Céline has Stiff-Person Syndrome

[Ukrfan]

Was it in Ottawa that Celine struggled with her vocals? I thought the footage I'd seen was when she was singing A Vous but is Ottawa not primarily an English speaking City in Canada? Wonder why she stuck with that set-list rather than reverting to the English one??

 

Ottawa is the capital city, so Celine had more songs in French.

[scielle]

Was it in Ottawa that Celine struggled with her vocals? I thought the footage I’d seen was when she was singing A Vous but is Ottawa not primarily an English speaking City in Canada? Wonder why she stuck with that set-list rather than reverting to the English one??

Ottawa is the capital, so as a “government town” it’s more bilingual than any other city outside Quebec. Plus Gatineau is right there (it’s often called the Ottawa-Gatineau region). A lot of Quebeckers would have been at that show.

 

[Céline RO]

Was it in Ottawa that Celine struggled with her vocals? I thought the footage I’d seen was when she was singing A Vous but is Ottawa not primarily an English speaking City in Canada? Wonder why she stuck with that set-list rather than reverting to the English one??

 

Yes, it was in Ottawa. The setlist was a hybrid between the French and English versions, which is what Céline tends to do for shows in Ottawa.

[Jeanette]

I see, thanks for clarifying that everyone. I was wondering if this was normal for her in this City or if she stuck with the so called slightly easier songs out of necessity as we can now assume she was struggling with throat spasms that night. However, I now see the setlist still had a lot of big songs in there so that wouldn’t have made any difference really.

[Jeanette]

No wonder she quickly got rid of that halter neck dress for the Courage World Tour as she must’ve felt so restricted in the neck and throat area with the spasms. It was such a nicer cut on her than the other dress as well, it suited her shape brilliantly at that time with the toned shoulders and upper arms.

 

Bless her, stupid things we moaned or complained about and everything really was probably due to her struggles. Reducing the setlist the longer tour dates went on, dropping specific songs. Hell, even the changing back and forth to the corded mic. She was just trying everything to help herself sound better and be more comfortable out there. It all makes sense now.

Edited July 5, 2024 at 04:47 PM by Jeanette

[RosieBarron]

I remember she was unwell wasn’t she before the pandemic lockdowns?

 

Kev x

 

She was just before everything shut down while in New York. Remember some dramatic headlines about her being unwell and being tested for Covid. Seems like another world now.

[Céline RO]

 

 

She was just before everything shut down while in New York. Remember some dramatic headlines about her being unwell and being tested for Covid. Seems like another world now.

 

And comments such as “that’s what happens when you walk the streets of New York half naked in February”, which, to be fair and despite the exaggeration, they do have a point.

[Nmj]

No wonder she quickly got rid of that halter neck dress for the Courage World Tour as she must’ve felt so restricted in the neck and throat area with the spasms. It was such a nicer cut on her than the other dress as well, it suited her shape brilliantly at that time with the toned shoulders and upper arms.

 

Bless her, stupid things we moaned or complained about and everything really was probably due to her struggles. Reducing the setlist the longer tour dates went on, dropping specific songs. Hell, even the changing back and forth to the corded mic. She was just trying everything to help herself sound better and be more comfortable out there. It all makes sense now.

 

My first thought was the corded mic… she said she wanted to feel it for safety onstage. Part of me wonders if she felt more

Stable with the corded mic. Because nobody would opt for one because they like it unless they never move, I don’t care what she said. It constricts your movement and is a trip hazzard. I think she felt more stable with it.

[Peppercorn1991]

 

 

And comments such as “that’s what happens when you walk the streets of New York half naked in February”, which, to be fair and despite the exaggeration, they do have a point.

 

Excuse me? What? You’re joking right?

 

Kev x

[Nmj]

 

 

Excuse me? What? You’re joking right?

 

Kev x

 

I mean naked is one thing in Vegas right now it’s 117 degrees F

But in nyc in February? She should’ve been wearing a tent over herself.

[Céline RO]

 

 

Excuse me? What? You’re joking right?

 

Kev x

 

Those comments were very much real, and not coming from me. And while I think calling it “half naked” is an exaggeration, it is plausible that her not dressing appropriately for the weather when going out may have made her more susceptible to catching the cold that forced her to postpone the two shows, if it was indeed a cold and not SPS.

[kaye2023]

All this is true, but the topic was not "general difficulties in diagnosing SPS," but the question of whether her diagnosis is certain and on what basis. Since she is being treated with IVIG (this is not speculation, but a confirmed fact), it means that she is among the majority of patients whose disease has an autoimmune basis and this has been demonstrated by blood tests (rather than being part of a minority who only have similar symptoms). This is unrelated to the general difficulty in diagnosing SPS.

 

"It's all true no test can 100% beyond doubt it's SPS, though it's not a case of 'most likely it's SPS based on the symptoms (and symptoms history)', but most likely it's SPS based on diagnostic results including detected xyz in the blood (symptom) or dysfunctional excited muscles (symptom)." Oh, you....

 

Until they find a definitive or unique symptom or disease phenotype, then it is a case of 'most likely.' It is not the doctors' shortcoming, it is simply because a lot about the disease is unknown for now. She shares xyz symptoms with other SPS patients. If tomorrow they miraculously find a mysterious virus/fungi clinging to her, say, B-cells (which are what produce the antibodies), or maybe they suddenly discover oddly shaped B-cells (mutated), something not observed in other SPS patients, and deduce it's the cause of the autoimmune dysfunction (and consequently the muscle spasms) the standing SPS diagnosis will be revised even if she still has the same xyz symptoms. Like the Johns Hopkins quote, it's SPS until there's a better explanation.

 

And being treated with IVIG does not = 100% it's SPS. IVIG is used for a variety of diseases. What it does indicate is there is a similar autoimmune symptom that's being managed.

 

Besides no one is even saying with authority her doctor is wrong/it's a misdiagnosis, but only wishful thinking it's not SPS (or full blown SPS)/degenerative based on how atypical some signs from her are that's been made public. Clearly we all accept it is diagnosed SPS she's dealing with now.

 

If someone voluntarily speaks publicly about his/her rare disease (again: for which chapeau bas), he/she has to face the question type "What helped you so much?". All controversies, including those Davis talks about, are the consequence of her courageous and sovereign decision.

 

Agreed, but the onus is on Davis and other patients/orgs to organize the initiatives to raise those questions and get their answers and/or put forth more comprehensive info about the disease to the public. Leverage. Coordinate with her. Involve her. It would be illogical to assume that burden on one person just because she's a celebrity and that she should trumpet all imaginable concern about SPS (patients). They should also have some understanding SPS is an entirely new world she been thrown into and is still adjusting herself (her mortality, her life-long career at stake, her young children, prospect of full debilitation, etc).

 

Jeez, we all heard her say how she was filled with fear and has only started to hope with Piquet (imagine your worst fears suddenly depending on ONE person!), understanding should be a two-way street. Their concerns are valid, but they should collaborate instead of criticize.

[Ukrfan]

If despite having severe spasms, GAD65 antibodies, positive reaction to diazepam and IVIg, spasms caused by sudden touch - all of which are symptoms of SPS - some people still think it's something else and not SPS, well... I don't think anything can persuade them. Just like COVID deniers.

[Critiaslux]

When surfing on internet, you find quite a bunch of videos on SPS since last year.

 

Here another recent one from CBS Los Angeles (don’t think it was published here. Otherwise, apologies) :

 

[scielle]

More reaction from the SPS community here:

 

CBC Radio: How is Celine Dion's documentary being received by the stiff person syndrome community here in Quebec?

https://www.cbc.ca/listen/live-radio/1-383-lets-go/clip/16079691-how-celine-dions-documentary-received-stiff-person-syndrome

 

Ongoing theme is grateful for the awareness but there's need for more education and more research, and few have the resources that Celine does.

Edited July 8, 2024 at 06:10 PM by scielle

[superstar85ca]

More reaction from the SPS community here:

 

CBC Radio: How is Celine Dion's documentary being received by the stiff person syndrome community here in Quebec?

https://www.cbc.ca/listen/live-radio/1-383-lets-go/clip/16079691-how-celine-dions-documentary-received-stiff-person-syndrome

 

Ongoing theme is grateful for the awareness but there's need for more education and more research, and few have the resources that Celine does.

 

That's the same with any disease. People with money have access to better care. Celine is doing her SPS community a huge favour by donating money for research and creating awareness. She really doesn't have to do that

There are countless numbers of people who had no idea what SPS was before Celine spoke about it.

[superstar85ca]

She can't do right whatever she chooses to do.

 

It felt like they had all their hopes and expectations on Celine and this documentary.

 

However, I can understand the frustration of seeing someone out and about and doing all the things that you can't do anymore with the same disease.

 

Everything that the patients mention about triggers and how it affects their whole life, I'm curious how Celine is being able to do shows again.

 

Verstuurd vanaf mijn SM-F721B met Tapatalk

If she had cancer and was responding well to chemo, would anyone say anything? I dont understand how anyone would have anything negative about Celine getting treatments and living her life to the fullest. Do they think she should suffer in silence to make them feel better? The internet is so toxic for stuff like this. How much more of SPS awareness does she need to do? She had a seizure on camera FFS. She is getting the best treatment possible - well Good for her. She worked her whole life, made tons of money, is sick and can afford the best treatment possible. I hope she can do cartwheels in the middle of the street.

[scielle]

That's the same with any disease. People with money have access to better care. Celine is doing her SPS community a huge favour by donating money for research and creating awareness. She really doesn't have to do that

There are countless numbers of people who had no idea what SPS was before Celine spoke about it.

Exactly. Yet there are still unrealistic, and I think unfair, expectations being placed on her shoulders.

[Chantemoi]

One of Céline’s AND dancers says he himself has SPS. He also claims she saw his bare naked @ss more times than any other woman 😂

 

https://www.instagram.com/p/C89nqwexNYr/?igsh=MXc4c2s3dWNiMWM2Zg==

[Céline RO]

One of Céline’s AND dancers says he himself has SPS. He also claims she saw his bare naked @ss more times than any other woman 😂

 

https://www.instagram.com/p/C89nqwexNYr/?igsh=MXc4c2s3dWNiMWM2Zg==

 

I get the impression that SPS and generalized dystonia are not the same thing? That SPS is particular in some way

[Jeanette]

I’ve just quickly ran through the YouTube footage of the Ottawa Courage show where she struggled and oh my, much of it is painful to listen to. My heart breaks for her, what must she be thinking in those moments? This is the first time I have listened to it and honestly never has it been more apparent when she’s switching from pre-recorded to live, as almost every song she sang live sounds awful in parts and the mimed big hits obviously sound fine. It’s actually quite amazing that this didn’t happen more often during shows if the throat spasms have been ongoing for all these years. Makes me wonder if the heavier use of Valium started as a direct result of this show or if it had been going on for many years before. Not sure we’ll ever know the answer to that.

 

It really saddens me that she’s had to endure this both physically and mentally, it must’ve been so stressful for her during shows never sure if she’d make it through without something like this happening.

[jpatdeleon09]

I’ve just quickly ran through the YouTube footage of the Ottawa Courage show where she struggled and oh my, much of it is painful to listen to. My heart breaks for her, what must she be thinking in those moments? This is the first time I have listened to it and honestly never has it been more apparent when she’s switching from pre-recorded to live, as almost every song she sang live sounds awful in parts and the mimed big hits obviously sound fine. It’s actually quite amazing that this didn’t happen more often during shows if the throat spasms have been ongoing for all these years. Makes me wonder if the heavier use of Valium started as a direct result of this show or if it had been going on for many years before. Not sure we’ll ever know the answer to that.

 

It really saddens me that she’s had to endure this both physically and mentally, it must’ve been so stressful for her during shows never sure if she’d make it through without something like this happening.

 

Have you noticed after the outfit change her voice came back. I think she took valium so it can relax her muscles. + her sound guy did a great job mixing her live vocals with pre recorded vocals in The Power of Love.

[Jeanette]

 

 

Have you noticed after the outfit change her voice came back. I think she took valium so it can relax her muscles. + her sound guy did a great job mixing her live vocals with pre recorded vocals in The Power of Love.

 

I know people have mentioned that on here in the past but I honestly thought a lot of the high notes sounded poor throughout the whole show. Lying Down was terrible, although I realise she struggled with that consistently but this performance was on a different level of poor. I can see why that was dropped! I just felt for her while watching it.

 

Also, re The Power Of Love, it’s always a mixture of live and pre-recorded so didn’t pick up on any differences there.

[jpatdeleon09]

I know people have mentioned that on here in the past but I honestly thought a lot of the high notes sounded poor throughout the whole show. Lying Down was terrible, although I realise she struggled with that consistently but this performance was on a different level of poor. I can see why that was dropped! I just felt for her while watching it.

 

Also, re The Power Of Love, it's always a mixture of live and pre-recorded so didn't pick up on any differences there.

 

https://www.youtube.com/watch?v=qA4K2DjxiI8

 

Actually on the Power of Love before the chorus is always live then the pre recorded kicks in but for this show it was more of a live vocals with pre recorded vocals being lower in volume.

 

After the Power of Love her voice became strong again. That's where I think she took valium to relax her muscles. But still her voice that night were not consistently strong in high notes. But after that show maybe around March of 2020 her voice was great!

Edited July 14, 2024 at 06:36 PM by jpatdeleon09

[GoldenLeaf]

 

 

https://www.youtube.com/watch?v=qA4K2DjxiI8

 

Actually on the Power of Love before the chorus is always live then the pre recorded kicks in but for this show it was more of a live vocals with pre recorded vocals being lower in volume.

 

After the Power of Love her voice became strong again. That's where I think she took valium to relax her muscles. But still her voice that night were not consistently strong in high notes. But after that show maybe around March of 2020 her voice was great!

Hmm... no, it's not instantly. Valium’s onset of action is typically occurring within 30 to 60 minutes after taking the medication by mouth.

Edited July 16, 2024 at 01:56 AM by GoldenLeaf

[jpatdeleon09]

 

Hmm... no, it's not instantly. Valium’s onset of action is typically occurring within 30 to 60 minutes after taking the medication by mouth.

 

Hmmm i wonder what drug she took then

[GoldenLeaf]

 

 

Hmmm i wonder what drug she took then

I wonder the same thing, but maybe she took the Valium like 30 minutes before the show, or she took a different drug.

Edited July 16, 2024 at 02:11 AM by GoldenLeaf

[stone]

 

 

https://www.youtube.com/watch?v=qA4K2DjxiI8

 

Actually on the Power of Love before the chorus is always live then the pre recorded kicks in but for this show it was more of a live vocals with pre recorded vocals being lower in volume.

 

After the Power of Love her voice became strong again. That's where I think she took valium to relax her muscles. But still her voice that night were not consistently strong in high notes. But after that show maybe around March of 2020 her voice was great!

 

I think she definitely took Valium during the first break and voice got better during the rest of the show but started giving back out by the end. Also I just noticed the lights weren’t circling her during MHWGO….

[PuraVida]

She did have some great vocal moments on the Courage World Tour, though. Maybe I will come back and link some. But overall, you could tell there was something different with her and her voice during that period.

[Jeanette]

She did have some great vocal moments on the Courage World Tour, though. Maybe I will come back and link some. But overall, you could tell there was something different with her and her voice during that period.

 

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?