dans l'avion qui nous ramenait à Berlin, j'ai vu la chanteuse qui venait de réussir une autre performance: se tordre de douleur, la nuque en feu, courbée sous les spasmes." Denise Bombardier évoque "les courbatures, les points au creux de la poitrine, les nausées, les douleurs abdominales, ces signaux fréquents que le corps lui renvoie".

 

 

 

English translation:

 

 

Monique Giroux remembers the long interview that Celine gave her - between midnight and 3 a.m. - just after a performance at Caesars Palace: "She arrived in the arms of her chiropractor because she had trouble walking. She was in loungewear. Her chiropracter installed a big damp heating pad on her chair, she stretched her legs out on the coffee table and we did the interview like that, for three hours. [...] Despite the suffering, Monique Giroux points out, the star was professional, "very laughing and very available". 

 

Does she hear the messages her body is sending her? Yes, but she doesn't always listen to them. "I'm my own worst enemy!" she once told us.

 

 

"I saw her wake up her massage therapist at night to have massages," Denise Bombardier tells us. "Doctors are part of his life."

In her book, the novelist reports having witnessed a scene of great pain:

"After a concert in Munich," she writes, "on the plane back to Berlin, I saw the singer who had just succeeded in another performance: writhing in pain, her neck on fire, bent under spasms." Denise Bombardier evokes "aches, stitches in the hollow of the chest, nausea, abdominal pain, these frequent signals that the body sends back to her".

 

 

 

I'm not sure when the interview with Monique Giroux took place, but I assume she is talking about their encounter in 2007 as I can't find another.

But let's just say - for argument's sake - that these were just 'normal' back problems.

 

But then Denise Bombardier talks about the episode in Germany in 2008.

 

If we only go by Céline's account, she was 'just' having vocal spasms at that point.

 

But what Denise describes sounds much more serious. In fact, it sounds like she was having a full-blown SPS-attack right there and then (if not a full-blown attack, at least a precursor to it).

Why is Céline downplaying/minimizing the initial onset? Why on earth did René not intervene?

Finishing the tour is one thing, but how could he encourage her (push her?) to do Vegas before getting to the bottom of this? (there is no way she would have objected to spending more time with her babies)

Is this when the medications started?

 

I did mention before when I first saw the documentary that her issue is a combination of lack of empathy from her team including Rene by being pushed to go from 1 tour (AND) to another (TCWT) without a good long break in between, Celine's dismissive attitude against her own body problems, her desire to please her fans and the doctors not being able to correctly diagnose her illness. Her case could have been healed if she told the full truth to Rene and the doctors but secretly she wanted to keep it under wrap so that nobody freaks out. Then came back Rene's cancer in 2013 so her own health problems took a backseat literally until COVID hit in 2020 and forced her to sit down and start the healing process.

[kaye2023]

Earlier, we argued talked about how Céline speaking about her case can only be a win-win for disease awareness and for the patient community, in context of criticisms doing so the way she does and what she says/feels about her own case.

 

Here's a concrete way her voice has helped patients--from another site:

 

"My father has been battling stiff person syndrome for 15 years now. The drug (Rituxan) that helps the most costs nearly 40 grand a year on its own to administer for just two doses six months apart, and was rejected by Medicare and private insurance both until this last year when Celine Dion’s struggle made this rare disease finally known to a wider audience. I hate that it takes her struggling for this kind of thing to happen, but it’s a tiny silver lining that my dad gets the drugs he needs now to eke out a few more years without having to blow the entirety of his life savings. Thank you Celine."

 

How awesome is that Win-win.

[Jeanette]

This is that “higher calling” at work right there that she thinks she was perhaps meant for in being one of the “1 in a million” to be struck with this illness. I’m sure this story would make her happy, I hope she sees it. Great news!

[scielle]

Earlier, we argued talked about how Céline speaking about her case can only be a win-win for disease awareness and for the patient community, in context of criticisms doing so the way she does and what she says/feels about her own case.

 

Here's a concrete way her voice has helped patients--from another site:

 

"My father has been battling stiff person syndrome for 15 years now. The drug (Rituxan) that helps the most costs nearly 40 grand a year on its own to administer for just two doses six months apart, and was rejected by Medicare and private insurance both until this last year when Celine Dion’s struggle made this rare disease finally known to a wider audience. I hate that it takes her struggling for this kind of thing to happen, but it’s a tiny silver lining that my dad gets the drugs he needs now to eke out a few more years without having to blow the entirety of his life savings. Thank you Celine."

 

How awesome is that Win-win.

 

On the one hand, a heartwarming story. On the other, as is often the case with stories like this in the US, it only goes to show how supremely f****d up the US healthcare system is.

[Jeanette]

Probably no concrete truth to this article but fingers crossed there’s something in it and that she’s working on something else. A slow and steady build up may well be just what the doctor ordered. Maybe Shamrock wasn’t too off the mark when he suggested she may take to the stage with Neyo for a one off performance of Incredible. Sounds like these one song appearances may be just the ticket for her right now.

 

https://www.google.com/url?q=https://www.mirror.co.uk/3am/celebrity-news/celine-dions-next-move-after-33425684.amp&sa=U&ved=2ahUKEwj-nbi7vuaHAxVphv0HHRWkEa0QyM8BKAB6BAgREAI&usg=AOvVaw0rAR_cDIEaq0iZXCEaY6tU

[scielle]

Probably no concrete truth to this article but fingers crossed there’s something in it and that she’s working on something else. A slow and steady build up may well be just what the doctor ordered. Maybe Shamrock wasn’t too off the mark when he suggested she may take to the stage with Neyo for a one off performance of Incredible. Sounds like these one song appearances may be just the ticket for her right now.

 

https://www.google.com/url?q=https://www.mirror.co.uk/3am/celebrity-news/celine-dions-next-move-after-33425684.amp&sa=U&ved=2ahUKEwj-nbi7vuaHAxVphv0HHRWkEa0QyM8BKAB6BAgREAI&usg=AOvVaw0rAR_cDIEaq0iZXCEaY6tU

 

I mean, a number of tabloids have published some version of this article in recent days, and none of them say anything that isn’t known or obvious. And you and I could have come up with those “insider” quotes. They’re just logical conclusions to be drawn from what we know. I don’t think there’s any particular newsworthiness to them. Just tabloids filling empty space to generate clicks.

[Céline RO]

Probably no concrete truth to this article but fingers crossed there’s something in it and that she’s working on something else. A slow and steady build up may well be just what the doctor ordered. Maybe Shamrock wasn’t too off the mark when he suggested she may take to the stage with Neyo for a one off performance of Incredible. Sounds like these one song appearances may be just the ticket for her right now.

 

https://www.google.com/url?q=https://www.mirror.co.uk/3am/celebrity-news/celine-dions-next-move-after-33425684.amp&sa=U&ved=2ahUKEwj-nbi7vuaHAxVphv0HHRWkEa0QyM8BKAB6BAgREAI&usg=AOvVaw0rAR_cDIEaq0iZXCEaY6tU

 

At no point does the article say “one off” or “single song”. Plus we know that a new Vegas show is in the works - it has literally been confirmed by Céline herself multiple times - we just don’t know when, but it’s certainly within months.

[Jeanette]

 

 

At no point does the article say “one off” or “single song”. Plus we know that a new Vegas show is in the works - it has literally been confirmed by Céline herself multiple times - we just don’t know when, but it’s certainly within months.

 

I know Vegas is all but confirmed and is a matter of when but like other forum members have been saying of late, I think she’s likely going to need to make at least another one or two appearances before announcing the residency as the public need to be fully convinced she’s ready and in hindsight, although the worldwide stage of the Olympic’s Opening Ceremony, was a great place for her comeback, I’m not 100% sure the public will be fully convinced just yet.

[scielle]

Well, this is interesting: https://www.instagram.com/p/C-cqLHuuCm1/?igsh=MTY3NTM5dW5yZXc5Zw==

[Céline RO]

 

 

I know Vegas is all but confirmed and is a matter of when but like other forum members have been saying of late, I think she’s likely going to need to make at least another one or two appearances before announcing the residency as the public need to be fully convinced she’s ready and in hindsight, although the worldwide stage of the Olympic’s Opening Ceremony, was a great place for her comeback, I’m not 100% sure the public will be fully convinced just yet.

 

Yes, that seems reasonable. I’m thinking she might do a few talk show appearances (with or without performances) when the shows are announced.

[ewh12]

Another insightful interview with Dr. Piquet who, like the rest of us, saw Célines performance in amazement. I also learned that it does affect eye movements. Did not know that before. Seems like she is passionate continuing to fight SPS and really making Colorado a destination for patients.

 

https://www.cpr.org/2024/08/07/interview-dr-amanda-piquet-celine-dion-colorado-hospital-donation-stiff-person-syndrome/

[scielle]

Another insightful interview with Dr. Piquet who, like the rest of us, saw Célines performance in amazement. I also learned that it does affect eye movements. Did not know that before. Seems like she is passionate continuing to fight SPS and really making Colorado a destination for patients.

 

https://www.cpr.org/2024/08/07/interview-dr-amanda-piquet-celine-dion-colorado-hospital-donation-stiff-person-syndrome/

 

Thanks for that!

Interesting that she mentions the Kyverna therapy again. Probably years away given how long these things take, but hope for the best in that study.

[scielle]

Well, this is interesting: https://www.instagra...TM5dW5yZXc5Zw==

 

Here's the video:

[jpatdeleon09]

 

 

Here's the video:

 

I like the guy singing the chorus of Because You Loved Me. He is singing it like Celine. He is feeling it! Even the movements lol

[Abodi2002]

We know that Celine herself confirmed she started having issues in 2008 but do we think it’s possible they could’ve started at some point during the a new day residency, or that maybe that residency could’ve caused some of her issues due to the crazy schedule? There were a lot of nasal moments throughout it, similar to that of mid 2008.