Céline has Stiff-Person Syndrome

[Ukrfan]

See that’s the thing though… yes we all think she looks to be doing great, but we don’t know how bad her bad days are. This could’ve been a great day, or this could’ve been a normal day but maybe it affects her singing voice more than her physical attributes.

 

If people didn’t believe that Celine was bedridden, using a wheelchair or on her death bed than this appearance really isn’t breaking news… but it’s great news as a fan to finally have confirmation that this all but confirms that while she may not be better she isn’t getting worse as of now and her spirits are in tact, she looks to have come a long way since last years announcement.

 

You know, I had a thought that maybe it's her voice that mostly affected, and they cannot find a treatment because it's so specific (most people wouldn't care much about chances in their voice, but for a singer, especially such a technical vocalist as Celine, that's a big deal).

 

At the same time, Celine herself admitted in her video that she had troubles walking (which we don't really see in yesterday appearance; she even walks backwards at some point), and "every aspect of her life" sounds like more than just voice affected). So I don't know. I just hope she's better, and that she will be back at some capacity soon. I miss her so much

[joaofilho]

https://www.dailymail.co.uk/tvshowbiz/article-12697959/Celine-Dion-55-makes-APPEARANCE-THREE-years-hockey-game-Las-Vegas-amid-terrifying-battle-stiff-person-syndrome.html

[Ukrfan]

https://www.dailymai...n-syndrome.html

 

Thank you for the article. The first time I saw this picture.

 

Edited November 1, 2023 at 05:38 PM by Ukrfan

[Zofia]

The photos were a pleasant surprise, but the recording exceeded all expectations: the way she moved and spoke suggested nothing if we knew nothing about her diagnosis. Even if medicalized (?), she was natural, without appearing slowed down or hindered in her movements. Clearly, they've finally found a treatment that's working wonders so far. It allows her to control her symptoms and live her life. Putting all the rumours to one side, Céline herself has revealed just how trying it must have been (Céline doesn't like to complain, so if she insists "these spasms affect every aspect of my daily life", that says it all). Is she already in remission? Let's hope so...

 

Has she successfully undergone HSCT (stem cell transplantation)? If so, at her age, would she already be ready to expose herself to the danger of infection by meeting an entire hockey team, after having totally rebooted, from scratch, her immune system? I doubt it.

 

Now I only have two big dreams: firstly, that the effect is long-lasting. That she be entirely free to choose what to do with the rest of her life. Secondly, that, once she's better, she'll do something significant for the patient community. Thanks to her, media exposure and awareness of SPS has exploded - but research funding has yet to follow. I'm keeping my fingers crossed for her and other patients.

 

(A technical note in the margin: lately I've been having a lot of trouble staying logged in to the forum; I'm hoping for an improvement in the way it works, as it's really very inconvenient)

Edited November 1, 2023 at 08:27 PM by Zofia

[CelinesDIVO5]

The photos were a pleasant surprise, but the recording exceeded all expectations: the way she moved and spoke suggested nothing if we knew nothing about her diagnosis. Even if medicalized (?), she was natural, without appearing slowed down or hindered in her movements. Clearly, they've finally found a treatment that's working wonders so far. It allows her to control her symptoms and live her life. Putting all the rumours to one side, Céline herself has revealed just how trying it must have been (Céline doesn't like to complain, so if she insists "these spasms affect every aspect of my daily life", that says it all). Is she already in remission? Let's hope so...

 

Has she successfully undergone HSCT (stem cell transplantation)? If so, at her age, would she already be ready to expose herself to the danger of infection by meeting an entire hockey team, after having totally rebooted, from scratch, her immune system? I doubt it.

 

Now I only have two big dreams: firstly, that the effect is long-lasting. That she be entirely free to choose what to do with the rest of her life. Secondly, that, once she's better, she'll do something significant for the patient community. Thanks to her, media exposure and awareness of SPS has exploded - but research funding has yet to follow. I'm keeping my fingers crossed for her and other patients.

 

(A technical note in the margin: lately I've been having a lot of trouble staying logged in to the forum; I'm hoping for an improvement in the way it works, as it's really very inconvenient)

 

She could have been having treatment for longer than we know. Just because she announced her diagnosis in December, doesn’t mean that’s when she was diagnosed.

[smw]

It’s such a relief to see Celine looking so healthy. And to be surrounded by her sons… out in the world. What a wonderful surprise/gift for us fans.

 

If she’s feeling stronger and confident that the treatments have worked, perhaps she’ll do an interview at some point down the road. Or maybe she’ll hold off until the documentary is released.

 

I’m just thrilled she seems to be doing better!

 

Edited November 1, 2023 at 09:57 PM by smw

[scielle]

There are a few more pics with other players on the Habs IG page (stories): https://instagram.com/stories/canadiensmtl/3226596089774734962?igshid=MzRlODBiNWFlZA==

And here: https://www.instagram.com/p/CzHHZhRRtT5/?igshid=MzRlODBiNWFlZA==

Edited November 1, 2023 at 10:14 PM by scielle

[scielle]

And now a post from Céline, too: https://www.instagram.com/p/CzHvDejLtkC/?igshid=MzRlODBiNWFlZA==

 

I wonder if her acknowledging this means she’s ready to start re-entering public life. Where will we see her next? (My vote is Adele’s show; I’m sure she’s curious to see it and it’s familiar ground so hopefully not too much of a stressor.)

 

Edited November 1, 2023 at 10:59 PM by scielle

[LukeD]

And now a post from Céline, too: https://www.instagra...zRlODBiNWFlZA==

 

I wonder if her acknowledging this means she's ready to start re-entering public life.

This is definitely a statement. Actions speak louder than words.

[Zofia]

She could have been having treatment for longer than we know. Just because she announced her diagnosis in December, doesn't mean that's when she was diagnosed.

 

We don't know the details, but sincerely, I don't think so: in her December statement she says "I was recently diagnosed" and I'd take her at face value; probably that could mean the delay of a month, but it seems no more than that. Muscle spasms are a widespread and very uncharacteristic symptom; statistically it takes 7 years to diagnose SPS; if it took several months in her case, it's exceptionally fast (from the beginning of 2022 she repeatedly confirms to undergo treatment, but probably without a precise diagnosis).

 

Laurence Catinot-Crost gives some information in her book about the holistic treatment project that Céline obtained in Denver in early 2023; rumor has it that she was also receiving IVIG. Perhaps she was then offered something else, perhaps she simply had to wait for an improvement, but the result is splendid.

[Squall]

I cried when I saw these recent pics. I've been so worried about what she could be going through all this time. It's a relief to know that, at least sometimes, she's able to go out and be happy and have somewhat of a normal life.

 

I just pray she doesn't push herself. I do not want her to return to show business if her body is telling her no. I would be happy if she never performed again just so long as she's able to be comfortable and happy. If from this point on, just to see a photo of her out for a walk every now and then, that would be enough for me. Just knowing she's not suffering is all I want.

[scielle]

And now a post from Céline, too: https://www.instagram.com/p/CzHvDejLtkC/?igshid=MzRlODBiNWFlZA==

 

Posted, deleted, reposted the same thing… classic Team Céline. 🤦‍♀️

https://www.instagram.com/p/CzHwx4gL7Bh/?igshid=MzRlODBiNWFlZA==

 

Anyway, nice to see so many media outlets pick up on this.

 

Laurence Catinot-Crost gives some information in her book about the holistic treatment project that Céline obtained in Denver in early 2023; rumor has it that she was also receiving IVIG.

Oh? What does it say? (Not that I put much weight in the author, given what happened there…)

Edited November 2, 2023 at 12:00 AM by scielle

[smw]

This is definitely a statement. Actions speak louder than words.

 

Agreed.

[Zofia]

 

 

Oh? What does it say? (Not that I put much weight in the author, given what happened there…)

 

Yeah, Ms Catinot-Crost hasn't earned the opinion of the most reliable writer And yet, her book - boring to sleep on - seems well worked, documented and non-sensational at all; it's "top student" type writing, unexciting but well prepared. The fragments about SPS are reliable; LCC cites official medical documents to provide a fairly complete description of the disease.

 

I wonder what was the source of some of the details of the therapeutic process that the author seems to know: Dr. Schofield herself and her entourage? Did they take advantage of the opportunity to get some publicity for themselves using Céline's name, like Dr. Jorgensen of Montpellier? Here's the relevant fragment (in machine translation):

 

“Boston neurologist Julien Cavanagh, a specialist in autoimmune diseases, explains: "It's an autoimmune disease. The immune system protects us against viruses and bacteria. It turns against the person and starts attacking microscopic structures in the central nervous system that manage muscle relaxation. Muscle relaxation, which can no longer take place, induces a muscular rigidity that is very difficult to bear. Sometimes it's just an arm or a leg, but in the majority of cases, in classic syndromes, it's the whole body, and in particular the trunk, i.e. abdominal muscles and back muscles. We have to treat this symptomatically with muscle relaxants to help the person relax their muscles. It's a chronic disease, so there's no cure. We have no definitive treatment that will enable the person to be cured. It's a very, very rare syndrome”. Followed by Jill R. Schofield at the Center for Multisystem Disease in Denver, Colorado, she was offered treatment at the Mayo Clinic in Rochester, Minnesota, in March 2023. Before taking any steps, Céline read the various publications and fifty podcasts recorded by Dr Jill Schofield, which gave an idea of her therapy choices, then dialed 303 366 6633 and chatted with her assistant Chandra Strohm. The assistant answered her questions and sent her a document containing some 50 very specific questions about her medical history, childhood illnesses, medical problems she faced as a teenager, pregnancies, lifestyle, diet, current symptoms and attempts at treatment. How often do you wake up at night because of pain? Do you suffer more during the day? At what times? Are you prone to migraines? Do you have a dry mouth? Do you have trouble swallowing? It's all here... A few days later, the appointment was made in Denver, Colorado, in the southern suburbs, at 8101 East Lowry Boulevard, in suite 50, on the second floor. Jill Schofield is founder and director of the Center for Multisystem Disease. She worked for many years in the hospital and as a teacher at St. Joseph's Hospital in Denver before turning her attention to autoimmune diseases. She received the Dysautonomia Support Network Patient's Choice Game Changer Award in 2019 for her work on the use of immunoglobulin therapy in autoimmune dysautonomia. Dr. Schofield's goal with each patient is to determine the underlying cause of their symptoms and achieve an improvement in their quality of life. Céline spent three hours face-to-face with him. The practitioner reviewed her history, symptoms and radiological examinations. She performed a detailed physical examination and tests. Céline has found a therapist who can manage her ailments. A second two-hour appointment led to the implementation of an experimental protocol of immunoglobulin injections in the lumbar region. Acceptance is a process that follows the diagnosis of a major chronic disease. This process usually takes several months, even years, as patience and perseverance are needed to learn how to manage it. Jill Schofield encourages an anti-inflammatory diet, regular physical activity, stress reduction through breathing techniques and meditation. Céline now knows that she has to make professional choices to reduce stress.”

[incognito]

One of those professional choices to reduce stress could have been closing down her production company. She can hire a 3rd party for her needs in that regard.

[scielle]

Thanks for this.

Very bizarre to be publishing phone numbers and addresses in a book… and honestly a lot of that seems like just general public knowledge and logical assumptions one could make if they know anything about the disease or the doctor in question. No medical professional would give out private healthcare info like that so I suspect some of this is from sources of a “friend of a friend of a friend” kind, and probably conjecture injected somewhere along the way.

 

[scielle]

Guess it’s no longer possible to embed tweets in here (probably a good thing, give the cesspool that’s become…), but here’s a mini story from CBS Evening News -

Javascript is not enabled OR refresh the page to view

Click here to view the Tweet

Edited November 2, 2023 at 01:48 AM by scielle

[Zofia]

Thanks for this.

Very bizarre to be publishing phone numbers and addresses in a book… and honestly a lot of that seems like just general public knowledge and logical assumptions one could make if they know anything about the disease or the doctor in question. No medical professional would give out private healthcare info like that so I suspect some of this is from sources of a "friend of a friend of a friend" kind, and probably conjecture injected somewhere along the way.

 

It's quite likely that LCC puts into the text what is ultimately available to everyone - the questionnaire, the phone number, the address, the examination process - in order to pretend to be "insider" and have access to private information. Yet "lumbar immunoglobulin injections" should surely be covered by medical secrecy. Perhaps the author was simply following a tabloid rumour in April (when there was much talk of an "experimental treatment", the results of which should have been visible after nine months).

[scielle]

Maybe it’s a generational thing. I’ve met many her age who think they alone discovered some hidden secret by…Googling. 🤭

[Abodi2002]

Like everybody else here I’m glad she’s doing well as stated before. However, if I’m understanding the timeline of events correctly, it seems that people are trying to say that her last appearance before this was 2020. Wasn’t there a public appearance from early 2022 before the diagnosis?

[Zofia]

Maybe it's a generational thing. I've met many her age who think they alone discovered some hidden secret by…Googling.

 

Hehe, I was following her social media for a few months (which, I confess, sometimes bordered on the heroic), and your conjecture fits well with my general impression

[Zofia]

Like everybody else here I'm glad she's doing well as stated before. However, if I'm understanding the timeline of events correctly, it seems that people are trying to say that her last appearance before this was 2020. Wasn't there a public appearance from early 2022 before the diagnosis?

 

You're right, on 19.01.2022 Paris Match published some photos taken when she accompanied her son to the dentist in Henderson (only it wasn't an official appearance) https://www.parismatch.com/People/Celine-Dion-la-photo-qui-inquiete-1783964

[Nmj]

This is definitely a statement. Actions speak louder than words.

 

I wonder what’s next at this point… I do find it odd that she officially posted for the first time in a year something signed by Celine personally on social media and this is what it is. I always thought the first appearance would be a sit down interview… regardless, I’m glad she’s back to at least enjoying life a bit…. We know like others said this appearance could’ve been hidden and yet Celine opted for herself to not only be seen but eventually actually make a statement on the the appearance.

[mb011]

Personally at this point I think of her health. I am glad to see her doing ok, and going out and having fun. I dont expect any interview or anything similar, as she hasnt done any of that in recent years. At this point, this seems just the right way to shut down rumors about the wheelchairs and stuff, and say I'm here I'm living.

 

Sent from my SM-S911B using Tapatalk

 

 

[No1IrishFan]

I’m also wondering what’s next. Not that there has to be something next. Celine is very aware of optics and she knows being photographed out and about will shut down the rumours. That could be the sole purpose of her visit being photographed.

 

I’m expecting silence for another while personally.

[A new day...]

I am overjoyed with these new footages of Celine enjoying life with her sons! It speaks so much more than words, indeed.

The video looks like nothing happened. She's herself and moving like we'd expect anyone to.

 

Of course by sharing these with the world, she wants to let us know that she's doing good. Or at least better than what we could think. It's a wonderful wonderful gift, bringing us hope for the future!

Edited November 2, 2023 at 01:04 PM by A new day...

[Ukrfan]

You're right, on 19.01.2022 Paris Match published some photos taken when she accompanied her son to the dentist in Henderson (only it wasn't an official appearance) https://www.parismat...nquiete-1783964

 

She was also out in Spring 2022 when she helped decorated the elephant for the Resorts World. We only have one picture of that day though.

[Állex Sodi]

 

I always thought the first appearance would be a sit down interview…

 

I believe this disease is unpredictable. She probably has good days and bad days, and no way to anticipate how she is going to be, which makes complicated to book interviews and other work related stuff. It’s easier with events like this, cause if she is not feeling well she just don’t go and there’s no consequences, no contracts, no money lost.

[LukeD]

I wonder what’s next at this point… I do find it odd that she officially posted for the first time in a year something signed by Celine personally on social media and this is what it is. I always thought the first appearance would be a sit down interview… regardless, I’m glad she’s back to at least enjoying life a bit…. We know like others said this appearance could’ve been hidden and yet Celine opted for herself to not only be seen but eventually actually make a statement on the the appearance.

We can anticipate a short clip wishing us Merry Christmas next month. I believe there will loads of silence after that. She will only give an interview when/if she releases new music. Edited November 2, 2023 at 06:52 PM by LukeD

[george_matei]

What did you guys think about that?

https://vm.tiktok.com/ZGJE4cPyc/