Céline has Stiff-Person Syndrome

[LukeD]

I think everything has already been said. If you actually think it's necessary to “defend Céline” from a few patients in poor health and financial situations, it reinforces my point. Being uncritical is never safe space, but it's possible that you're right, because that's the nature of any community of someone's fans?

Your posts are very offensive and I hope you find the time and the space to reflect on your practice. I will first respond to content, then to the offensive remarks.

 

First of all, I cannot speak of any other fan communities - I can only talk about CDF that I am member of. In that capacity, I can reassure you that we do not take at face value everything Celine says, nor do we agree with everything Celine does. Just to give you some examples, the majority of fans have decided to boycott the new compilation album because they feel the label is milking our money. Similarly, CDF has been a place where people would constantly post complaints in relation to career decisions (e.g. Vegas residencies, repetitve set-lists, lack of artistic direction, lack of involvement on social media etc) or even insignificant issues (hair, make-up, clothing).

 

Second, I do not think that the reason why I disagree with you is due to my uncritical nature. To me, it has all to do with the bias that I see in your posts. You chose specific mixed responses of the SPS community to share and establish a basis upon which you argued that Celine's image is harmed in the SPS community. You then attributed this to her financial priviledge and Claudette's statements that Celine ''deserves to be fine'' and that she has ''the best doctors'' - statements you had previously found insensitive, despite several members pointing to the contrary. On that note, and emphasising that Celine has resources others don't, you doubted Celine's capacity to become an SPS spokesperson. Hence, my post #1974 in which I said that if Celine becomes a spokesperson she will draw from HER experience.

 

The comments that have been posted since are quite telling. You have engaged in belittling in a number of times, describing members of the forum as:

 

1) ''people who only know SPS from media''

2) ''people fascinated by a public figure they don't even know personally''

3) ''smarter and fairer, as long as we do not suffer from SPS''

4) ''uncritical because that's the nature of any community of someone's fans''

 

To put it simply, you have turned a neutral discussion on priviledge (or lack of) into a personal one, hence the belittling. This tells me that you have taken this discussion very, very personally. And this further reinforces the bias that I initially saw in your posts. I had seen a similar bias few weeks ago when you painted as insensitive Celine's response to a question in relation to her nationality. I remember you implied how hurtful this would be for Quebeckers. Thankfully, quebecflower - who IS from Quebec and LIVES in Quebec - said that nobody really cared about the statement, there was no reaction whatsoever.

 

Therefore, the assumption that I draw about you is that you must have experienced lack of priviledge/injustice and still are quite upset about it. You therefore treat specific populations (SPS patients, Quebeckers) as lenses through which you express your very own frustrations over (real or perceived) injusticies. You have very weird feelings about Celine and this also shows in how you constantly engage in binary oppositions (e.g. ''Celine VS the SPS community'' as if Celine is not disabled herself).

 

That's my two cents, of course. As I said, it's an assumption - not a conclusion. At least, I am critical enough to know the difference between the two.

[scielle]

Your posts are very offensive and I hope you find the time and the space to reflect on your practice. I will first respond to content, then to the offensive remarks.

 

Are we reading the same posts? Because I truly don't see what you see at all, and certainly nothing that I'd consider offensive of belittling.

I see several months worth of informative, articulate and balanced posts on SPS; some of the most nuanced content on this forum.

So I, for one, am appreciative, both of Zofia's extensive contribution in this thread and yours, such as above. Am always glad when we can have a thoughtful discussion on here that isn't about some combo of [eyebrows/ hair/set lists/ terrible management/ etc].

[tshlw]

Colorado doctor has treated Celine Dion's stiff person syndrome for 2 years

 

[scielle]

Colorado doctor has treated Celine Dion's stiff person syndrome for 2 years

 

Amanda Piquet! We’ve written about her here quite a bit, so turns out the pool of specialists really IS that small!

[tshlw]

Amanda Piquet! We've written about her here quite a bit, so turns out the pool of specialists really IS that small!

 

Those interviewers wanted to hear so much more but that Dr was not going to reveal anything confidential.

[scielle]

Those interviewers wanted to hear so much more but that Dr was not going to reveal anything confidential.

Good. She’s a pro.

She spoke recently at the annual SPS forum and has done some seminars on SPS that I’ve found online (and think posted them here in the past).

[stevo]

She was very professional - so interesting and crazy that she’s been going through this

[Nmj]

 

Good. She’s a pro.

She spoke recently at the annual SPS forum and has done some seminars on SPS that I’ve found online (and think posted them here in the past).

 

I wonder if we will get to see her in the doc at the Colorado facility with Celine?!

[scielle]

Bumping this up -

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[scielle]

https://people.com/celine-dion-details-stiff-person-syndrome-symptoms-17-years-going-down-cover-story-exclusive-8661041

 

“Over the last two years, Dion has been following a combination treatment plan involving medication, immune therapy, vocal therapy and intense physical rehabilitation five days a week.

 

"The good thing that's on my side is that I love doing all these things," she says, grinning. Dion is unwaveringly resilient, but Dr. Amanda Piquet, who serves as director of the autoimmune neurology program at the University of Colorado and is the physician who diagnosed Dion, emphasizes how strenuous her treatments are. "It's a full-time job," Piquet says. "She is incredibly determined."

[…]

“She's also found new purpose — both to raise awareness about SPS in hopes of finding a cure, and to encourage others struggling silently to seek help.

 

"If I would have just stayed secretly behind, my home would have become a prison, and I would have become a prisoner of my own life," she says. "Today, I live one day at a time. The fact that I found the strength to communicate my condition with the world makes me very proud. Maybe my purpose in this life is to help others, and that is the greatest gift."

Edited June 12, 2024 at 02:40 AM by scielle

[scielle]

Thought it might be a good time to repost this webinar on SPS from Dr. Piquet -

[scielle]

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“In an interview before the documentary's release, Piquet said Dion "is improved and overall making progress," according to CU Anschutz.

SPS disproportionately affects women, with about 60% to 70% of cases, and the median age of onset is 50. The disease can be life-threatening if left untreated.

"It can be very disabling," Piquet said. "I think sometimes part of that might just be due to how long patients suffered from symptoms before they were put on immune therapy. We don't have good studies saying patients that were initiated on therapy early have less disability."

 

Edited June 12, 2024 at 04:49 AM by scielle

[LukeD]

Are we reading the same posts? Because I truly don't see what you see at all, and certainly nothing that I'd consider offensive of belittling.

I see several months worth of informative, articulate and balanced posts on SPS; some of the most nuanced content on this forum.

So I, for one, am appreciative, both of Zofia's extensive contribution in this thread and yours, such as above. Am always glad when we can have a thoughtful discussion on here that isn't about some combo of [eyebrows/ hair/set lists/ terrible management/ etc].

I gave specific examples of belittling so I am not sure what it is that you do not understand.

 

And yes, I agree that her posts are mostly informative and always well-articulated. This, however, does not exclude the instances where she clearly tried to paint members of this forum as naive, ignorant, unempathetic and uncritical. As I said, I am up for neutral debates but all too often things get personal.

[mirage]

I'm curious to hear about the community now that the whole interview aired and more details were told by Celine, and also the doctor.

 

Verstuurd vanaf mijn SM-F721B met Tapatalk

 

 

[scielle]

I'm curious to hear about the community now that the whole interview aired and more details were told by Celine, and also the doctor.

Well, here’s one from a young woman from Montreal with SPS.

https://www.instagram.com/p/C8H3DfGOpsY/?igsh=ZmNiMXhpY2JqdnNl

[tshlw]

Well, here's one from a young woman from Montreal with SPS.

https://www.instagra...mNiMXhpY2JqdnNl

 

Wow that was very nice. Hope Celine does see it.

[scielle]

I gave specific examples of belittling so I am not sure what it is that you do not understand.

 

And I read them. I just don't see what you see in them; don't find them offensive or belittling.

[scielle]

Now that we know more about Celine's treatment plan from Hoda's podcast - it seems daunting. After reading so much about SPS treatments over these past few years, it's strange to her her talk about IVIG, GAD testing... all this medical jargon she has had to learn and that has become her daily reality.

 

I've been wondering how her doing ballet with Naomi and Pepe played into all this. Was she doing it in the hopes it would help? Or did it exacerbate things? Recall she had said at the time she was doing ballet 5 days a week... now she does PT instead.

[karatedude317]

Now that we know more about Celine's treatment plan from Hoda's podcast - it seems daunting. After reading so much about SPS treatments over these past few years, it's strange to her her talk about IVIG, GAD testing... all this medical jargon she has had to learn and that has become her daily reality.

 

I've been wondering how her doing ballet with Naomi and Pepe played into all this. Was she doing it in the hopes it would help? Or did it exacerbate things? Recall she had said at the time she was doing ballet 5 days a week... now she does PT instead.

The ballet was probably something that she thought would help. She also attributed ballet to the skeletal appearance that she had. It all makes sense now

[DionFanAlways]

I remember that clip from TTEOTW where she is describing what was happening with her voice and neck, who would've thought it was something so serious. Wow!

[LukeD]

And I read them. I just don't see what you see in them; don't find them offensive or belittling.

Ok, to each their own then.

[ewh12]

Just had this thought, were her IVF treatments and pregnancy issues the possible first clue something was wrong? I know we’ll never know for sure, but seems like , from what I’ve observed in her career, her body was always very active. Her metabolism was always fast and her body seemed to reject her from getting pregnant naturally. I have no scientific knowledge on this, but seems like her body was very efficient, and maybe in some cases, too efficient.

 

The human body is such a mysterious living form. There’s so much we don’t know.

 

 

[PuraVida]

Her doctor didn't say anything that we didn't already know, from what I've seen. But it's nice to put a name and a face. I wonder how often Celine goes to Colorado.

[CelinesDIVO5]

Just had this thought, were her IVF treatments and pregnancy issues the possible first clue something was wrong? I know we’ll never know for sure, but seems like , from what I’ve observed in her career, her body was always very active. Her metabolism was always fast and her body seemed to reject her from getting pregnant naturally. I have no scientific knowledge on this, but seems like her body was very efficient, and maybe in some cases, too efficient.

 

The human body is such a mysterious living form. There’s so much we don’t know.

 

I was under the impression that she couldn’t get pregnant naturally because Rene couldn’t produce after his cancer treatments. I thought they froze his sperm before his treatments so they could conceive later on. I mean, I could be wrong but that’s what I always thought their situation was.

[Céline RO]

I was under the impression that she couldn't get pregnant naturally because Rene couldn't produce after his cancer treatments. I thought they froze his sperm before his treatments so they could conceive later on. I mean, I could be wrong but that's what I always thought their situation was.

 

But weren’t they trying to conceive since 1994? That’s what Céline was saying at the time, and blaming her intense performing schedule for failure. I think the issue was always with her.

[Ukrfan]

But weren’t they trying to conceive since 1994? That’s what Céline was saying at the time, and blaming her intense performing schedule for failure. I think the issue was always with her.

 

While she did say that, I wonder when they actually tried. She couldn't get pregnant on tours, but also tours start preparing like a year in advance (booking venues, selling tickets etc.), and during this time I assume Celine and Rene didn't try (otherwise, imagine her getting pregnant before / while on tour - they would have to cancel so many shows).

 

But this leaves a very short period when they could be trying to have a baby as Celine was constantly on tours

[tshlw]

While she did say that, I wonder when they actually tried. She couldn't get pregnant on tours, but also tours start preparing like a year in advance (booking venues, selling tickets etc.), and during this time I assume Celine and Rene didn't try (otherwise, imagine her getting pregnant before / while on tour - they would have to cancel so many shows).

 

But this leaves a very short period when they could be trying to have a baby as Celine was constantly on tours

 

I think they were trying but she did say in an interview when on tour and busy like that her periods were not regular. So I think so many factors in why didn't get pregnant without help.

[scielle]

From SPSRF on FB: https://www.facebook.com/share/9fqnrqreaC7mHjgr/?mibextid=LQQJ4d

 

“Listen in as The SPSRF founder and volunteer, Tara Zier, joined the BBC to discuss living with SPS and Celine Dion's diagnosis's impact on driving awareness of SPS worldwide.

The segment starts at the 2:41 mark of the program linked below: https://www.bbc.co.uk/programmes/m0020134 “

 

Also -

“We're excited to share that Dr. Amanda Piquet, a member of The SPSRF Medical Advisory Board, was recently highlighted as the doctor treating Celine Dion since her diagnosis with SPS over two years ago.

We're so fortunate to have the best of the best involved on our Medical Advisory Board, leading our research efforts! Please read the article linked below highlighting the work Dr. Piquet and her team at the University of Colorado are leading for Celine Dion.”

 

Also posted this:

Edited June 14, 2024 at 06:37 PM by scielle

[PuraVida]

Her doctor kind of reminds me of Clarice Starling

[tshlw]

From SPSRF on FB: https://www.facebook...mibextid=LQQJ4d

 

"Listen in as The SPSRF founder and volunteer, Tara Zier, joined the BBC to discuss living with SPS and Celine Dion's diagnosis's impact on driving awareness of SPS worldwide.

The segment starts at the 2:41 mark of the program linked below: https://www.bbc.co.u...rammes/m0020134 "

 

Also -

"We're excited to share that Dr. Amanda Piquet, a member of The SPSRF Medical Advisory Board, was recently highlighted as the doctor treating Celine Dion since her diagnosis with SPS over two years ago.

We're so fortunate to have the best of the best involved on our Medical Advisory Board, leading our research efforts! Please read the article linked below highlighting the work Dr. Piquet and her team at the University of Colorado are leading for Celine Dion."

 

Also posted this:

 

Thanks just for clarification cause I got confused lol time is 02:41:03 so 2 hr 41 mins in not 2min and 41 secs.