2110 replies to this topic

[PuraVida]

I've seen a couple of people online come forward and share their journeys with this illness. It gives me some hope, but very cautiously. I haven't seen very many people talk about the triggers they experience i.e. sound/light/stimuli. But the immune part of SPS seems more manageable.

[ImAliveUK]

Has anyone noticed any symptoms of SPS in any of her last recent performances? Or has she been lucky and avoided any episodes of spasms (even mild ones) while she’s been on stage?

Just wondering as I’ve not noticed any so I’m thinking this has got worse over a small period of time.

[scielle]

ImAliveUK, on 18 December 2022 - 07:20 AM, said:

Has anyone noticed any symptoms of SPS in any of her last recent performances? Or has she been lucky and avoided any episodes of spasms (even mild ones) while she’s been on stage?

Just wondering as I’ve not noticed any so I’m thinking this has got worse over a small period of time.

Yeah of course. That time she was doing shows in a back brace because of muscle spasms (in 2017, I think?) And of course she talked about having spasms as early as 2008 (that were aware of). Could have been unrelated, could have been early symptoms. SPS patients go undiagnosed for as long as 15 years and seems she may have been no different. At some point it just becomes completely debilitating and impossible to ignore.

[AdrienneM]

scielle, on 18 December 2022 - 08:24 AM, said:

Yeah of course. That time she was doing shows in a back brace because of muscle spasms (in 2017, I think?) And of course she talked about having spasms as early as 2008 (that were aware of). Could have been unrelated, could have been early symptoms. SPS patients go undiagnosed for as long as 15 years and seems she may have been no different. At some point it just becomes completely debilitating and impossible to ignore.

To be fair with the 2017 back brace, she explained during her first show back (the night after I believe) that it was spasming after she badly twisted it and they were sort of like after shocks after a bad injury- I don’t think they were necessarily the cause of the brace itself, the main issue was that she’d pinched a nerve and couldn’t really move.

[smw]

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.

I never knew this about Maria Callas.

I agree that Celine deserves better luck. She's such a good person.

[Nmj]

Here’s a sweet video created for Celine!  It was put together very nicely.

[maki_Dion-er]

that was a really sweet and well done video for Celine. I hope it reaches her.


It's been four years since I started following Celine and I am still discovering songs of hers that I've either never heard or heard once and completely forgot. This song he used at the end of the video is one example.

[ryba]

maki_Dion-er, on 19 December 2022 - 11:56 PM, said:

that was a really sweet and well done video for Celine. I hope it reaches her.


It's been four years since I started following Celine and I am still discovering songs of hers that I've either never heard or heard once and completely forgot. This song he used at the end of the video is one example.

faith from one heart

[Chantemoi]

Nmj, on 19 December 2022 - 10:49 PM, said:

Here’s a sweet video created for Celine!  It was put together very nicely.

Very well done video. Especially the Katie Couric interview clip (starting at about 15:45) in which she poignantly says:

“I meet a lot of terminally ill people before my shows… and it makes me strong… that’s why I’m not afraid to lose my voice”

[Katie]

I always look for Hope...

Edited by Katie, 05 January 2023 - 06:09 PM.

[ordinary fan]

Katie, on 05 January 2023 - 06:08 PM, said:

I always look for Hope...

What is this? Can't watch it

[Katie]

ordinary fan, on 06 January 2023 - 12:16 PM, said:

What is this? Can't watch it

[danger]

Nie top, cant' open The video.

[incognito]

The video plays if you click the “watch on YouTube” link.

[flutefreak]

Kayleycrank, on 09 December 2022 - 12:31 PM, said:

Saw Celine in vegas November 2017,  she was late on and later found out they were unsure if she would go ahead with that show. Luckily for me she did however the following shows were cancelled due to  lower back spasms. So I would say she’s probably been suffering with this unknowingly for a while ��

I was thinking the same, I was there that night also.

[scielle]

I keep seeing stories in the media, almost on a daily basis, along the lines of “local man/ woman has the same disease as Céline”. And most of them are pretty depressing. Glad to see Céline bringing attention to SPS, as so many sufferers feel finally validated, but man, I hope her case is not as extreme as these cases I’m reading about…

[Angel2006]

Does anyone know if anyone with Stiff Person's Syndrome has gone into complete remission from medication and treatment?

I am hoping and praying for this outcome everyday for Celine and for others suffering from this horrible syndrome.

[Myfluff]

Angel2006, on 14 January 2023 - 09:47 PM, said:

Does anyone know if anyone with Stiff Person's Syndrome has gone into complete remission from medication and treatment?

I am hoping and praying for this outcome everyday for Celine and for others suffering from this horrible syndrome.

[Myfluff]

3 are in remission from non FDA approved stem cell transplants.

[joaofilho]

I read an article in which the doctor says that some patients show improvement in the treatment, the disease goes into remission and they have a normal neurological life, of course a small number of patients.
I hope that Celine is also like this, all of them, with these great reports about this disease, they go ahead with the research and find something.

[CourageCeline]

I cannot believe this. You can see in the video how people are accusing her of lying about the syndrome and that she doesn't have any. In fact, the video is titled weirdly.

[smw]

There’s always going to be some weirdos.

[Chantemoi]

CourageCeline, on 17 January 2023 - 10:12 PM, said:

I cannot believe this. You can see in the video how people are accusing her of lying about the syndrome and that she doesn't have any. In fact, the video is titled weirdly.

Every click on the video gives these idiots more views &  more revenue… so… maybe let’s not share conspiracy videos?

[joaofilho]

Bone marrow transplantation is being very effective in the treatment of Stiff Person, many patients showed improvement in their clinical and neurological state, not needing to use wheelchairs and crutches.
It's a hope for Celine and many other people who suffer from it.
I hope she pursues these treatments and gives birth to people.


https://pubmed.ncbi....n Syndrome (SPS)%20is,as%20a%20treatment%20for%20SPS.

[joaofilho]

https://pubmed.ncbi....n Syndrome (SPS)%20is,as%20a%20treatment%20for%20SPS.

[Ukrfan]

When was the first time Celine's spasms were mentioned? After COVID happened?

[Davey84]

Ukrfan, on 30 January 2023 - 12:00 PM, said:

When was the first time Celine's spasms were mentioned? After COVID happened?

The first time I remember about it, was during AND. But it probably happened in the 90s too.

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[Davey84]

https://www.journald...tite-sur-celine

News from Claudette (for what it's worth), apparently Céline is in Denver:

Monday, January 30, 2023 12:00

Claudette Dion had not reacted publicly to the announcement of the rare disease from which her sister Celine is suffering.  “The best I can do is throw positive.  I really believe in the power of love," the 74-year-old singer told the Journal, who can't imagine not seeing Céline back on stage.


Last December, news quickly spread around the globe.  In a touching video, Celine Dion announced to suffer from a rare neurological disease, called stiff person syndrome.  This disease affects one in a million people.  Unsurprisingly, Céline had decided to cancel or postpone all the concerts of her world tour.

On the day of the announcement, Claudette Dion quickly decided to turn off her cell phone.  "I didn't want to do the 'bawling' show online," she told the Journal.  I had a lot of calls, but I turned off my phone because I was having trouble talking about it."

A month and a half later, Claudette Dion agrees to address her younger sister's illness.  “She did it with aplomb, she mentions about the video that Céline had shared.  I know she held back.  It was not in crisis, in tears, in distress.  She explained what it was.  But I trust that life will give back to her what she gave.  Because she is an extremely intelligent, extremely generous, talented girl.  And in love with life too.  […] The best I can do is to throw something positive.  I truly believe in the power of love.  I wish him the best of luck, that's for sure."

In Denver for treatments

When asked if she has had any recent news from Celine, Claudette replies that she knew she was in Denver, Colorado these days.  “She is surrounded by specialists.  »

“Since the age of 12 she has been working, this child, continues Claudette on her sister.  She didn't really have a teenager.  She has always worked.  She always gave herself.  It's a choice.  She did not pity.  But at the same time, to have given so much and to be able to enjoy the rest of your life with your aging children..."

Claudette Dion cannot envisage a future in which Celine would no longer go back on stage.  "I can't imagine it the same way.  She is so in her place, so on her X. Rather than crying over her fate, I try to send her positive vibes and ensure that one day she will go on stage.

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[Peppercorn1991]

Thanks Davey!

Kev x

[joaofilho]

I hope they seek the best for her.
I didn't know Denver was the best place.