Céline has Stiff-Person Syndrome

[comingback]

. Edited June 15, 2024 at 09:33 AM by comingback

[Chantemoi]

Her doctor kind of reminds me of Clarice Starling

 

I was also thinking that lol.

[scielle]

I wonder what she’s doing to “rehabilitate her voice”, as she put it in one of the interviews. And who her vocal coach is.

[Nmj]

I wonder what she’s doing to “rehabilitate her voice”, as she put it in one of the interviews. And who her vocal coach is.

 

Me too . That’s where a follow question was needed.

[CourageProject]

https://www.instagram.com/reel/C8Q-gNiScPr/?igsh=djF1a2ZpcHd0emc1

 

 

Céline has shared her story of inspiration and struggle..now it's your time to share your inspiring stories! Use the audio (The Hard Way) and share your amazing stories!

[Chantemoi]

https://www.instagram.com/reel/C8Q-gNiScPr/?igsh=djF1a2ZpcHd0emc1

 

 

Céline has shared her story of inspiration and struggle..now it's your time to share your inspiring stories! Use the audio (The Hard Way) and share your amazing stories!

 

Cool idea. I still cannot believe this song is not part of the soundtrack!!

[scielle]

Already in the People thread, but putting here as well as this is mostly Dr Piquet talking about SPS:

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[Mozzy88]

Celine just devolved $2mln to University of Colorado for the research on autoimmune diseases. “Amanda Piquet, MD, FAAN, director of the Autoimmune Neurology Program at the University of Colorado Anschutz Medical Campus, will be the inaugural chair holder.”

 

http:// https://www.showbiz411.com/2024/06/17/celine-dion-donates-2-mil-to-university-of-colorado-for-study-of-autoimmune-diseases

 

 

Sent from my iPhone using Tapatalk

[scielle]

"Her condition today is “good,” she said, thanks to rehabilitation. “It’s five days a week. Sometimes we push it even further because I’m getting ready to perform,” she said. “My passion as a performer will never disappear. So I am training, rehabilitating myself.” She added that she’s “working hard” to be at the level she once was, when she was easily able to belt out high notes."

 

https://www.vanityfair.com/hollywood/story/celine-dion-documentary-stiff-person-syndrome-premiere

[No1IrishFan]

"Her condition today is “good,” she said, thanks to rehabilitation. “It’s five days a week. Sometimes we push it even further because I’m getting ready to perform,” she said. “My passion as a performer will never disappear. So I am training, rehabilitating myself.” She added that she’s “working hard” to be at the level she once was, when she was easily able to belt out high notes."

 

https://www.vanityfair.com/hollywood/story/celine-dion-documentary-stiff-person-syndrome-premiere

 

‘Getting ready to perform’

but where and when Celine, plz tell us

[PuraVida]

"Her condition today is “good,” she said, thanks to rehabilitation. “It’s five days a week. Sometimes we push it even further because I’m getting ready to perform,” she said. “My passion as a performer will never disappear. So I am training, rehabilitating myself.” She added that she’s “working hard” to be at the level she once was, when she was easily able to belt out high notes."

 

https://www.vanityfa...ndrome-premiere

 

I don't even care as much about Vegas in this moment in time. For me, a second Olympic appearance is worth weeks if not months of her being locked away in a Vegas theatre.

[kaye2023]

Good on her and for Dr. Piquet's UC research team. I hope her foundation also actively calls for grant proposals from other reputable research teams, with coordinated of point of interests, of course. Time is of the essence for degenerative diseases. Heck, even pharma/biologics for symptoms management, it may have dire negative consequences on your body when used long term. If finding an SPS cure is a question of time and money, at least you can solve the latter and have many potentials cooking all at the same time.

 

I don't mean Céline should carry the burden of funding the bulk of SPS research because "eh, she's rich," but, unfortunately, it is such a niche disease that will not get general funding priority, and if I were in her shoes, I'd rather earmark a chunk of my money for that than reach the worst progression of the disease because one stream of research took so long (especially considering the disease might be hereditary, if genetic). Save more than enough a good chunk for myself and my kids (and grandkids, whee, RC lol), then be open to supporting more research. She's worked hard for her wealth, now let it save her when she needs it the most.

 

Who knows, maybe successful studies may turn out to be breakthrough investments for SPS and/or other neurological diseases that the Angelil-Dion portfolio may expand into the medical sciences, aside from smoked meats, music and real estate. How wonderful it would be if at least one of the twins is science-inclined.

 

Celine just devolved $2mln to University of Colorado for the research on autoimmune diseases. “Amanda Piquet, MD, FAAN, director of the Autoimmune Neurology Program at the University of Colorado Anschutz Medical Campus, will be the inaugural chair holder.”

[stevo]

I’ll never expect another thing from her after watching the Doc. What she is going through and has endured, when we were dissing her and feeling disappointment.

[Ukrfan]

So we basically have a confirmation Celine hasn't gone through stem cell transplant (which we speculated a lot here during the Silence).

 

I find it interesting it was never mentioned by Dr. Piquet in all those interviews as a possible treatment (like IVIG, diazepam, PT etc.). Maybe she's not a fan.

[scielle]

So we basically have a confirmation Celine hasn't gone through stem cell transplant (which we speculated a lot here during the Silence).

 

I find it interesting it was never mentioned by Dr. Piquet in all those interviews as a possible treatment (like IVIG, diazepam, PT etc.). Maybe she's not a fan.

 

I think it’s a last resort. “You have to be sick enough to get it but healthy enough to survive it.”

[Céline RO]

1718752481[/url]' post='2452392']

I don't even care as much about Vegas in this moment in time. For me, a second Olympic appearance is worth weeks if not months of her being locked away in a Vegas theatre.

 

I’m the opposite. I don’t care much for one-off appearances, albums, films and all that. Don’t get me wrong, they’re awesome when there’s nothing else going on, but all I really want is her doing her own regular shows like she used to. That’s what she loves most and that’s where I most love seeing her. Everything else is a bonus.

Edited June 19, 2024 at 10:02 AM by Céline RO

[Ukrfan]

I think it's a last resort. "You have to be sick enough to get it but healthy enough to survive it."

 

As far as I understand, there are two types of doctors: those who consider it the last resort and those who claim "earlier you do it, better the results". It seems like the second opinion was prevalent during the latest SPS symposium, at least according to the Stiff Man blog A Great Symposium Missed (thestiffman.com)

 

Apparently, one of the main issues was about when you have the stem cell transplant, the earlier in your progression the better. That would make sense. I'm hesitant to say that HSCT is a cure for SPS, well not only hesitant, but actually resolute in saying that it isn't. I still have a few symptoms, but I no longer need a wheelchair or walker, I've come down from 45mg of Diazepam to 5mg, am completely off of Baclofen, and most importantly, my hair has grown back...mostly. I can certainly see where, if I had the procedure prior to needing a walker, I would probably be closer to normal than where I am today. Having said that, I have started slowly jogging again, even after taking a pretty big spill after a big startle, that set me back a few weeks.

[scielle]

As far as I understand, there are two types of doctors: those who consider it the last resort and those who claim "earlier you do it, better the results". It seems like the second opinion was prevalent during the latest SPS symposium, at least according to the Stiff Man blog A Great Symposium Missed (thestiffman.com)

 

Thanks, I’ve been reading his blog but haven’t yet seen this last entry. Interesting developments.

[tshlw]

Thanks, I've been reading his blog but haven't yet seen this last entry. Interesting developments.

 

Yeah was very interested in why it is not regularly used if basically can cure you. But then seems can be dangerous. Will have to give the blog a read.

[Ukrfan]

Yeah was very interested in why it is not regularly used if basically can cure you. But then seems can be dangerous. Will have to give the blog a read.

 

It wipes away your immune system completely, so even a basic flu will kill you. However, this particular issue would be less problematic for Celine (in theory) and she can afford staying in a completely sterile room (or maybe even build one at her home).

 

However, maybe she doesn't want to be isolated from her kids in a way for a few months. Or she just doesn't feel risking her life given her kids already lost their father.

 

That's understandable. I just noticed how Dr. Piquet hasn't mentioned it at all in her interview. Which makes me think that maybe she was actually telling not general treatments, but those that Celine uses in particular (without saying so not to break HIPPA and ethic code).

[tshlw]

It wipes away your immune system completely, so even a basic flu will kill you. However, this particular issue would be less problematic for Celine (in theory) and she can afford staying in a completely sterile room (or maybe even build one at her home).

 

However, maybe she doesn't want to be isolated from her kids in a way for a few months. Or she just doesn't feel risking her life given her kids already lost their father.

 

That's understandable. I just noticed how Dr. Piquet hasn't mentioned it at all in her interview. Which makes me think that maybe she was actually telling not general treatments, but those that Celine uses in particular (without saying so not to break HIPPA and ethic code).

 

Can see where that is dangerous but for some if they could afford it could see where they would take the risk. But I agree she would never risk her life since the kids lost their father.

 

As Celine has said hopefully they will find a cure and one not as dangerous as stem cell transplant.

[incognito]

 

 

Yeah was very interested in why it is not regularly used if basically can cure you. But then seems can be dangerous. Will have to give the blog a read.

 

It involves high doses of chemotherapy usually. That in itself can be a killer. My mother didn’t die from cancer…she died from chemotherapy overdose.

[Nmj]

[Critiaslux]

Celine just devolved $2mln to University of Colorado for the research on autoimmune diseases. “Amanda Piquet, MD, FAAN, director of the Autoimmune Neurology Program at the University of Colorado Anschutz Medical Campus, will be the inaugural chair holder.”

 

https://www.showbiz411.com/2024/06/17/celine-dion-donates-2-mil-to-university-of-colorado-for-study-of-autoimmune-diseases

 

 

Sent from my iPhone using Tapatalk

 

Céline, as usual, does the right thing.

[LukeD]

Cool idea. I still cannot believe this song is not part of the soundtrack!!

Same way 'Ashes' did not make it to an album about loss and individuality that also had a big fire in its cover photo.

[Nmj]

 

https://x.com/denvernews/status/1803599826539475256?s=46&t=TA5MCZLCELI5_tgOe-P7Mw

 

https://x.com/denverpostbrk/status/1803592210396364850?s=46&t=TA5MCZLCELI5_tgOe-P7Mw

 

 

This one says CELINE DION FOUNDATION will donate the 2M “over the next 5 years”.

[scielle]

This one says CELINE DION FOUNDATION will donate the 2M “over the next 5 years”.

 

Yes, it’s her foundation. The original press release has all the details.

https://news-cuanschutz-edu.cdn.ampproject.org/c/s/news.cuanschutz.edu/news-stories/cu-anschutz-receives-2-million-from-the-c%C3%A9line-dion-foundation-to-advance-autoimmune-neurologic-disorders-research?hs_amp=true

 

“Piquet, whose team is conducting groundbreaking research on autoimmune neurologic disorders, has treated the Canadian singer’s SPS for two years at UCHealth University of Colorado Hospital. She is the inaugural Céline Dion Foundation Endowed Chair in Autoimmune Neurology, made possible by a $2 million philanthropic investment from the Céline Dion Foundation.

Piquet said the foundation’s gift represents a turning point in the understanding of SPS and other autoimmune neurologic diseases.

[…]

Piquet said the philanthropic investment will help support more large-scale epidemiological studies, which are already showing that SPS is not as rare as initially thought. First identified in the 1950s, SPS is estimated to affect around one in 1 million people; new studies at CU Anschutz have found a prevalence rate of approximately two in 100,000. Piquet noted that improved recognition of the disease and the support of this philanthropic gift will ultimately lead to innovative treatment trials.

 

The gift will expedite research discoveries. Specifically, over five years it will:

- Support the new endowed chair and her efforts to expand research and develop a deeper understanding of SPS and other rare autoimmune neurological disorders;

- Expand CU Anschutz’s autoimmune neurologic disease registry and biorepository, increasing the volume of data to propose effective shifts to the care for people experiencing SPS; and

- More quickly identify the patterns in symptoms people are experiencing to diagnose the disease earlier and provide solutions that will lead to a better quality of life for patients.”

[…]

 

 

Edited June 20, 2024 at 02:18 AM by scielle

[Nmj]

 

 

Yes, it’s her foundation. The original press release has all the details.

https://news-cuanschutz-edu.cdn.ampproject.org/c/s/news.cuanschutz.edu/news-stories/cu-anschutz-receives-2-million-from-the-c%C3%A9line-dion-foundation-to-advance-autoimmune-neurologic-disorders-research?hs_amp=true

 

“Piquet, whose team is conducting groundbreaking research on autoimmune neurologic disorders, has treated the Canadian singer’s SPS for two years at UCHealth University of Colorado Hospital. She is the inaugural Céline Dion Foundation Endowed Chair in Autoimmune Neurology, made possible by a $2 million philanthropic investment from the Céline Dion Foundation.

Piquet said the foundation’s gift represents a turning point in the understanding of SPS and other autoimmune neurologic diseases.

[…]

The gift will expedite research discoveries. Specifically, over five years it will:

- Support the new endowed chair and her efforts to expand research and develop a deeper understanding of SPS and other rare autoimmune neurological disorders;

- Expand CU Anschutz’s autoimmune neurologic disease registry and biorepository, increasing the volume of data to propose effective shifts to the care for people experiencing SPS; and

- More quickly identify the patterns in symptoms people are experiencing to diagnose the disease earlier and provide solutions that will lead to a better quality of life for patients.”

 

Since this news, now I’m curious to see what the SPS community is thinking?

[scielle]

 

Since this news, now I’m curious to see what the SPS community is thinking?

 

https://www.facebook.com/share/G2EbNRR3S9H55siw/?mibextid=WC7FNe

[PuraVida]

I’m the opposite. I don’t care much for one-off appearances, albums, films and all that. Don’t get me wrong, they’re awesome when there’s nothing else going on, but all I really want is her doing her own regular shows like she used to. That’s what she loves most and that’s where I most love seeing her. Everything else is a bonus.

 

I see. For me, not all one-off projects are created equal, but I understand your feelings. I agree she probably wouldn't be as happy/fulfilled without regular performing.

 

I think if at the end of 2024, if "all the fans get" is this the Vogue stuff, the documentary + her promo appearances for it, an Olympic appearance, and maybe 1-3 performances in some capacity...that would be a very fruitful (apple-filled) year.