Céline has Stiff-Person Syndrome

[Cuchi]

Not sure if it's already been posted any other thread, but here is a picture of her visiting the Isabella Stewart Gardner Museum in Boston on Friday:

 

Edited March 25, 2024 at 10:20 AM by Cuchi

[mb011]

This is so funny yet beautiful moment.

 

https://www.instagram.com/reel/C5CTwyCxvOb/?igsh=NXY2MGI5cDdyeTht

 

Sent from my SM-S916B using Tapatalk

 

 

[ScotieG]

This is so funny yet beautiful moment.

 

https://www.instagram.com/reel/C5CTwyCxvOb/?igsh=NXY2MGI5cDdyeTht

 

Sent from my SM-S916B using Tapatalk

 

I love that she tries to leave and they keep going; she’s like “this bloody song again.”

[ryba]

I like the fact that she acts like a very normal approachable human being and not like a huge famous diva, even in private

[AllaneZ]

I miss her so much and I always praying for her recovery

[scielle]

New interview with Claudette: https://www.lequotidien.com/arts/musique/2024/04/13/claudette-dion-la-faute-de-rene-angelil-la-faute-de-celine-ILIA2JRGLFENZDH7FBSVP3UWNI/

She says she’s in touch with Celine regularly by phone and text. But no real update there, she just says

«Elle est tellement un être humain exceptionnel : courageuse, talentueuse et disciplinée. C’est pour ça que tant de gens s’intéressent à sa santé. Je sais qu’elle est disciplinée et qu’elle va tout faire pour revenir un jour sur scène et revivre ce qu’elle vivait à l’époque avec René.»

«Je sais qu’à Las Vegas, il y a trois heures de décalage, alors je ne la texte pas avant midi. On se lance souvent des conneries, elle a gardé son sens de l’humour malgré tout ce qui lui arrive. Et ses enfants Nelson et Eddie l’aident beaucoup, ils ont 13 ans et ils sont déjà plus grands qu’elle»

«J’ai compris pourquoi Céline n’a pas voulu insister pour que ses enfants continuent d’habiter une maison où il y avait tant de souvenirs de René. C’était la même chose dans le quartier Henderson, à Las Vegas, où elle avait fait défaire les murs de la pièce qui était autrefois le bureau de René, car pour les enfants, c’était la ‘‘pièce à Papa’' et ça leur rappelait des souvenirs trop douloureux. Ils ont maintenant une nouvelle maison à eux»

Edited April 13, 2024 at 01:13 PM by scielle

[Nmj]

New interview with Claudette: https://www.lequotidien.com/arts/musique/2024/04/13/claudette-dion-la-faute-de-rene-angelil-la-faute-de-celine-ILIA2JRGLFENZDH7FBSVP3UWNI/

She says she’s in touch with Celine regularly by phone and text. But no real update there, she just says

«Elle est tellement un être humain exceptionnel : courageuse, talentueuse et disciplinée. C’est pour ça que tant de gens s’intéressent à sa santé. Je sais qu’elle est disciplinée et qu’elle va tout faire pour revenir un jour sur scène et revivre ce qu’elle vivait à l’époque avec René.»

«Je sais qu’à Las Vegas, il y a trois heures de décalage, alors je ne la texte pas avant midi. On se lance souvent des conneries, elle a gardé son sens de l’humour malgré tout ce qui lui arrive. Et ses enfants Nelson et Eddie l’aident beaucoup, ils ont 13 ans et ils sont déjà plus grands qu’elle»

«J’ai compris pourquoi Céline n’a pas voulu insister pour que ses enfants continuent d’habiter une maison où il y avait tant de souvenirs de René. C’était la même chose dans le quartier Henderson, à Las Vegas, où elle avait fait défaire les murs de la pièce qui était autrefois le bureau de René, car pour les enfants, c’était la ‘‘pièce à Papa’' et ça leur rappelait des souvenirs trop douloureux. Ils ont maintenant une nouvelle maison à eux»

 

So we heard that the Summerlin home was never moved into by Celine but now they are saying she moved out of the original Henderson home that she and Rene lived in since 2003. I wonder where she’s living now? And also, it seems Claudette has finally learned how answer questions about Celine without giving the media fuel saying things that get lost in translation like “ she has lost all control of her muscles”.

[Céline RO]

1713013475[/url'>' post='2445723']

New interview with Claudette: https://www.lequotid...ZDH7FBSVP3UWNI/

She says she's in touch with Celine regularly by phone and text. But no real update there, she just says

«Elle est tellement un être humain exceptionnel : courageuse, talentueuse et disciplinée. C'est pour ça que tant de gens s'intéressent à sa santé. Je sais qu'elle est disciplinée et qu'elle va tout faire pour revenir un jour sur scène et revivre ce qu'elle vivait à l'époque avec René.»

«Je sais qu'à Las Vegas, il y a trois heures de décalage, alors je ne la texte pas avant midi. On se lance souvent des conneries, elle a gardé son sens de l'humour malgré tout ce qui lui arrive. Et ses enfants Nelson et Eddie l'aident beaucoup, ils ont 13 ans et ils sont déjà plus grands qu'elle»

«J'ai compris pourquoi Céline n'a pas voulu insister pour que ses enfants continuent d'habiter une maison où il y avait tant de souvenirs de René. C'était la même chose dans le quartier Henderson, à Las Vegas, où elle avait fait défaire les murs de la pièce qui était autrefois le bureau de René, car pour les enfants, c'était la ''pièce à Papa'' et ça leur rappelait des souvenirs trop douloureux. Ils ont maintenant une nouvelle maison à eux»

 

I suppose a non-update is better than imprecise statements which get turned into inaccurate, alarming “news”…

 

The only surprising thing is what she says about the house(s) in Vegas. As far as we know, she sold the Summerlin home and presumably still lives in her old house. Maybe they found the Summerlin house to be too big and not cosy enough and so found a better place elsewhere? What strikes me though is that Claudette says “Henderson, à Las Vegas”. One could infer that the current residence that she’s talking about is not in Vegas at all. I know it’s far-fetched, but could Céline and the kids have set up a temporary residence in Boston and be staying there on a more permanent basis than we initially thought. Just trying to put together the pieces of the puzzle.

Edited April 13, 2024 at 02:35 PM by Céline RO

[comingback]

 

 

I suppose a non-update is better than imprecise statements which get turned into inaccurate, alarming “news”…

 

The only surprising thing is what she says about the house(s) in Vegas. As far as we know, she sold the Summerlin home and presumably still lives in her old house. Maybe they found the Summerlin house to be too big and not cosy enough and so found a better place elsewhere? What strikes me though is that Claudette says “Henderson, à Las Vegas”. One could infer that the current residence that she’s talking about is not in Vegas at all. I know it’s far-fetched, but could Céline and the kids have set up a temporary residence in Boston and be staying there on a more permanent basis than we initially thought. Just trying to put together the pieces of the puzzle.

 

Could be. Does she have a house or an apartment in Boston?

[Céline RO]

Okay I just got round to reading the whole interview that Scielle posted above and the statement about Céline not wanting the boys to live in a house with so many memories of René seems to be in relation to the Île Gagnon house that Céline stopped using a decade ago and eventually sold. And then she talks about the remodeling they did in Henderson, so they could still be living there. Except the “nouvelle maison à eux” part still doesn’t fit.

[Céline RO]

Could be. Does she have a house or an apartment in Boston?

 

Not that I know of.

[rfkavanagh]

Okay I just got round to reading the whole interview that Scielle posted above and the statement about Céline not wanting the boys to live in a house with so many memories of René seems to be in relation to the Île Gagnon house that Céline stopped using a decade ago and eventually sold. And then she talks about the remodeling they did in Henderson, so they could still be living there. Except the “nouvelle maison à eux” part still doesn’t fit.

 

I took the "nouvelle maison" bit to mean that, after the remodeling, it was like a new house to them.

[scielle]

Darrell Cherry, who had HSCT for SPS in the winter of ‘23, has updated his blog for the first time in a while. It’s really promising, despite a recent setback. Worth a read: https://thestiffman.com/h/f/two-steps-forward-one-step-back

Hopefully this is a positive step forward for others in the SPS community.

[jpatdeleon09]

Didn’t we see a glass house from pictures before assuming it’s her new house. Remember the grass and the glass house?

 

Also, from her videos it suits that modern glass house with the interior theme of black and white

[Zofia]

This is probably just a few words about the upcoming symposium, but the SPS Research Foundation has spread this news. Content is not available in Europe, so I'm linking blind: https://www.wtnh.com/on-air/nyberg/nyberg-raising-awareness-of-stiff-person-syndrome/?fbclid=IwAR073-KIKNFopIT56kyqQUaMnH8R2dlNUwy7-3pT3ottjR9kI_uvlyu-WBY

[jpatdeleon09]

From that link

 

NEW HAVEN, Conn. (WTNH) — The renowned singer, Céline Dion, has become a beacon for raising awareness about Stiff Person Syndrome (SPS), an uncommon autoimmune neurological disorder.

 

SPS has profoundly impacted Dion’s ability to sing and has caused debilitating muscle stiffness and pain.

During a recent interview, Dr. Andrew McKeon of the Mayo Clinic and David Axelrod, a patient associated with the Stiff Person Research Foundation, shed light on this challenging condition.

 

Axelrod shared his personal journey with SPS, revealing the difficulty of obtaining a diagnosis after enduring symptoms for 14 years. He described the disorder’s effects, which include full-body muscle rigidity and spasms, ultimately sidelining his active lifestyle.

 

Dr. McKeon highlighted the diagnostic complexities of SPS, emphasizing the disorder’s triggers, such as loud sounds, which can exacerbate symptoms. He discussed ongoing research efforts focused on autoimmune causes and potential treatment avenues.

Edited April 18, 2024 at 05:49 PM by jpatdeleon09

[Ajax]

No one is talking about Dion doing the France Vogue cover ? Will be revealed tonight.

[stevo]

No one is talking about Dion doing the France Vogue cover ? Will be revealed tonight.

 

We have been, in the random discussions thread

[Céline RO]

Someone posted this in the Facebook fan group and I couldn’t agree more. Not directed at anyone here, just that this person expressed my own view probably better than I could.

 

From the very beginning I believed, and continue to believe, that Céline will manage to not only enjoy a full life in private but also make a full comeback performing for us like the Céline we’ve always known, both in Vegas and on tour.

[incognito]

Someone posted this in the Facebook fan group and I couldn’t agree more. Not directed at anyone here, just that this person expressed my own view probably better than I could.

 

From the very beginning I believed, and continue to believe, that Céline will manage to not only enjoy a full life in private but also make a full comeback performing for us like the Céline we’ve always known, both in Vegas and on tour.

 

Yeah there was never any doubt in my mind that she would make a comeback. I don’t see a massive world tour in her future but I am sure the Queen of Vegas will be back.

 

[Peppercorn1991]

 

 

Yeah there was never any doubt in my mind that she would make a comeback. I don’t see a massive world tour in her future but I am sure the Queen of Vegas will be back.

 

I actually think a steady tour would be possible at some point. Celine isn’t ruling it out so neither should we.

 

Kev x

[scielle]

I actually think a steady tour would be possible at some point. Celine isn't ruling it out so neither should we.

 

Kev x

 

Well, Vegas would be the more likely, safer, predictable next step. But what saddens me about that is it would be short show ("Vegas length" so people can go gamble & spend), consisting primarily of the English hits and little or no French. And the French repertoire is what I personally care about.

Maybe a solution here is to also do a mini-residency in Paris.

[Nmj]

 

 

Well, Vegas would be the more likely, safer, predictable next step. But what saddens me about that is it would be short show ("Vegas length" so people can go gamble & spend), consisting primarily of the English hits and little or no French. And the French repertoire is what I personally care about.

Maybe a solution here is to also do a mini-residency in Paris.

 

I’m sure if she returns to the stage, it’ll have some French shows somewhere whether in Canada or France or both.

It wouldn’t even surprise me that when and if she’s ready for the stage again, that her very first show is actually in her home country first. I know she has a Vegas contract but I’m curious whether if it stipulates her returning there “first”.

 

 

[RosieBarron]

 

 

Well, Vegas would be the more likely, safer, predictable next step. But what saddens me about that is it would be short show ("Vegas length" so people can go gamble & spend), consisting primarily of the English hits and little or no French. And the French repertoire is what I personally care about.

Maybe a solution here is to also do a mini-residency in Paris.

 

There's also the fact that tickets to the new residency cost an arm and a leg. On top of flights from the UK and hotels etc that would be a pricy trip for me. Was very pleased to still have tickets to the European tour when it was all announced so I could just put going to Vegas out of my mind.

[Mudo]

Straight from vogue France website

Q: You'll no doubt be back on stage, touring again.

 

A: I can't answer that… Because for four years I've been saying to myself that I'm not going back, that I'm ready, that I'm not ready... As things stand, I can't stand here and say to you: "Yes, in four months." I don't know... My body will tell me. On the other hand, I don't just want to wait. It's morally hard to live from day to day. It's hard, I'm working very hard and tomorrow will be even harder. Tomorrow is another day. But there's one thing that will never stop, and that's the will. It's the passion. It's the dream. It's the determination.

 

[scielle]

I wonder what the SPS community’s reaction is to this. Anyone monitoring? I personally haven’t seen much yet.

[Nmj]

I wonder what the SPS community’s reaction is to this. Anyone monitoring? I personally haven’t seen much yet.

 

I haven’t seen much. However, I’d assume the documentary is what they are waiting to react to.

[Mudo]

I wonder what the SPS community’s reaction is to this. Anyone monitoring? I personally haven’t seen much yet.

 

Her answer is what expected from a SPS recovering patient looks like, that is if she truly recovered. Like NMJ let's wait for the documentary, I would still say that from that quotation from Vogue France, she still has good and bad days albeit maybe less bad days because she is on the out and about enough to look healthier than other SPS patients that do not have the doctors and money she has. I wouldn't expect the documentary to drop a bomb saying she will be back in x months on stage given that this interview is recent and was filmed after the documentary I presume.

[scielle]

I had posted in the wrong thread. By “this”, wasn’t referring to the specific quotation above but rather today’s Vogue article as a whole. It’s full of the sort of language and phraseology I’ve come to expect from Celine, but not really saying that much at all. Realistic but full of her trademark optimism. I just hope she truly feels that optimism deep down, and isn’t just outwardly projecting it.

I wonder if she has engaged with the SPS community at all yet, small as it is. It must be hard having so many desperate people’s expectations projected onto you.

[Zofia]

I wonder what the SPS community's reaction is to this. Anyone monitoring? I personally haven't seen much yet.

 

There is very little reaction so far. This online environment is small and close-knit. The discussion that erupted on the occasion of the Grammys revealed a lot of bitterness and frustration, so this time the moderator of one group asked in private messages for restraint. Comments are almost non-existent; in one group, two former singers exchange experiences (“Even when I can sing, I can only get out a couple songs before throat and vocal spasms start to happen”; “My biggest issue is breath control and fatigue. It is such a physical issue"); in another group someone wrote: “ While it's great she's raising awareness, not all with SPS have her resources or can physically train like that. I know many who cannot even move without breaking a bone! Lots have no choice but to stay home.” Remarkably, none of the patients who run their own social media profiles (at least none of the ones I follow) have even liked the posts about Vogue.

 

But is this surprising? After the initial enthusiasm, the fervent support expressed to her and the hope that a famous face will change a lot, comes the inevitable disappointment. Céline herself says honestly: they don't have the means for good treatment, I have the means. If someone only had her wealth, but not her fantastic character, they wouldn't be able to cope with the disease. However, this also works the other way: a wonderful character without financial resources won't help much either.

 

One can't be surprised that Céline is focusing on her own life, career and showing up in the best shape possible for now. She has been ill for only the second year - a very short time for a chronic illness. And one can hardly be surprised at the patients who, for the time being, have recognized that despite her common diagnosis, her life has little connection to theirs. Because it is, after all.

 

But this is just the beginning of the journey. Maybe the documentary will make a difference... I dream that Céline will one day initiate a fundraiser for this community - research is one thing, and reimbursement for services (such as rehabilitation, the importance of which she herself experiences) is another. Patients with more common diseases can get help from various foundations, but the fate of most patients with diseases as rare as SPS is really worse than we think.

Edited April 23, 2024 at 06:13 PM by Zofia