Céline has Stiff-Person Syndrome

[kaye2023]

^ That's a good piece, thanks for sharing. Davis's POV is definitely important to be heard, especially if she and the others in agreement with her assessment have more advanced stages of SPS. It's a but interesting how perception of the docu can be so different--to some it seems she's bouncing back (like Davis mentioned), to others they read it as she is close to dying any day now (I have seen so may random comments of being moved by the docu and lamenting to let her do what she wants/cheering her on "because she's a dying lady!")

 

Though I understand what she's saying regarding it lacked more details on SPS per se (her treatment plan, research, discussion of the disease, etc), as much as I would LOVE to know about these as well, I understand the docu is more about Céline's early journey with SPS, not really an orientation docu about the disease. How her Life is changing with a newly-diagnosed disease. Adding heavily medical and scientific info overload wouldn't be palatable to most of the general audience. I honestly feel Céline's docu is a good introduction to the disease.

 

Other docus to "fill in the gaps" would certainly be important and useful, not to "correct" Céline's docu, but to expand and delve deeper into the disease proper

 

“I either work hard like an athlete or I stay home like a recluse.” Says Angela, this either/or binary can be incredibly harmful:

 

I understand what she means, but at the same time, I also understand Céline's case is relatively early in terms of disease stage and when it was diagnosed. I give her grace and leeway because 1) she's only speaking and (for now) can only speak about her own experience; 2) she could be in a state of mental shock and denial herself over such a devastating diagnosis/prognosis so this comeback positive bluster and positive affirmations to recover could be her coping; 3) perhaps her case isn't as advanced as others' (or not as bad it comes across in the docu since we only see parts of it) so those words feel true to her, or she is undertaking a significantly different experimental treatment than other patients and is genuinely making remarked progress, and if it proves to work (better), will only benefit other patients.

 

Neurologists actually don’t recommend working out with SPS because it can trigger a huge seizure.

I have been thinking about this myself, along with other atypical patient stuff like she's not triggered by sound/light as other patients, as seen in the events she's attended post-diagnosis, including her insistence on wearing her gd high-heeled shoes. I admit there are even times I hope/think/wonder if Céline's case isn't SPS but something else that has symptoms manifesting like SPS. The thing with SPS is diagnosis (for now) is a case of "most likely" based on a list of symptoms that's why it's often misdiagnosed. It's not definitive, like cancer where you see a cell mass and can absolutely say it's brain tumor. Anyway, just random thoughts in my head.

 

If I had Céline's money, it would be interesting for me to fund 3-5 other qualified volunteer patients to undergo the exact same treatments as I am to see how it affects them. The findings would help me just as much.

[Ajax]

Well I find this article cringy to read. We already know it was difficult to be vocable when being a celebrity especially when it concern health but:

 

It is not a documentary on SPS. This is a doc about her journey with SPS. Still it leads with a chair and fundraising of 2 millions for research and treatment. Exactly what she seems to dismiss. Did she forget or just avoid mentioning it?

There is nothing worse than feeling bad and expecting the other people to feel the same. Except that yes Celine is very rich and has a better access to treatment, this is her way to experience symptoms. This lady somehow question her disease and symptoms.

 

I think there is a cognitive bias here. We hear about the worst case and people with the worst scenario already diagnosed, are vocable. When you start reading a bit more there are few consensus and a diversity of symptoms and stages. What Dr Piquet underlines also when she says that it is not one on 1 million but rather 100 000 is that way more people than we know are dealing with the disease in their everyday life without being diagnosed and then with a diversity of symptoms and severity.

 

So yeah sorry for the lack of empathy but this paper felt out of the place, with a bad argumentation, and false information.

 

[mirage]

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

 

 

[mirage]

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

 

 

[ryba]

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

maybe she suffers from a lighter version of the disease. However, that attack in the docu did seemed very heavy. Edited July 3, 2024 at 07:34 AM by ryba

[anewdayhascome]

It's another rather jealous doctor (after the one in Montepellier who demanded directly 10 millions from Celine) who didn't get the money which went to another centre. If a disease is so rare how can you dismiss another fellow doctor's contribution to its treatment. Dr Piquet might not be the best doctor in the world ever but she is THE one for Celine. And it's the same for everybody, we praise a doctor who helps us and complain about the one who doesn't and yet for another person it might be the other way round

[Jeanette]

My hope deep down is that she’s also been misdiagnosed and her symptoms were a multitude of years of overdoing things and stress (emotional, physical and mental). I actually believe that she was more than likely going through a complete emotional break in the years after Rene’s passing, which even she wasn’t admitting to herself. However, with these diseases, the symptoms and triggers can be so varied and each individual’s case can differ, I would think. Therefore, without ever being able to get a 100% definitive diagnosis through diagnostic testing, an assumption is more or less concluded given the symptoms and facts presented from each individual case.

 

I myself was diagnosed over 10 years ago with fibromyalgia when I was experiencing general bodily exhaustion, muscle aches daily and many other symptoms that pinpointed to that syndrome but in all honesty I don’t believe I ever had it at all. It was more likely stress and anxiety manifesting itself in many ways physically as I had been through a lot of loss during a 5 year period a few years prior.

 

Anyway, going back to SPS patients, as they say, they don’t have the resources available to them unfortunately as Celine has and don’t have access to the trials in treatment plans for their own individual case. A syndrome is named so as it’s a catalogue of symptoms and not every symptom presents in each and every individual which is obviously why these syndromes are still so difficult to diagnose.

 

Celine herself said it was all about finding a balance in treatments and PT that works for the individual and thank god she seems to have found that balance for her, for now.

[No1IrishFan]

I haven’t really commented before on the SPS community feedback on Celine and the doc.

 

However.

 

It has to be frustrating for an SPS patient who is suffering badly with the condition to see Celine do those things in the doc. No one had really heard of SPS before this so people will naturally recall Celine’s experiences and some might assume all SPS patients can do what she does. I totally understand why someone who has it might be annoyed, it’s so new and people don’t know a lot about it. We are very much creatures of our surroundings and we go by the things we have seen and heard.

 

On the other hand, I can’t think of a single disease/ailment where there is a list of side effects which every person suffering from them experiences. Even something as basic as a cold or a flu impacts people in different ways. I might have a cough and a blocked nose, someone else might have neither of them but have a headache and a sore throat. It’s not as simple as these are the X number of side effects so every person has to feel them. It doesn’t work like that.

 

The doc is about Celine and her personal experiences. I feel the doc (and the many interviews with the doctors etc) have done a great job of explaining SPS and what the more common side effects are. Those however are not the side effects Celine is feeling right now.

 

I don’t think that SPS patient (Davis) is being fair to Celine. Yes it’s frustrating in that the one person raising awareness isn’t the exact same as you but the doc is about her and how she’s finding it. Attacking her because it’s misleading is just wrong.

 

 

[jpatdeleon09]

I agree that this documentary is about her journey with SPS. It has only been known by many because of Celine. The documentary is sort of an introduction to the disease.

 

After that they can now make a documentary that focuses mainly on the disease itself.

 

I agree that Davis is attacking Celine is not fair just because she wanted the documentary to focus mainly on the disease. Then, the title should not be called anymore as “I Am Celine Dion”.

 

Celine Dion’s documentary gives an insider look into her life, her goals for her musical career, and the challenges of living with SPS. As what she showed in the documentary - Exactly!

 

Someone should explain clearly to Davis

Edited July 3, 2024 at 08:29 AM by jpatdeleon09

[Zofia]

As short as possible:

 

- SPS is a spectrum of diseases and exhibits several phenotypes, but is not diagnosed on the basis of symptoms (where did you get that idea?). There are two diagnostic tests: for the presence of pathological antibodies in the blood (mainly anti-GAD 65, often many others - against amphiphysin, against glycine receptors, etc.) and EMG, electromyography (a study of electrical activity in the muscles, which in SPS patients shows constant excitation). Administering immunotherapy to a patient who has "only similar symptoms" would be an unacceptable medical error.

 

- No, there is no basis for claiming that Céline had an undeveloped or mild form of the disease - unless she herself is lying. If she had trouble walking and swallowing, if she had attacks of spasms throughout her body and not just certain parts of her muscles (full body flare up), if any of the attacks broke her ribs, then one can speak of an advanced disease and a severe course. She talks about susceptibility to triggers herself in interviews, so to some extent they affected her as well.

 

- If she had said: "I am in remission after taking therapy X," the matter would be clear to other patients. But her interviews show that it's only improvement, not remission, while she can be seen in the crowd in high heels. People who like her have the right to celebrate; people who are struggling with the disease have the right to ask how this is possible.

 

- A celebrity-patient with a rare disease has every right to talk about his/her experience, and will certainly play a big role in attracting public attention (note: "awareness" is unequivocally positive for the development of medicine, but to diagnosed patients it has different effects, positive and not). However, due to his/her unique situation, is he/she suitable as a spokesperson for the patient community?

[kaye2023]

- From Johns Hopkins: "Stiff person syndrome is very rare and complex, and its many symptoms can be caused by other, more common conditions. It may take time and several tests to diagnose SPS. If your doctor suspects that your symptoms are due to stiff person syndrome, he or she will review your detailed medical history and perform a physical exam followed by a diagnostic workup. A doctor may make a diagnosis of SPS when there is no better explanation for the symptoms and exam findings."

 

- From stiffpersonorg.com: "No One Single Test for SPS: A diagnosis of Stiff Person Syndrome (SPS) depends on multiple factors. There is no one single lab test or study that determines the diagnosis. (or two as you mention) A detailed medical history, physical exam, blood tests, and other lab tests can support the diagnosis."

 

- Anti GAD antibodies isn't 100% reliable. There are patients with very high anti GAD antibodies (majority for classic cases iirc), there are SPS patients with low/normal levels. Likewise, there are other diseases of which these anti-bodies are indicative of as well.

 

- EMG is not an exclusive diagnostic tool nor does it give results uniquely indicative and definitively of SPS. It can be indicative of "a wide variety of neuromuscular diseases, motor problems, nerve injuries, or degenerative conditions, such as (didn't include long list of diseases, easily googleable):

 

 

No, there is no basis for claiming that Céline had an undeveloped or mild form of the disease

No one has claimed she has mild (or severe) form of SPS? We're just speculating, hoping and wishful thinking based on what's shared. None of us have seen her medical records to claim either way or claim anything, really. Heck, even when her doc says "she's improved" I'm even cautious about what 'improved' means. Improved from the totally destroyed state because of drug abuse weaning but still on course the disease progression, or improved based on her severity wrt cohorts, etc. It's a vague "relative to what" word.

 

However, due to his/her unique situation, is he/she suitable as a spokesperson for the patient community?

She's never claimed to be a rep for the patient community, nor applied to be one. Goodness, she's still adapting to the recent shocker of a diagnosis. She doesn't even have an association, unofficial or official, with the biggest SPS organized community. Instead of pulling her down for speaking about her case, the SPS community would do better by being constructive and LEVERAGING off her popularity. Doing their own org docus, getting her to speak for a portion, doing events and asking her to appear, etc.

 

People who like her have the right to celebrate; people who are struggling with the disease have the right to ask how this is possible.

I agree, it's a curious detail that's why I mentioned it, though it's less "right to ask" but more "would like to know if she's open to share." See? This is the leverage I'm talking about, SPS can even do a series of interviews with her alongside other patients, her docs, her PT, asking these things that puzzle them/us/me (lol). Her docu isn't the be-all and end-all of SPS docus, they should see it as the introduction that hooked the public's interest and they can capitalize on that.

 

I don't think badly of them (Davis et al), I only hope they see other ways Céline's name can also work for their advocacy/other patients. Maybe they will eventually and are still adjusting themselves to the sudden association of SPS with a celebrity of her caliber for now.

Edited July 3, 2024 at 11:14 AM by kaye2023

[Zofia]

- From Johns Hopkins: "Stiff person syndrome is very rare and complex, and its many symptoms can be caused by other, more common conditions. It may take time and several tests to diagnose SPS. If your doctor suspects that your symptoms are due to stiff person syndrome, he or she will review your detailed medical history and perform a physical exam followed by a diagnostic workup. A doctor may make a diagnosis of SPS when there is no better explanation for the symptoms and exam findings."

 

- From stiffpersonorg.com: "No One Single Test for SPS: A diagnosis of Stiff Person Syndrome (SPS) depends on multiple factors. There is no one single lab test or study that determines the diagnosis. (or two as you mention) A detailed medical history, physical exam, blood tests, and other lab tests can support the diagnosis."

 

- Anti GAD antibodies isn't 100% reliable. There are patients with very high anti GAD antibodies (majority for classic cases iirc), there are SPS patients with low/normal levels. Likewise, there are other diseases of which these anti-bodies are indicative of as well.

 

- EMG is not an exclusive diagnostic tool nor does it give results uniquely indicative and definitively of SPS. It can be indicative of "a wide variety of neuromuscular diseases, motor problems, nerve injuries, or degenerative conditions, such as (didn't include long list of diseases, easily googleable):

 

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.

 

No one has claimed she has mild (or severe) form of SPS?

 

Just follow the the discussion in the thread, even recent posts - speculation about a mild version of the disease recur regularly (and are understandable as wishful thinking). About the severe course can be said based on her own words - the reasons I cited above; simply not all SPS patients experience such severe symptoms.

 

She's never claimed to be a rep for the patient community, nor applied to be one.

 

“What’s my mission in life? Is my mission to be a singer? Is my mission to be a spokesperson for SPS? Is my mission to be a mother? Or is my mission to be all of the above?” https://www.vogue.co...ailer-interview

 

Once again: I don't require her to choose her words carefully; I'm not accusing her, nor, by the way, other patients (including those who believe that in their case, for the time being, she is doing more harm than help). Each of them speaks from the depths of their own experiences, and it would be good to listen to each of them. Un-ironically, I think that if she really doesn't want to treat this disease only as a private matter and an obstacle to her career (which she would be as entitled to do as anyone!), but wants to appear herself in public on the matter, she needs someone in management to address the issue and avoid information chaos. Speculation doesn't do anyone any good; not her and not the other patients.

 

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.

Edited July 3, 2024 at 12:24 PM by Zofia

[incognito]

Except that yes Celine is very rich and has a better access to treatment, this is her way to experience symptoms. This lady somehow question her disease and symptoms.

 

It’s a case of “Must be nice” disorder. If you’re wealthy, successful or both you’re going to be criticized on at least some level in everything you do. And you’re not able to express frustrations with your life or perceived shortcomings without it being twisted by others or dismissed.

 

 

[Critiaslux]

Who knew about SPS before 8 December 2022? 1 out 1 million person I suppose. Since then ? Millions around the world

Who knew how dreadful could be the effect of SPS before 25 June 2024? 1 out 1 million person I suppose. Since then ? Millions around the world

 

Thanks to the one scene that Celine explicitly asked Irene to leave as it is in the movie, millions are aware how painful and debilitating this rare disease can be.

 

There is a Foundation funding a research chair that will benefit all patients. Foundation that millions of followers through the different social media platforms are made aware of.

 

This is the beginning that nobody could have reasonably be dreaming of before. This is a first step of a relay race. Each one can take the baton.

Of course a single documentary cannot represent all the situations. Now there is a bigger platform that people have ever had to deep dive. This is not the end. It is a journey. The style of the article could definitely have been better.

 

There is a way to say "by the way, thanks for the docu and the exposure, and from there we would like to lift the veil further" and on the contrary how this article was drafted in a passive-aggressive fashion. Not constructive.

 

It reminded about what Celine said in the movie: she was afraid to go out so that people would question whether she was really ill...

Edited July 3, 2024 at 07:46 PM by Critiaslux

[scielle]

SPS Research Foundation has posted materials from their recent annual symposium, including presentations from top doctors in the field (one being Dr Amanda Piquet): https://www.stiffperson.org/2024-sps-symposium?fbclid=IwZXh0bgNhZW0CMTEAAR01z9byZ25nfbxvvM7qdnCXI2-agXKCbYZrhOMBA6tHhTTI5GG47sevUWc_aem_eL1lQ5O4ZO_fur4zqsm1eA Edited July 3, 2024 at 10:56 PM by scielle

[Nmj]

SPS Research Foundation has posted materials from their recent annual symposium, including presentations from top doctors in the field (one being Dr Amanda Piquet): https://www.stiffperson.org/2024-sps-symposium?fbclid=IwZXh0bgNhZW0CMTEAAR01z9byZ25nfbxvvM7qdnCXI2-agXKCbYZrhOMBA6tHhTTI5GG47sevUWc_aem_eL1lQ5O4ZO_fur4zqsm1eA

 

Interesting patient commentary of IACD.

https://www.instagram.com/reel/C8rgfjJun7U/?igsh=MTRwdXB2bmI3enNzMA==

Edited July 3, 2024 at 11:02 PM by Nmj

[LukeD]

I am smiling seeing how right I have been in my assessment of specific behaviours displayed in this thread.

 

It is incredible to witness such level of cognitive bias in the way in which words are (mis)interpreted. For example, Celine poses a range of QUESTIONS in relation to her identity and mission in life, and these QUESTIONS are taken as affirmative statements that somehow (?) solidify her identity as an SPS spokesperson.

 

In turn, since we established the basis that Celine IS an SPS spokeperson, we can begin assigning responsibility to her. She is to blame for things she might do or not do, things she might say or not say, and the main criterion applied is how fellow SPS patients feel about the things she did or did not do, said or did not say.

 

And, of course, confirmation bias comes handy - this choice to cherry pick information that supports one's own opinions and disregard evidence/facts pointing to the contrary. For one, I am happy with post #1964 that set the record straight and reminded us of the wonderful things achieved in such a short timeframe. And posts #1951 and #1961 that described the documentary for what it is - an introduction only to Celine's experience with SPS.

[scielle]

 

Interesting patient commentary of IACD.

https://www.instagram.com/reel/C8rgfjJun7U/?igsh=MTRwdXB2bmI3enNzMA==

Thanks. I actually followed her for a while earlier this year (or maybe late last year), when she was going through her HSCT. Interesting to see how she’s doing several months later.

Edited July 4, 2024 at 12:32 AM by scielle

[GoldenLeaf]

This is very informative and makes sense:

"Dr. Philip McMillan discusses the possibility of Celine Dion being a victim of spike autoimmunity, focusing on Stiff Person Syndrome symptoms and therapy."

 

www.youtube.com/watch?v=BNlba3AsfRk

Edited July 4, 2024 at 01:51 AM by GoldenLeaf

[CelinesDIVO5]

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.“

 

I can understand how some of the patients may feel that the documentary wasn’t the “informative research piece” to bring full awareness to all aspects of SPS and treatments for it…but laying it all on Celine’s shoulders and insinuate that she had this responsibility to everyone in the SPS community is also BS in my opinion. This was a documentary focused on Celine Dion and HER journey. It was never said that this was going to be a medical journal piece that explains everything about the disease. For anyone to read the press pieces beforehand and think that, I’m sorry but these were delusional thoughts to have.

 

What should be spoken about is regardless of how deep the specific information about SPS was in the film, people are talking about it now. The medical world is more aware of it now. And I love that Celine’s doctor is willing to be on camera and talk about it. There is more awareness regarding the disease, whether or not SPS patients think that Celine didn’t talk about it enough.

[CelinesDIVO5]

 

“What’s my mission in life? Is my mission to be a singer? Is my mission to be a spokesperson for SPS? Is my mission to be a mother? Or is my mission to be all of the above?” https://www.vogue.co...ailer-interview

 

Once again: I don't require her to choose her words carefully; I'm not accusing her, nor, by the way, other patients (including those who believe that in their case, for the time being, she is doing more harm than help). Each of them speaks from the depths of their own experiences, and it would be good to listen to each of them. Un-ironically, I think that if she really doesn't want to treat this disease only as a private matter and an obstacle to her career (which she would be as entitled to do as anyone!), but wants to appear herself in public on the matter, she needs someone in management to address the issue and avoid information chaos. Speculation doesn't do anyone any good; not her and not the other patients.

 

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.

 

This was a very clear quote from Celine. She was saying that she doesn’t know what’s in store for her future, and was simply giving examples to be positive and say that “sky’s the limit.” She didn’t definitively say “I AM NOW A SPOKESPERSON FOR SPS.” And for anyone to take that quote, and come out with this determination, needs to take a step back and re-evaluate what they just read.

[CelinesDIVO5]

I am smiling seeing how right I have been in my assessment of specific behaviours displayed in this thread.

 

It is incredible to witness such level of cognitive bias in the way in which words are (mis)interpreted. For example, Celine poses a range of QUESTIONS in relation to her identity and mission in life, and these QUESTIONS are taken as affirmative statements that somehow (?) solidify her identity as an SPS spokesperson.

 

In turn, since we established the basis that Celine IS an SPS spokeperson, we can begin assigning responsibility to her. She is to blame for things she might do or not do, things she might say or not say, and the main criterion applied is how fellow SPS patients feel about the things she did or did not do, said or did not say.

 

And, of course, confirmation bias comes handy - this choice to cherry pick information that supports one's own opinions and disregard evidence/facts pointing to the contrary. For one, I am happy with post #1964 that set the record straight and reminded us of the wonderful things achieved in such a short timeframe. And posts #1951 and #1961 that described the documentary for what it is - an introduction only to Celine's experience with SPS.

 

Agreed. I literally made my comments just before I read yours.

[Jeanette]

This is very informative and makes sense:

"Dr. Philip McMillan discusses the possibility of Celine Dion being a victim of spike autoimmunity, focusing on Stiff Person Syndrome symptoms and therapy."

 

www.youtube.com/watch?v=BNlba3AsfRk

 

Interesting and makes you think but is he correct in suggesting that Celine cut her final show of the Courage Tour short on March 12th in Newark, New Jersey due to cold symptoms? 🤔

[tshlw]

Interesting and makes you think but is he correct in suggesting that Celine cut her final show of the Courage Tour short on March 12th in Newark, New Jersey due to cold symptoms?

 

Her last show was March 8th 2020 and then the tour shut down due to Covid.

[Peppercorn1991]

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

 

Kev x

[comingback]

Yes, she cancelled the Montreal shows at the end of 2019.

[Jeanette]

 

 

Her last show was March 8th 2020 and then the tour shut down due to Covid.

 

I thought so, he doesn’t have all his facts correct then 😂

[Jeanette]

Yes, she cancelled the Montreal shows at the end of 2019.

 

Wasn’t this right at the start of the tour, after her opening Quebec shows?

[GoldenLeaf]

Yes, she cancelled the Montreal shows at the end of 2019.

Also in March 2020 for common cold before the Covid lockdown.

 

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

 

Kev x

Indeed! On March 11th Celine annouced she cancelled her shows due to common cold and her shows were supposed to resume on March 24th in Denver, Colorado. However on March 24th the U.S was on Covid lockdown so the Courage Tour never resumed : https://people.com/music/celine-dion-cancels-concerts-because-of-common-cold-doesnt-have-covid-19/

Edited July 4, 2024 at 06:48 PM by GoldenLeaf

[Jeanette]

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??