Céline has Stiff-Person Syndrome

[Nmj]

 

 

In around 30% of patients, it stops helping so effectively in an average of around 2.6 years since the beginning of the treatment.

 

Here:

 

s*** this isn’t that positive.

[Ukrfan]

s*** this isn’t that positive.

 

What also worries me is that in the study, patients had monthly IVIg, while Celine is getting it weekly... I just hope it won't accelerate getting used to it

[Nmj]

 

 

What also worries me is that in the study, patients had monthly IVIg, while Celine is getting it weekly... I just hope it won't accelerate getting used to it

 

Likely meaning her SPS is more advanced and needs it more often, also worries me. Hopefully a medical breakthrough is on the horizon.

[tshlw]

Likely meaning her SPS is more advanced and needs it more often, also worries me. Hopefully a medical breakthrough is on the horizon.

 

Also remember she said was getting them once every 3 weeks and now at once a week. So yeah it is worrisome. But hopefully new treatments are coming.

Edited June 27, 2024 at 02:44 PM by tshlw

[chloejsing]

After seeing the documentary, reading more about the disease, etc - I just want Celine to be healthy and happy and not push herself too hard to return to the stage. Knowing she can have a crisis from good emotions as well - I don’t know, it all just seems so risky and like she could accelerate the progression of the disease, esp since people are mentioning the ivig therapy can lose effectiveness. I pray she just continues to focus on healing. I know she’d love to return but at what cost?? It’s just - she’s given her all for over 40 years. She can take all the time she needs. I really hope she remembers that and stays focused on health and healing. And just being with her family.

 

[Jeanette]

For me, after researching this disease a bit more and hearing about the triggers and the progressive nature etc, I now 💯 believe she plans to come back in some shape or form to basically say goodbye to us on her terms. I understand the whole Vegas thing but that might only be a limited show to fulfill contractual obligations, as we don’t know what the original deal was there…it may have only been for a limited time. I would think she would’ve been cautious in signing on for anything more, given the fact it was a new theatre, new partnership and of course due to her health issues. It may well have been an initial number of shows with the option for more, like a rolling contract idea. And although I don’t believe she’ll manage a full blown fair well world tour or anything, she may want to manage something over a longer stretch of time like via her mini tours of the past to say goodbye globally that way.

 

I actually hate that I’m typing “say goodbye” but I truly believe it would be best for her health and wellbeing in the long run and that’s what’s most paramount after all.

[Nmj]

For me, after researching this disease a bit more and hearing about the triggers and the progressive nature etc, I now 💯 believe she plans to come back in some shape or form to basically say goodbye to us on her terms. I understand the whole Vegas thing but that might only be a limited show to fulfill contractual obligations, as we don’t know what the original deal was there…it may have only been for a limited time. I would think she would’ve been cautious in signing on for anything more, given the fact it was a new theatre, new partnership and of course due to her health issues. It may well have been an initial number of shows with the option for more, like a rolling contract idea. And although I don’t believe she’ll manage a full blown fair well world tour or anything, she may want to manage something over a longer stretch of time like via her mini tours of the past to say goodbye globally that way.

 

I actually hate that I’m typing “say goodbye” but I truly believe it would be best for her health and wellbeing in the long run and that’s what’s most paramount after all.

 

I agree with going out on “her own terms”, but I don’t think that’s what she’s doing. I don’t think she’d be working so hard just to comeback to say “goodbye”. Hopefully her health reaches and stays a point where she’s able to do what she wants and live a healthy life. I think the days of Celine doing 70 shows a year are over…anything she does will be very limited compared to before.

[Peppercorn1991]

 

 

I agree with going out on “her own terms”, but I don’t think that’s what she’s doing. I don’t think she’d be working so hard just to comeback to say “goodbye”. Hopefully her health reaches and stays a point where she’s able to do what she wants and live a healthy life. I think the days of Celine doing 70 shows a year are over…anything she does will be very limited compared to before.

 

I don’t think it’s goodbye either. Irene said she thinks Celine is ready for other projects too other than performing. Music is Celine’s life and that’s not going to change.

 

Kev x

[Jeanette]

I hope for nothing more, than a continuation of her career for however many more years she can and in whichever way she can. Fingers crossed you’re right 🤞🏻 The “goodbye” thought just came to me last night and I suddenly thought that’s it, that’s what she’s doing but I do hope I’m wrong, providing her health allows her of course 👍🏻

[superstar85ca]

No matter what she chooses to do, I just hope we can see her and still have her actively in our lives somehow. Even If she can't sing or perform, I still really want to know what she is up to and know that she is at least happy.

[scielle]

I pray she just continues to focus on healing. I know she’d love to return but at what cost?? It’s just - she’s given her all for over 40 years. She can take all the time she needs. I really hope she remembers that and stays focused on health and healing. And just being with her family.

Sure, but performing is part of her healing. She needs it. It feeds her and gives her joy and it’s pretty clear she doesn’t feel complete without it.

 

[joaofilho]

I read on a website that the crisis Celine had at the end of the documentary lasted 50 minutes, is that true?

[Nmj]

I read on a website that the crisis Celine had at the end of the documentary lasted 50 minutes, is that true?

 

Yes. Irene said it as well. Said she shortened it to 10 minutes.

[scielle]

I read on a website that the crisis Celine had at the end of the documentary lasted 50 minutes, is that true?

 

Yes, Irene talked about it in numerous interviews.

[Nmj]

Dr Piquet and the 2 million dollar donation.

[scielle]

Dr Piquet and the 2 million dollar donation.

https://youtube.com/watch?v=c0ffZrBzihM&si=fQ8MI3ZogWLlN0p7

 

The text that accompanied this story several days ago (see my post here) had a few more encouraging quotes from Dr. Piquet. Pretty much everything she has said so far, and especially in the Yahoo UK interview, points to Celine making really good progress.

Also, I see CBCI is now posting Dr. Nash's interview as well (on FB and actual video interview on TikTok).

I really do feel like Celine probably saw him at some point as well, while in Colorado, but either decided against or was advised against a HSCT at this point.

Edited June 29, 2024 at 02:32 PM by scielle

[mirage]

Sure, but performing is part of her healing. She needs it. It feeds her and gives her joy and its pretty clear she doesnt feel complete without it.

Oh yes she definitely wants to get back. I've also read from patients that treatments work for a couple of years, but since it's a progressive disease, sooner or later they notice that symptoms are getting back more, or worse.

 

So as happy I am to see her out and about, and hear her say that she wants to get back on stage and is working on that.

I still feel a bit skeptical about it, and maybe worried knowing that (for now) there isn't a cure. And we are all on a high the last weeks, but it will be different definitely. And also maybe temporarily.

 

Yes. Irene said it as well. Said she shortened it to 10 minutes.

Pfff imagine the pain she goes through all that time.

It's insane how much your body can handle.

 

Verstuurd vanaf mijn SM-F721B met Tapatalk

 

 

[scielle]

International SPS patient panel discussion in reaction to the doc:

 

Also, a podcast conversation with another SPS patient advocate (pre doc release, but she talks about Celine at about 35min in):

 

Edited June 29, 2024 at 11:09 PM by scielle

[Holborn]

Oh yes she definitely wants to get back. I've also read from patients that treatments work for a couple of years, but since it's a progressive disease, sooner or later they notice that symptoms are getting back more, or worse.

 

So as happy I am to see her out and about, and hear her say that she wants to get back on stage and is working on that.

I still feel a bit skeptical about it, and maybe worried knowing that (for now) there isn't a cure. And we are all on a high the last weeks, but it will be different definitely. And also maybe temporarily.

 

 

I get that and there are moments that I share the same thoughts but then again, are we going to spend the rest of our days worrying about when the treatments will stop working?

Clearly something is working now and it might keep working for many years to come or it might stop working next month. The thing is that Celine has access to the best doctors and treatments out there, access that none of those patients have. We don't know what her exact treatments are and how she is combining them, we also don't know if she is getting experimental treatments on the side. Even if she's indeed getting more treatments per month than the rest of the patients, we don't know if that's something bad (that her SPS has progressed more or that some drugs aren't as efficient anymore for example), or if it's the right approach. It might be that she simply has the money to receive this type of therapies.

I'm trusting her doctor when she says that Celine has improved a lot and that SPS -like diabetes- can be controlled with the right medicines, and I'm staying hopeful. In the end we can't afford wasting our lives stressing over things that we can't control, we should allow ourselves to enjoy the good times and live in the now, because no matter how much we think about the bad and the worst scenario, we will never be truly prepared for it nor it will hurt any less.

[Céline RO]

Also, Céline herself seems optimistic with regard to their ability to counteract the progression of the disease by “tweaking” her treatment. It’s a time to be joyful and excited, not gloomy.

[drove all night]

I read on a website that the crisis Celine had at the end of the documentary lasted 50 minutes, is that true?

 

Yes, Irene Taylor mentioned it in her interview with "Variety": https://variety.com/2024/music/news/celine-dion-documentary-i-am-irene-taylor-director-interview-1236048365/

[jpatdeleon09]

I have the feeling she will be ok and she will have her comeback.

 

And it's called Faith

[scielle]

Ugh.

FYI Music News, a Canadian trade journal, says this (as of mid-March):

 

"Diagnosed with stiff-person syndrome several months ago and posting to Instagram that she needed to cancel the rest of her world tour due to the rare neurological condition that causes muscle spasms, Celine Dion is said to be winding down her day-to-day business operations and laying off staff. This follows a 40-year career in the international spotlight. While a difficult syndrome to overcome, there is hope for a recovery and a comeback. For one, this column wishes her the very best on this painful journey."

 

https://www.fyimusic...n-march-16-2023

 

This is the same publication which was first to confirm that Dave Platel took over as manager, back in early 2018. They definitely have their ear to the ground...

 

I now have it on good authority (a primary source involved) that this did indeed happen, Montreal office is closed, and people who had been employed there for years have been let go. (So who's going to archive all her stuff now?!)

Also confirmed: Dave is fully out of the picture.

Not sure about Denis, I imagine he'll still be her sound guy when she's back but I suspect he's no longer a "co-manager". She now has a "fully Las Vegas based" team (and I imagine a significantly slimmed down one).

Looking forward to what John and Joyce have in store.

Edited July 2, 2024 at 11:44 AM by scielle

[Critiaslux]

 

 

I now have it on good authority (a primary source involved) that this did indeed happen, Montreal office is closed, and people who had been employed there for years have been let go. (So who's going to archive all her stuff now?!)

Also confirmed: Dave is fully out of the picture.

Not sure about Denis, I imagine he'll still be her sound guy when she's back but I suspect he's no longer a "co-manager". She now has a "fully Las Vegas based" team (and I imagine a significantly slimmed down one).

Looking forward to what John and Joyce have in store.

 

I guess that in early 2023 it was making sense as her health situation was still uncertain (whether new treatments applied after the diagnosis would work).

 

And that could explain the radio silence on her social media ? I suppose that even if it was run by Sony music, without input from her management team, there was no clear direction.

[Nmj]

What do you know Celine’s team finally announced the donation from the Celine Dion foundation For SPS. And link to donate as well.

 

https://www.facebook.com/share/p/iDWd9ygnXUCnwTGE/?mibextid=WUal2a

 

Javascript is not enabled OR refresh the page to view

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Edited July 2, 2024 at 02:04 PM by Nmj

[tshlw]

I now have it on good authority (a primary source involved) that this did indeed happen, Montreal office is closed, and people who had been employed there for years have been let go. (So who's going to archive all her stuff now?!)

Also confirmed: Dave is fully out of the picture.

Not sure about Denis, I imagine he'll still be her sound guy when she's back but I suspect he's no longer a "co-manager". She now has a "fully Las Vegas based" team (and I imagine a significantly slimmed down one).

Looking forward to what John and Joyce have in store.

 

Well she could still have someone to archive things as not as much now as before and with the digital age sure much easier to do that, maybe get RC to do it lol. Hopefully things with Dave were amicable since worked together for so long. Hard after so long to keep the same people so not totally surprising as someone might want to retire or do something new or as we know pass away.

 

When Irene mentioned people working with her for 30+ years not many of those left now. Denis if still around and Yves is there really anyone else?

 

What happened to Mia Dumont did she pass away or just retire?

[mirage]

 

 

 

I now have it on good authority (a primary source involved) that this did indeed happen, Montreal office is closed, and people who had been employed there for years have been let go. (So who's going to archive all her stuff now?!)

Also confirmed: Dave is fully out of the picture.

Not sure about Denis, I imagine he'll still be her sound guy when she's back but I suspect he's no longer a "co-manager". She now has a "fully Las Vegas based" team (and I imagine a significantly slimmed down one).

Looking forward to what John and Joyce have in store.

 

Wonder why Dave has left now.

What was his role before 'co-manager' ?

Maybe it just was the time now, she is in good hands with the other 2 is my guess.

 

Very curious to see who will be back with her when it's the time.

 

What was the function of the Montreal office? I can imagine that it's way easier to have it in Vegas these days.

 

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[takeachance]

What do you know Celine's team finally announced the donation from the Celine Dion foundation For SPS. And link to donate as well.

 

https://www.facebook...mibextid=WUal2a

 

Javascript is not enabled OR refresh the page to view

Click here to view the Tweet

 

This is amazing

[LukeD]

Also, Céline herself seems optimistic with regard to their ability to counteract the progression of the disease by “tweaking” her treatment. It’s a time to be joyful and excited, not gloomy.

Yes, I agree. Besides, in the documentary one memorable quote was that she always finds a plan B. I believe this is applicable to how she deals with SPS.

[scielle]

Doc feedback from the SPS community: https://patientworthy.com/2024/07/01/sps-advocates-respond-celine-dions-documentary/

 

Some excerpts:

 

“So when powerhouse singer Celine Dion announced the June 2024 release of a documentary following her experiences with stiff person syndrome (SPS), the SPS community was hopeful that it would spur conversation on the community’s needs. After all, story-sharing is powerful.

 

Yet the documentary became increasingly controversial. Released on June 25, 2024, “I Am: Celine Dion” is a love letter from Dion to her fans, thanking them as they follow along her journey. One compelling and frightening scene even shows Dion in the midst of a seizure.

 

But despite Dion’s mission to share her personal experience with this disease, the SPS community believes that parts of the documentary perpetuate harmful stereotypes or myths around SPS. As Angela Davis, an advocate who lives with stiff person syndrome, shares:

 

“Some of what we saw is a little discouraging. We’re most worried about how the documentary will impact people who are newly diagnosed because we want to make sure they are not doing damaging things to their bodies.”

Working alongside four other SPS patient advocates from around the world and five-time Emmy award-winning investigative journalist Kimberly Lohman Clapp, Angela is on a mission to fill the gaps from the documentary and set the record straight on SPS.”

[…]

Filling the Gaps in Dion’s Documentary

 

Celine Dion shared her SPS diagnosis in December 2022. Five months later, she canceled the remaining tours on her schedule to focus on her health. “I Am: Celine Dion” encompasses her experiences as she grapples with the life-changing diagnosis and works to get back on stage in front of her fans.

 

Prior to the documentary’s release, Dion spoke with broadcast journalist Hoda Kotb about stiff person syndrome; Angela and other advocates later participated in a panel discussion aimed to empower the media with more information on SPS. You can find the full panel discussion here.

 

Some of the issues present in the documentary, and in the conversations Dion was having, include a quote that says: “I either work hard like an athlete or I stay home like a recluse.” Says Angela, this either/or binary can be incredibly harmful:

 

“SPS is a progressive incurable disease. I’m losing the ability to walk. When Celine Dion talks about training like an athlete to overcome SPS, or that you can reverse symptoms through yoga and mindfulness, it’s difficult for the SPS community to hear. Many of us are too rigid to participate. I don’t know how she’s achieving it in this movie—clever editing, maybe—but if any one of us could lift our leg in the air like she showed, our foot and calf muscle would seize in excruciating, spasmodic pain. Neurologists actually don’t recommend working out with SPS because it can trigger a huge seizure.

 

Celine Dion also has an entire host of doctors and specialists who come to her. She has a completely different level of care than others with SPS. Most of us can’t even get our doctors to listen! There’s fear in the SPS community that, through this documentary, SPS will be misrepresented, and viewers will think, ‘Oh, you can bounce back from SPS.’ We realize that she’s trying to make a comeback, but this idea of physical capability is just not true. How can she say that she wants to give the SPS community hope when talking about things that are dangerous to do, or not being honest to the full breadth of patient experiences?”

 

As the patient advocates share in the second portion of their patient panel, the documentary also fails to discuss the need for increased research (and funding) around SPS. Neurologists have recently shared surprise over how fast SPS can progress. The SPS community would love to see deeper dives into why this occurs and how to increase mobility and decrease body-wide rigidity. Says Angela:

 

“It would be great to have the ability to move better and to get some semblance of life back. Working, going out, having relationships—SPS makes these all more difficult. By understanding the underlying mechanisms of this disease and finding ways to address it, we can improve quality-of-life.”

Another research focus that the SPS community feels is important: identifying more effective, targeted treatment options. But again, the documentary does not really bring up treatments, the push for treatments, or the funding needed to advance treatments in a clinical setting. Angela explains:

 

“Johns Hopkins Stiff Person Syndrome Center is the only SPS research center in the world and is looking into possible treatment options. If you want to contribute to research, donating to Johns Hopkins is the way to go. But treatment was not brought up in Celine’s documentary. How can you talk about reversing symptoms or giving people hope without talking about research? It takes so much money to fund research that sometimes it feels like contributing is a drop in a bucket. But we’re just trying to encourage people to keep helping.”

 

Celine Dion’s documentary gives an insider look into her life, her goals for her musical career, and the challenges of living with SPS. Yet patient advocates reinforce that more is needed for SPS awareness than this documentary.“

Edited July 2, 2024 at 10:03 PM by scielle