Céline has Stiff-Person Syndrome

[Dancing_Queen]

This article gave me hope so I thought I'd share (it's about a young patient that went into clinical remission after an experimental treatment) :

 

https://stiffperson.org/what-is-stiff-person-syndrome/understanding-sps/patient-stories.html/article/2023/08/01/my-sps-story-rachel-hallstrom?fbclid=IwAR0Hio7XtTVRrFugVlx5t5ZnCreaZXUSdLOC-zVdr6ykSI6eQYBxQgVcA70

 

I also finally got around to donating some of my refund money to the fight against SPS in Céline's honour. It's nothing much, but it felt good to do something.

[Zofia]

This article gave me hope so I thought I'd share (it's about a young patient that went into clinical remission after an experimental treatment) :

 

https://stiffperson....SI6eQYBxQgVcA70

 

I also finally got around to donating some of my refund money to the fight against SPS in Céline's honour. It's nothing much, but it felt good to do something.

 

Unfortunately, the usefulness of Eculizumab in the treatment of SPS is rather limited (here is a recent article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10421785/ ), but it is certain that each patient's success gives us a little much-needed hope...

[Celinelife]

https://www.instagram.com/reel/CuPgV5kIjmT/?igshid=MzRlODBiNWFlZA==

 

I miss her so much

[PuraVida]

Reading the Wikipedia page for the disease gave me a lot of clarity. Being reminded of the full impact of her disease is heartbreaking.

 

https://en.wikipedia.org/wiki/Stiff-person_syndrome

[LukeD]

I just realised it has now been over 7 years since her last French studio album. The biggest gap ever! I believe the second biggest was between D'elles and Sans Attendre at 5.5 years.

[PuraVida]

Time flies...somehow we are getting used to a world without Celine in the public eye.

[Zofia]

Reading the Wikipedia page for the disease gave me a lot of clarity. Being reminded of the full impact of her disease is heartbreaking.

 

https://en.wikipedia...person_syndrome

 

It's all the more heartbreaking because, as her brother said, "she always goes through with things and wants to know exactly what happens to her", so she's probably perfectly aware of what fate awaits her if she is not lucky enough to find effective treatment.

 

During my journey through Quebec, I browse through Laurence Catinot-Crost's book - I'll write a few words about it after I've finished reading; in general, it's not worth the effort (I can't say "disappointing" because my expectations were nil), but as an anthology of quotations it's okay.

 

What strikes me again during this reading is Céline's attitude in the face of the biggest obstacles: difficulties getting pregnant, the long illness and death of René and other loved ones. To say that she "stays positive" is a bit of an understatement, as there are basically two kinds of optimists: the evasive and the heroic. The former are far more numerous: they practice wishful thinking to the point of denying reality. But Céline always showed the opposite: a willingness to confront the problem without looking away, and at the same time that kind of fascinating humility towards life that characterizes the most courageous. Fighting fiercely to keep control, but at the same time not deluding herself about her omnipotence, not dreaming in color that "everything depends on us" - this is quite an exceptional attitude among figures of her status, accustomed to the power of money.

 

She would still have a lot to prove, even without going back into show business, provided she managed to deal with the disease and wasn't too devastated by it.

[anewdayhascome]

Time flies...somehow we are getting used to a world without Celine in the public eye.

 

I can't get used to that. I'm sad all the time

[PuraVida]

During my journey through Quebec, I browse through Laurence Catinot-Crost's book - I'll write a few words about it after I've finished reading; in general, it's not worth the effort (I can't say "disappointing" because my expectations were nil), but as an anthology of quotations it's okay.

 

Did you plan/time your holiday in Quebec because of Celine? Or is it a happy coincidence?

 

Before I wasn't entirely sure how the disease would affect her ability to sing. I mean, she's always said that she sings "with her whole body" and I of course took that literally. And there was some speculation that the spasms could be directly affecting her vocal cords.

 

But the Wikipedia makes it pretty clear that "Rigid trunk (torso) muscles can also prevent the chest and abdomen from expanding, causing shortness of breath..." I don't know why I previously thought the trunk meant the lower parts of her body. The disease actually starts at the place's most vital for a singer...her chest and abodmen muscles. And if she can't expand those, then the very essence of her singing is under threat. Not to mention the Olympian, acrobatic singing that she is known for with all the long notes/belting, etc.

 

I wonder if muscles can be de-regidified after they've become rigid due to the syndrome. Surely her physical therapist and massage therapist must be playing a part in slowing down that rigidifying process. But I am curious how someone who is hyper-sensitive to touch can reliably undergo physical/massage therapy without triggering the spasms...

 

Edited September 26, 2023 at 04:20 PM by PuraVida

[Zofia]

Did you plan/time your holiday in Quebec because of Celine? Or is it a happy coincidence?

 

Yes and no Now I've developed a relationship with Quebec that isn't directly linked to Céline, but she's always there behind the scenes. She helps me understand Quebec culture, and in reverse, Quebec gives me a better grasp of her identity.

 

This time, I've set aside a day to go to Charlemagne. Admittedly, "ça pas d'bon sens" ("it doesn't make sense"), as everything has changed and even her family home no longer exists, but I simply felt the need to rediscover her childhood paths.

 

Before I wasn't entirely sure how the disease would affect her ability to sing. I mean, she's always said that she sings "with her whole body" and I of course took that literally. And there was some speculation that the spasms could be directly affecting her vocal cords.

 

But the Wikipedia makes it pretty clear that "Rigid trunk (torso) muscles can also prevent the chest and abdomen from expanding, causing shortness of breath..." I don't know why I previously thought the trunk meant the lower parts of her body. The disease actually starts at the place's most vital for a singer...her chest and abodmen muscles. And if she can't expand those, then the very essence of her singing is under threat. Not to mention the Olympian, acrobatic singing that she is known for with all the long notes/belting, etc.

 

I wonder if muscles can be de-regidified after they've become rigid due to the syndrome. Surely her physical therapist and massage therapist must be playing a part in slowing down that rigidifying process. But I am curious how someone who is hyper-sensitive to touch can reliably undergo physical/massage therapy without triggering the spasms...

 

 

As for SPS and the singer's profession... Yes, this disease in most cases affects breathing. To support the voice properly, you need the muscles (especially the abdominal muscles) in all their strength and suppleness, so yes, you don't sing with vocal cords alone, but with the whole body (even without getting into the vocal acrobatics that Céline specialized in).

 

Here's a recent testimonial from Jennifer Trujillo, also a singer diagnosed with SPS: https://www.news.com.au/lifestyle/health/health-problems/washington-woman-jennifer-trujillo-opens-up-about-stiff-person-syndrome-battle/news-story/ae48f1c8f0d29ffd739cef84973dcc0b

 

From what SPS sufferers themselves say, their sensitivity to triggers varies from person to person, and in someone susceptible, from day to day. If only possible, physiotherapy (aquatherapy, massage, but also electrostimulation or acoustic wave stimulation of muscles) is highly recommended. Of course, it's not a "cure", but it can slow down the progression of the disease and is often more effective than medication in relieving pain. A blessing in disguise, Céline can afford it.

[joaofilho]

Yes and no Now I've developed a relationship with Quebec that isn't directly linked to Céline, but she's always there behind the scenes. She helps me understand Quebec culture, and in reverse, Quebec gives me a better grasp of her identity.

 

This time, I've set aside a day to go to Charlemagne. Admittedly, "ça pas d'bon sens" ("it doesn't make sense"), as everything has changed and even her family home no longer exists, but I simply felt the need to rediscover her childhood paths.

 

 

 

As for SPS and the singer's profession... Yes, this disease in most cases affects breathing. To support the voice properly, you need the muscles (especially the abdominal muscles) in all their strength and suppleness, so yes, you don't sing with vocal cords alone, but with the whole body (even without getting into the vocal acrobatics that Céline specialized in).

 

Here's a recent testimonial from Jennifer Trujillo, also a singer diagnosed with SPS: https://www.news.com...39cef84973dcc0b

 

From what SPS sufferers themselves say, their sensitivity to triggers varies from person to person, and in someone susceptible, from day to day. If only possible, physiotherapy (aquatherapy, massage, but also electrostimulation or acoustic wave stimulation of muscles) is highly recommended. Of course, it's not a "cure", but it can slow down the progression of the disease and is often more effective than medication in relieving pain. A blessing in disguise, Céline can afford it.

 

Seeing this report and thinking about Celine gave me a pain in my heart. My God, what a horrible disease this is. God Bless these people.

[manu23]

Here's a recent testimonial from Jennifer Trujillo, also a singer diagnosed with SPS: https://www.news.com...39cef84973dcc0b

 

Dear God, I hope Celine's case is not this severe. I can't believe she might be going through such pain

[LukeD]

I had a nightmare yesterday that Celine had passed away. It was horrible. I really really need an update to at least see her even if she is not doing any better.

[Nmj]

I had a nightmare yesterday that Celine had passed away. It was horrible. I really really need an update to at least see her even if she is not doing any better.

 

I think it’s a great testament to Celine’s personality that her small group around her doesn’t talk or spill information to the media. I don’t count Claudette who clearly isn’t in that circle on a day to day basis.

 

But I agree someone should update us. At least send us a video from Celine. I hope she’s better even if just slightly.

[KyleVan41]

It’ll be a full year soon since we had an update. We know that SPS can be mild or severe such as the video. Surely to god Celine’s is not that bad just based on how we’ve seen her to date. Plus like I’ve pointed out several times before I don’t think resorts world or her team would use the language they regarding a future return if she was severe. Celine herself last said she “can’t wait to see us”. I do not believe that if she was in the extreme end that would be the language. Finally Resorts World has told a journalist I was chatting with that they’re hopeful she’s in the theatre in 2024. Again - why that message if her condition is dire.

[CelinesDIVO5]

It’ll be a full year soon since we had an update. We know that SPS can be mild or severe such as the video. Surely to god Celine’s is not that bad just based on how we’ve seen her to date. Plus like I’ve pointed out several times before I don’t think resorts world or her team would use the language they regarding a future return if she was severe. Celine herself last said she “can’t wait to see us”. I do not believe that if she was in the extreme end that would be the language. Finally Resorts World has told a journalist I was chatting with that they’re hopeful she’s in the theatre in 2024. Again - why that message if her condition is dire.

 

RW could be hopeful because they haven’t heard any news as well.

[KyleVan41]

 

 

RW could be hopeful because they haven’t heard any news as well.

 

Possibly but I think they know more than they can let on. The next line up of acts announced shortly will be telling as Katy and Luke are both exiting. If we get 2 or 3 new big acts I’d say Céline is off their radar for now ….

Edited September 27, 2023 at 07:11 PM by KyleVan41

[Zofia]

Clearly, we'd love an official update, but its absence is no less significant.

 

Moreover, the hyper-optimistic Claudette recently suddenly changed tone, saying in her interview for Hello, abundantly quoted by the media, that the family is "praying for a miracle", that the spasms occur in "every muscle" and the pain is difficult to relieve (in this disease these last two factors unfortunately testify to the seriousness of the problem). I confess I was very surprised by this dramatic tone in Claudette's mouth - the one who from the very beginning of Céline's health worries did everything to suggest that "it's nothing serious". I even hoped that the interview would turn out to have been distorted by the tabloid. But on Quebec TV, asked by Marie-Louise Arsenault if Hello had paid her and if her "openness" didn't bother Céline, Claudette didn't correct this, adding that all her statements are at least authorized by Linda ("I always make sure I don't reveal information I don't have"). The only point at which she remains reassuring is not her sister's condition, but her "morale".

 

Finally, "we're praying for a miracle" is not a good sign after almost a year of the most advanced treatments.

 

Fortunately, none of this means that remission is out of the question. This disease is very unpredictable: on the one hand, this prevents any planning, on the other, it keeps us hopeful, even if things are probably not going well at the moment.

 

Postscript: And as a side note to Jenn Trujillo's recording: no, her disease is not the most severe; she has a life, stays active in her social media and takes care of her children. Those with really severe SPS are neither active nor relatively independent like her.

[anewdayhascome]

I had a nightmare yesterday that Celine had passed away. It was horrible. I really really need an update to at least see her even if she is not doing any better.

 

This is actually perfect!!! In my family there is a theory that if you have a nightmare and you will say out loud what a terrible thing happened in a dream, it will never come true!!!! So far it's worked for me!

[LukeD]

This is actually perfect!!! In my family there is a theory that if you have a nightmare and you will say out loud what a terrible thing happened in a dream, it will never come true!!!! So far it's worked for me!

Yes same here! We do say this in my country! Fingers crossed!

[zuv]

I got so emotional watching an old interview from her this morning. I started tearing up. She’s so precious. She needs to get her health back. She’s the most deserving humain being on this planet. She brings so much joy to so many. I’m not ready for her to not be with us.

 

 

 

Edited September 28, 2023 at 07:31 PM by zuv

[PuraVida]

But I agree someone should update us. At least send us a video from Celine. I hope she’s better even if just slightly.

 

The criticism of Team Celine's lack of updates, attention to fans, engagement, skill, competence, etc. will probably be with us until the end of time. I've readily joined that chorus often, becaues I've felt it was warranted.

 

But on the matter of giving us an update these days, I don't think (Team) Celine owes us one or should give us one. Even though it would be amazing to see her, we can assume that she is not getting much better, and (hopefully) not getting much worse. Her short-term and medium-term future are still very much in the air, so there really is no update to give. And it just creates more frenzy online/in the media. Better to announce when a big change or milestone happens health-wise, in my opinion.

 

I think it's most likely we get another "Merry Christmas" message. That would be nice.

[Squall]

I can't get Celine out of my mind. I think about her every day, wondering how she is doing. Wishing there was something we could do for her.

 

I was just at the gym and I was thinking how I wish Sony was doing something to show support for her. I was thinking a tribute concert that raised money for Stiff Persons Syndrome would be nice. Have a lot of performers that have worked with Celine, or inspired by Celine, perform her songs. Open a charity drive in Celine's name to drive money towards research for this. I know I would donate. Plus all the other people that it would help.

 

It just feels like since Celine has come out with this illness she has just been forgotten. I think a lot of performers would love to pay tribute to her. Imagine Shania performing "If Walls Could Talk." That'd be amazing. Imagine if Mariah was one of the performers! I don't think that would ever happen but I can dream. Barbra doesn't have much of a voice anymore but I know Celine would be touched to have her idol perform for her.

[zuv]

I can't get Celine out of my mind. I think about her every day, wondering how she is doing. Wishing there was something we could do for her.

 

I was just at the gym and I was thinking how I wish Sony was doing something to show support for her. I was thinking a tribute concert that raised money for Stiff Persons Syndrome would be nice. Have a lot of performers that have worked with Celine, or inspired by Celine, perform her songs. Open a charity drive in Celine's name to drive money towards research for this. I know I would donate. Plus all the other people that it would help.

 

It just feels like since Celine has come out with this illness she has just been forgotten. I think a lot of performers would love to pay tribute to her. Imagine Shania performing "If Walls Could Talk." That'd be amazing. Imagine if Mariah was one of the performers! I don't think that would ever happen but I can dream. Barbra doesn't have much of a voice anymore but I know Celine would be touched to have her idol perform for her.

 

The idea is thoughtful but it would look reallyyy bad in the public eye. Cause literally no one else is affected by that disease. Theres a lot more other diseases with much much MUCH higher prevalence that need attention and support and dont get any.

[CelinesDIVO5]

 

 

The idea is thoughtful but it would look reallyyy bad in the public eye. Cause literally no one else is affected by that disease. Theres a lot more other diseases with much much MUCH higher prevalence that need attention and support and dont get any.

 

They say it’s 1 in a million because it’s difficult to diagnose. Fundraising for research would generate not only more awareness within the medical community, but it would also make diagnosing people a lot easier, and possibly lead to early detection. Which, with any disease is the best case scenario.

[Squall]

They say it's 1 in a million because it's difficult to diagnose. Fundraising for research would generate not only more awareness within the medical community, but it would also make diagnosing people a lot easier, and possibly lead to early detection. Which, with any disease is the best case scenario.

 

Right. There are probably a lot of people out there with the disease who haven't even been properly diagnosed because their doctors have never seen it before. Drawing more attention to it, and funding, would help so many people.

[Zofia]

On the one hand, yes, a public collection linked to a major event and associated with Céline's name is undoubtedly eagerly awaited and would be much appreciated by the patient community (in the case of rare diseases it's a vicious circle: the less known they are, the rarer they are diagnosed, and so on).

 

On the other hand, the situation seems particularly delicate, and without Céline's consent, I don't think Sony, for example, could do anything. We saw this at the "Pour toi, Céline" concert in Quebec City: it was conducted by her orchestra conductor and her musicians took part, so you'd think she'd at least be aware of it and accept the idea. However she did not publicly address any words to the participants, even in writing (according to her brother, on the day of the concert, she didn't even know their number or names), and some risky choices from her repertoire ("Vole", "Et je t'aime encore"), given her total absence and silence, seemed awkwardly equivocal.

 

I don't think anyone will organize a big event after this adventure until Céline herself has given the go-ahead. Will she? In all likelihood, she needs more time. Her life has been turned upside down very suddenly; she may still be living in denial or hoping to "get rid of" the problem rather than integrate it into her new identity. Not to mention her physical condition, which we don't know about, the psychic adjustment to such an illness must be incredibly difficult. Sometimes it takes years, as in the case of Michael J. Fox...

[PuraVida]

I can't get Celine out of my mind. I think about her every day, wondering how she is doing. Wishing there was something we could do for her.

 

I was just at the gym and I was thinking how I wish Sony was doing something to show support for her. I was thinking a tribute concert that raised money for Stiff Persons Syndrome would be nice. Have a lot of performers that have worked with Celine, or inspired by Celine, perform her songs. Open a charity drive in Celine's name to drive money towards research for this. I know I would donate. Plus all the other people that it would help.

 

It just feels like since Celine has come out with this illness she has just been forgotten. I think a lot of performers would love to pay tribute to her. Imagine Shania performing "If Walls Could Talk." That'd be amazing. Imagine if Mariah was one of the performers! I don't think that would ever happen but I can dream. Barbra doesn't have much of a voice anymore but I know Celine would be touched to have her idol perform for her.

 

I think we all wish we could do something to make her illness go away. If love was enough as her song says...she is loved by so many.

 

I agree that Sony could/should do more. Even if a tribute concert were to be too delicate, they could & should be doing more. Some of us have emailed about TCOML album anniversary, that's a start. And the Love Again wave is still going a little bit...but they could be releasing stuff for the fans, updating or remastering songs/videos, etc. etc.

 

And I think Barbra would still sound super beautiful btw Although it is funny, I did notice Lara Fabian was notably absent from the Pour Toi concert. By the way, I thought the reporting on that tribute concert said that she did know about the concert in advance. She was invited to attend, but understandably couldn't.

[Squall]

Some of us have emailed about TCOML album anniversary, that's a start. And the Love Again wave is still going a little bit...but they could be releasing stuff for the fans, updating or remastering songs/videos, etc. etc.

 

I'd love it if the albums were rereleased as "complete" editions with all the country-exclusive songs all packed into one. I already have all the songs but I'd buy the albums all over again. They could literally release anything Celine at this point and I'd buy it.

[Davey84]

Not totally related to Céline's situation, but somehow yes...

 

Gerald de Palmas (Tomber/ ten days) ends his singer career because of voice problems.☹️

 

 

Hello everyone,

my new album, “Sous un soleil de plomb”, will be released on Friday November 10.

I put all my energy and all my heart into it, but it will be the last of my career.

A recurring voice problem leaves me in permanent uncertainty, and I never know from one day to the next what the state of my voice will be.

It's manageable for recording because I can choose when I'm on top, but not for touring or promoting.

Faced with this dilemma, I prefer to stop.

I thank you all for following me for over 30 years, and for giving me such a great career.

Gerald.

 

https://fb.watch/nATGPOiOxt/

 

I fear the day we will get this message from Céline