2110 replies to this topic

[blueangel92]

The latest video of her singing X-mas makes me shed tears...

https://youtube.com/...Y?feature=share

Edited by blueangel92, 12 December 2022 - 07:18 AM.

[LeChauffeur100]

Overjoyed, on 11 December 2022 - 09:42 AM, said:

I feel the same. Last night i was hearing the Courage album, and so many songs has a new vision in lyrics now. Specially I was touched by "I Will Be Stronger" (especially that "it's not the end"), "Perfect Goodbye", "Courage", "Say Yes"...
And gives me some hope tunes like "The Hard Way" or even
"Soul"...

La diva is also one of those. I know it's about the life of misery of Maria Callas but some of the lyrics hit in a different way now.

[Bruno Portugal]

Celine always mentioned the enormous admiration and how much she identified with Maria Callas. Today, the parallelism shocks me. The heartbreak of love took everything away from La Diva. She died at the age of 53, voiceless and in deep depression. Celine deserves better luck and I hope that everything goes as smoothly as possible, without pressure and if there are no more tours that at least we have some new studio albums.
As I read somewhere... she didn't deserve this desease.

[scielle]

I just hope that in her determination to get back to the stage she doesn’t overdo it and end up over-medicating. We know how that worked out for Prince & MJ and others.

Here’s another interview with a neurologist, from CBC radio. Nothing really new and he doesn’t really speak about prognosis/ treatment success, but he has seen about a dozen cases: https://www.cbc.ca/l...er-stiff-person
And another one here: https://www.iheartra...that-1.18911337

Edited by scielle, 12 December 2022 - 05:36 PM.

[Loup_garou]

Bruno Portugal, on 12 December 2022 - 04:14 PM, said:

Celine always mentioned the enormous admiration and how much she identified with Maria Callas. Today, the parallelism shocks me. The heartbreak of love took everything away from La Diva. She died at the age of 53, voiceless and in deep depression. Celine deserves better luck and I hope that everything goes as smoothly as possible, without pressure and if there are no more tours that at least we have some new studio albums.
As I read somewhere... she didn't deserve this desease.

Not only that but I've read that part of her decline was due to dermatomyositis also a a rare disease that causes muscle weakness, there's this book by Lyndsy Spence "Cast a Diva: The Hidden Life of Maria Callas" released last year. The author states “I tracked down the neurologist who treated her before her death. Callas suffered from a neuromuscular disorder whose symptoms began in the 1950s, but she was dismissed by doctors as ‘crazy.’ It also explains the loss of her singing voice, which cut her career short,”

Fortunately Celine has been diagnosed, for all we know has a great support system and none of the turmoil surrounding Callas life

She's a fighter, and I'm sure she will get through this

[AdrienneM]

Seeing stuff like this pop up in my YouTube recommended really does give me hope

[scielle]

Oh that's interesting, I haven't come across that as a possible treatment.
Other than this, the most invasive seems to be stem cell transplants, but studies have been few and results varying (the latest and I think largest study done only covered 23 patients, and ~30% didn't see any improvement and >50% had symptoms return after 3.5 years...Plus it's dangerous, you have to wipe out the entire immune system with chemo and basically rebuild it from scratch.)

Some more neurologists, from Quebecois TV, below. There are, like, 6 people in all of Quebec with SPS. They're all about to become famous! (One was profiled on Telejournal a few days ago, though I don't think it's online anymore.)

https://www.tvanouve...r-scene-un-jour
https://www.tvanouve...e-la-neurologie
https://www.tvanouve...-ses-spectacles
https://www.tvanouve...-souffre-celine

Edited by scielle, 12 December 2022 - 07:39 PM.

[Nmj]

AdrienneM, on 12 December 2022 - 06:36 PM, said:

Seeing stuff like this pop up in my YouTube recommended really does give me hope

I have faith because Celine’s money will help her open doors to any treatment available. I love hearing the positive stories.

[Angel2006]

I keep thinking, I wonder if Celine's car accident as a young girl could have caused this disease and it was just festering and waiting for something to set it off ever since?
I remember reading once that Celine's spine was slightly bent from that accident and it caused her to have arthritis in her spine all her life, plus she suffered a significant brain trauma from that accident, where she came very close to death. This disease is brain related right, so a brain trauma as a kid being connected to this makes sense to me. It's the first thing I thought of and keep coming back to anyways.

In the 90's interview with Julie Snyder where Celine talks about how she started doing stretches and working out to help alleviate lower back pain and how it didn't help, so she stopped and said that she saw a specialist back then who told her that her muscles in the back of her thighs were too short compared to the length of her thighs and were pulling on her lower back. I looked up causes for muscles in the back of the thighs being too short compared to the length of the thighs after seeing that 90's interview a few years back and I remember reading that a possible cause could be an early childhood trauma to the body.

I think many things could be connected to that early accident and it's finally coming back to bite her now unfortunately. I am not a doctor, so please take everything I say with a grain of salt, but this is the only thing making sense out of all this. It's so unimaginably hard to believe. Celine has always been so full of energy, active, fit, extremely coordinated and flexible, so this truly makes zero sense to me. There are so many impressive things that Celine has done with her body onstage and off over the years that have blown me away and made me wonder how she could do such moves, so the though of going from that to Stiff Person's Syndrome is more than a shock. This news has SHOOOOOOK me to my very core. I have been in a fog ever since this news has been announced. I can't even begin to imagine what Celine is going through, both physically and emotionally right now. I feel so very deeply sad for. It's all just so depressing and very, very hard to believe.

I am just hoping and praying that maybe Celine has a certain form of this disease that is not anywhere near as serious as other forms/strains. I don't know how this works? I saw one interview on this forum with a women who said that Celine has a different type of Stiff Peron's syndrome then her, so maybe it's possible that Celine has a different version of this, where it's possible to live a normal life with proper treatment and determination to get better. I am hoping a praying that her doctors find a perfect magic concoction that works for her and allows her to do everything or mostly everything she could before somehow. I know that probably isn't possible, but it's the only thing keeping me going right now.

I keep thinking about Celine's determination and strength to push through things. Rene said before that Celine could have a fever of 102 and nobody would have a clue, because she just pushes through and doesn't let anyone know her pain or if she's sick. If Celine has been able to push through for many years with these spasms and lord knows what other health issues without anyone being able to tell, then maybe she can carry on in her career with this disease and still live a good quality life? I am hoping and praying so hard, not just because I want to keep hearing Celine sing, but because I want her to live a complete full and happy life. The thought of Celine being in this kind of agony is too cruel to bare.   Sending my prayers to Celine and her family and wishing Celine the very best outcome possible.

[blueangel92]

https://youtube.com/...Q?feature=share

Edited by blueangel92, 12 December 2022 - 09:21 PM.

[scielle]

This is quite informative, from an SPS patient who’s also a neurology resident - https://www.wistv.co...erson-syndrome/

[Bmlynch94]

Hi all! If you’re able to, please consider donating to the Stiff Person Syndrome Research Foundation. Following Celine’s heartbreaking announcement, I’ve decided to donate $10 monthly to the organization on behalf of her. I think this could be a great way for us to show the SPS community & Celine that we support them and that we’re fighting beside them towards a cure. This syndrome, unfortunately, is so rare that it doesn’t get the attention or funding that it so sorely needs.

https://stiffperson.org/donate/

** Celine, we love you so much. We’re here for you all the way. God Bless.

- Brock L.

Edited by Bmlynch94, 12 December 2022 - 10:23 PM.

[scielle]

Céline has raised so much awareness about this disease with her message. So many media outlets covering it now.
The top Google searches on Dec 8th were: 1. Brazil vs Croatia, 2. Brittney Griner, 3. Stiff person syndrome

https://trends.googl...es/daily?geo=US

That’s real impact. Some SPS patients have spoken about their frustration talking to doctors, even neurologists, who know nothing about it, about doctors actually Googling symptoms with them right there in the exam room.
Now those doctors will know.

[Nmj]

scielle, on 12 December 2022 - 10:19 PM, said:

Céline has raised so much awareness about this disease with her message. So many media outlets covering it now.
The top Google searches on Dec 8th were: 1. Brazil vs Croatia, 2. Brittney Griner, 3. Stiff person syndrome

https://trends.googl...es/daily?geo=US

That’s real impact. Some SPS patients have spoken about their frustration talking to doctors, even neurologists, who know nothing about it, about doctors actually Googling symptoms with them right there in the exam room.
Now those doctors will know.

Even in her darkest hour Celine is making so many people feel seen, she has now become the spokesperson of this disorder, and I know no matter what’s in store for Celine the medical world and SPS will benefit knowledge and breakthroughs because of this terrible news.

Not to be corny person who quotes Celine all the time but one of her most used lines has never had more meaning….

“Life imposes things on you that you cannot control, sickness… but you still have a choice of how you live through this.”

[LukeD]

Most of us are in this stage of trying to make sense of what happened. And that is OK. We are trying to rationalize the situation and this is part of human nature.

I personally attribute everything to her emotional stress since 2016, and the neck-cracking pace of doing show after show, whilst showing the world she was OK. IMO she did not have enough space to engage with her vulnerability, take adequate time to mourn and slowly deal with the trauma. That's what I am saying to myself when I try to find an explanation so that I address the chaos in my head and heart about all of this.

I am then thinking that she loves life, and she is a fighter, which means that she will find a functional solution around the issue depending on what it affects.

If it is the vocal cords and light/sound sensitivity, this will mean no more concerts but she might be able to still record music and therefore do what she loves.

If it is her ability to walk only, she might be doing shows, but take a different approach to them. Any type of aid, she can have it on stage - there are singers dealing with physical disability that manage to be on stage and deliver. She can therefore be happy about doing what she loves the most.

Do not get me wrong, I am not writing these possibilities from a fan perspective as much as I do from a Celine perspective. Because I want her to be happy so I am trying to find some silver lining.

Edited by LukeD, 13 December 2022 - 01:19 AM.

[scielle]

Some commentary on the news from Marc Dupre here: https://showbizz.net...-de-celine-dion
He doesn’t really say much and I’m not clear from this whether he knew or not. He does say they don’t see each other as much now that Rene is gone. Says Céline has her life in Vegas and it was Rene who brought everyone together.

[scielle]

From a David Foster interview - https://warm1069.com...nd-celine-dion/

“Now that we know Céline is suffering from a rare neurological disorder, Foster says of his longtime friend, “What I understand about this disease [is] it can be stress-related…and so I’m sure she’s tired.

“And also, still trying to navigate the world without her husband, it’s probably been very difficult for her. In fact, know it has been…[so] hopefully, she’ll find some way to get through it.”

[Nmj]

scielle, on 13 December 2022 - 05:58 AM, said:

Some commentary on the news from Marc Dupre here: https://showbizz.net...-de-celine-dion
He doesn’t really say much and I’m not clear from this whether he knew or not. He does say they don’t see each other as much now that Rene is gone. Says Céline has her life in Vegas and it was Rene who brought everyone together.

As expected seems there’s been more distance since Rene passed. However, it seems like Celine has for the most part self isolated after Rene passed away as well. I hope she has a support system around her other than her children and hired help ( housekeepers, doctors, etc.)

I hope she has great friends and family members coming through and reaching out.

[scielle]

Nmj, on 13 December 2022 - 08:11 AM, said:

As expected seems there’s been more distance since Rene passed. However, it seems like Celine has for the most part self isolated after Rene passed away as well. I hope she has a support system around her other than her children and hired help ( housekeepers, doctors, etc.)

I hope she has great friends and family members coming through and reaching out.

Yeah it’s a small bubble. Was back in 2008/09 when Denise Bombardier observed it, even more so now.
Must be lonely at the top. On the one hand, Céline has exceptional EQ and can connect with all sorts of people, in a real way, very quickly. But on the other I’m sure she’s wary of being taken advantage of so doesn’t let many people too close.

[Allysadreams]

Nmj, on 13 December 2022 - 08:11 AM, said:

As expected seems there’s been more distance since Rene passed. However, it seems like Celine has for the most part self isolated after Rene passed away as well. I hope she has a support system around her other than her children and hired help ( housekeepers, doctors, etc.)

I hope she has great friends and family members coming through and reaching out.

Everybody has self isolated the past few years thanks to a questionable decision by supposed democratic governments decision that people couldn't use their common sense or had no immune system.  That could have caused her stress as she is an energetic extraverted personality type and she couldn't do what makes her happy for a few years, it can make people sick.  I personally saw it with lots of people, albeit more so with elderly people who were healthy and young hearted and restrictions and lockdowns just killed their spirit and then their health was affected...Just my thoughts on it.

Edited by Allysadreams, 13 December 2022 - 09:30 AM.

[Peppercorn1991]

Nice to hear David fosters view on the situation.

Kev x

[Angel2006]

Bmlynch94, on 12 December 2022 - 10:16 PM, said:

Hi all! If you're able to, please consider donating to the Stiff Person Syndrome Research Foundation. Following Celine's heartbreaking announcement, I've decided to donate $10 monthly to the organization on behalf of her. I think this could be a great way for us to show the SPS community & Celine that we support them and that we're fighting beside them towards a cure. This syndrome, unfortunately, is so rare that it doesn't get the attention or funding that it so sorely needs.

https://stiffperson.org/donate/

** Celine, we love you so much. We're here for you all the way. God Bless.

- Brock L.

Is there a website to donate in Canada?

[scielle]

Peppercorn1991, on 13 December 2022 - 11:31 AM, said:

Nice to hear David fosters view on the situation.

Kev x

I was thrown off how reductive and dismissive it sounded. Almost like he's saying "oh, she's tired and dealing with grief". Doesn't sound like he appreciates this is a serious, lifelong neurological disorder that renders something like 65% of sufferers unable to live independently, disabled.

I'm trying to be positive, hoping Celine's case is relatively mild, caught early, and that she responds well to treatments. Hoping that so many of the patient stories and profiles I've seen online (which for the most part are really dire) are the serious cases, and that most dealing with this disease  are not as severely affected. It's hard to judge whether those more public stories are representative of the larger SPS population.

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[Nmj]

scielle, on 13 December 2022 - 01:04 PM, said:

I was thrown off how reductive and dismissive it sounded. Almost like he's saying "oh, she's tired and dealing with grief". Doesn't sound like he appreciates this is a serious, lifelong neurological disorder that renders something like 65% of sufferers unable to live independently, disabled.

I'm trying to be positive, hoping Celine's case is relatively mild, caught early, and that she responds well to treatments. Hoping that so many of the patient stories and profiles I've seen online (which for the most part are really dire) are the serious cases, and that most dealing with this disease  are not as severely affected. It's hard to judge whether those more public stories are representative of the larger SPS population.

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That’s what I took from Davids statement, It seemed very dismissive…

[Davey84]

scielle, on 13 December 2022 - 01:04 PM, said:

I was thrown off how reductive and dismissive it sounded. Almost like he's saying "oh, she's tired and dealing with grief". Doesn't sound like he appreciates this is a serious, lifelong neurological disorder that renders something like 65% of sufferers unable to live independently, disabled.

Well it's not like he left his fourth wife when she got chronically ill, not really sure what she had exactly...... oh wait.

Verstuurd vanaf mijn SM-G781B met Tapatalk

[LukeD]

I found the statement dismissive as well. I think he is talented and a massive contribution to Celine's career, but that's about it. He has always given me the impression of the stereotypical womanizer who is emotionally immature and selfish. He comes off as lacking empathy here as well. Well, that's his problem, not Celine's. 😌

Edited by LukeD, 13 December 2022 - 02:15 PM.

[Nmj]

Even if Celine can get her physical symptoms in order, I wonder if noise being a trigger would be what has to rule out future music performances.

[Dancing_Queen]

I keep wondering about all these instances where Céline's health failed her in the last couple of years. The weight loss, the ear condition, the time she went through her back (the time that she performed with the back-brace)...Even her illness around the time of the Courage release (likely a time of extra stress for her).
They all could've been signs of her condition. It's probably no coincidence that the new Vegas show was another trigger, especially after all the downtime she had. I really wonder what would've happened without Covid...Would she have soldiered on for a couple years longer? Or would she have collapsed mid tour?

[scielle]

Dancing_Queen, on 13 December 2022 - 03:48 PM, said:

I keep wondering about all these instances where Céline's health failed her in the last couple of years. The weight loss, the ear condition, the time she went through her back (the time that she performed with the back-brace)...Even her illness around the time of the Courage release (likely a time of extra stress for her).
They all could've been signs of her condition. It's probably no coincidence that the new Vegas show was another trigger, especially after all the downtime she had. I really wonder what would've happened without Covid...Would she have soldiered on for a couple years longer? Or would she have collapsed mid tour?

Well, she seems to have had symptoms for years. The time you mention when she wore a back brace, yes, but also as far back as 2008. (I’m thinking of the Gwen Korovin scene in TTEOTW).  She talked to Denise Bombardier back then too about having Globus Syndrome (possibly a misdiagnosis/ early sign of this). So perhaps this has been percolating for years, and we only saw snippets of it, but now it’s become severe and impossible to ignore.
From what I’ve read, some people have worsening and misdiagnosed symptoms for 15 years before they finally get diagnosed. It’s why I’m worried her case might be more advanced than she’s letting on, because she’s been working through pain for years (without us knowing, mostly).

Anyway, not a doctor, merely speculating.

[scielle]

Here's another informative article, quoting a neurologist from the Ottawa hospital that pioneered that stem cell transplant treatment (and the patient in question is also quoted). Since then, they say these treatments have had a 50-50 success rate.

https://ottawacitize...re-is-treatment

Edited by scielle, 13 December 2022 - 05:18 PM.