Céline has Stiff-Person Syndrome

[scielle]

Perhaps while in Colorado, rather than seeing Dr. Schofield, she was actually there to be treated by Dr. Nash. The Colorado stay was confirmed by Claudette (if you consider that a confirmation...) but the doctor name was purely from Closer, which of course is known for publishing all sorts of conjectures on a regular basis.

But, now that Dr Burt's HSCT program at Northwestern is no more, it seems Dr. Nash's in Colorado (along with fellow researchers in Seattle, part of the same study) may be the only program currently doing HSCTs for SPS? https://bloodcanceri...ne-diseases.dot

I've come across several blogs/ posts from people currently undergoing this treatment with him for either MS or SPS. Dr. Nash's protocol is more aggressive than Dr. Burt's, as it uses very high dose chemo so it really knocks people out for a long while.

 

For those interested in the research literature, this is new from Dr Nash & others: https://www.neurology.org/doi/10.1212/NXI.0000000000200197

Not a study, just a single case report, but still.

[Zofia]

For those interested in the research literature, this is new from Dr Nash & others: https://www.neurolog...000000000200197

Not a study, just a single case report, but still.

 

Eh, I still haven't given up hope that Céline will qualify for HSCT. She certainly has the courage to take the risk, and that is the only hope for now - not for the unpredictable "some better days," but for full remission and resolution of all symptoms of the disease...

 

Does the unusually deafening silence of recent months - and even the channels of leaks have closed, even Claudette has gone quiet - mean deterioration (the worst-case scenario), gradual adaptation to new realities and a refocusing of life goals (the not-so-bad option) or such aggressive therapy as HSCT? Maybe we will find out soon.

[joaofilho]

I'm worried about all this silence, we didn't have any Christmas messages, I'm worried about it getting worse.

[souriredezora]

I'm worried about all this silence, we didn't have any Christmas messages, I'm worried about it getting worse.

 

me too... (and everyone else here of course)

i can't believe this is happening to her and that we don't hear anything still...

i reread all her biographies that i have (french and english), looking for clues... looking for something, some kind of consolation

 

yesterday i was listening to this

and when i heard the line "when I hear you breathe" i almost burst into tears.

[Abodi2002]

Not completely sure what to expect from this title but I guess we’ll find out in a few hours.

[comingback]

Not completely sure what to expect from this title but I guess we’ll find out in a few hours.

 

It's a Canadian docu from November 2023. There was nothing new...

[scielle]

Here’s the W5 story from earlier today (and yes, it’s the Novoo doc from a couple months ago:

Edited January 28, 2024 at 02:38 AM by scielle

[catlovergirl1982]

How can you get pregnant at almost 60 years old. It’s ridiculous

 

Omg yes exactly 100%!! Thank you, thank you, thank you, yay there are a few sensible & practical thinking fans left in the world who do not believe every single rumor that they read on the internet!!

 

OMG at her age, to be PREGNANT? When the woman is entering her late 50s, with 60 peeking CLOSELY around the corner & waving hello at her lol, people would really believe this stream of BS that Celine had "made up SPS to hide a pregnancy", COME ONNNNNN!

 

One, at her age it would literally be IMPOSSIBLE for Celine to get pregnant! How many late 50s/nearly 60 year old women (which she will be in only 4 years, not too much longer from now,) do you know of get pregnant? NONE! So Celine being pregnant would be NO MORE HAPPENING than any of us seeing the Easter bunny, Godzilla, & the Lockness Monster having a tea party lol haha... Omg this forum, & the internet in general, crack me up lol. The crazy crap people will believe nowadays, some people will believe anything I guess lol hahahahahaha.

Edited January 31, 2024 at 03:16 AM by catlovergirl1982

[catlovergirl1982]

This is absolutely ridiculous. IF it were true What would she do? Hide the baby forever? Lie to the World and her fans forever? Sacrifice het Career for no Reason? Abuse people who actually suffer from SPS? And why not just make up a disease which is actually not incurable? That is in addition to the Fact that she will be 56 in a few months. Please just think for a second. Some people really have either no Dignity or brainactivity. Usually there’s a correlation.

 

 

**clap clap clap, applause applause applause** YESSSS EXACTLY!! Celine is almost 56 years old, in just a few years she will be 60! So how in the frack can she get pregnant?! Come on people, lets use something called common sense, with OUR BRAINS!

 

For one thing, do any of you all remember Celine struggling with the pregnancies of the children she already has, especially with the twins! Remember in 2009, Celine went through about what, 6 rounds of IVF, & also had 2 miscarriages, before the twins were born! & she was in her early 40s back then! & having kids in your 40s is pushing it! I know because I am in my early 40s, I have 2 kids when I was in my 30s & both pregnancies & births of my girls were rough, especially the 2nd birth (because I have underlying health problems that run in my family, my mother went through the same when me & my twin sister were born, my mother had a rough birth with me & my sister as well,) I love my kids with all of my heart & I have NO REGRETS of having them at all, but... at my age now, in my 40s, I WOULD NOT try to get pregnant again, it would be so risky for me, & the potential baby as well, & that would be a risk that is a HARD NOOOO for me to do, as I would not want to leave my kids & family behind.

 

& we all know Celine would also REALLY NOT want to risk her life either by having a pregnancy at 55-56 years old, she has 3 boys (well one GROWN MAN, & 2 teenagers lol, but still,) that I am sure she WOULD NEVER risk leaving behind, especially as RC, Eddy, & Nelson have already lost their father, Celine would not be crazy or silly enough to purposely do that to her kids, or to the rest of her family.

 

Plus 2. She would also NEVER make up having an illness, like you said, it would be huge slap in the face to the SPS community as it is a real disorder & there are people who are suffering from it (& had even died from it, although there has not been that many deaths that we know of from that disorder, but there are a few deaths that have been mentioned in online articles & videos,) & it would be a huge disservice to all those poor people who are actually suffering & have no hope for a cure or even relief from this cruel & progressive disorder. & we all know Celine much better than that, we all know Celine is not the type of person to do that, she is such a good hearted person & never lie to the world, & to her loved ones like that! Come on, this is Celine we are talking about! This is the same woman who has been singing Love songs all her life now! Come on now folks!

Edited January 31, 2024 at 04:14 AM by catlovergirl1982

[Tricey3115]

God make it stop

[scielle]

Do we think she had an HSCT?

It's normally reserved for advanced cases for patients who are non-responsive to other treatments, and doctors don't normally go there until taking the time to try all other potential therapies. Plus it's obviously the "nuclear option", with at least one study terminated due lack of efficacy and potential serious complications.

But on the other hand, if Claudette is to be believed she was in Denver around this time last year, and CBCI in Colorado is one of the few places that currently does HSCTs for SPS.

From the pics we saw a couple months ago though, that looked to me like her real hair (at its usual length) and if she had the treatment I don't think she'd get her hair back so quickly? Thoughts?

The "lengths she has gone to continue performing for her beloved and loyal fans" line in the press release the other day has me wondering.

Edited February 1, 2024 at 12:47 PM by scielle

[souriredezora]

Omg yes exactly 100%!! Thank you, thank you, thank you, yay there are a few sensible & practical thinking fans left in the world who do not believe every single rumor that they read on the internet!!

 

OMG at her age, to be PREGNANT? When the woman is entering her late 50s, with 60 peeking CLOSELY around the corner & waving hello at her lol, people would really believe this stream of BS that Celine had "made up SPS to hide a pregnancy", COME ONNNNNN!

 

One, at her age it would literally be IMPOSSIBLE for Celine to get pregnant! How many late 50s/nearly 60 year old women (which she will be in only 4 years, not too much longer from now,) do you know of get pregnant? NONE! So Celine being pregnant would be NO MORE HAPPENING than any of us seeing the Easter bunny, Godzilla, & the Lockness Monster having a tea party lol haha... Omg this forum, & the internet in general, crack me up lol. The crazy crap people will believe nowadays, some people will believe anything I guess lol hahahahahaha.

 

 

speaking of pregnancy.

i was just looking at the photos of Celine and her family yesterday

and i realized it's 5 - her, twins, RC and Rene

isn't that fascinating?

[incognito]

Do we think she had an HSCT?

It's normally reserved for advanced cases for patients who are non-responsive to other treatments, and doctors don't normally go there until taking the time to try all other potential therapies. Plus it's obviously the "nuclear option", with at least one study terminated due lack of efficacy and potential serious complications.

But on the other hand, if Claudette is to be believed she was in Denver around this time last year, and CBCI in Colorado is one of the few places that currently does HSCTs for SPS.

From the pics we saw a couple months ago though, that looked to me like her real hair (at its usual length) and if she had the treatment I don't think she'd get her hair back so quickly? Thoughts?

The "lengths she has gone to continue performing for her beloved and loyal fans" line in the press release the other day has me wondering.

 

Not everyone loses their hair with chemotherapy. If you are diligent with cooling caps you stand a chance to keep your hair.

 

 

[Nmj]

Do we think she had an HSCT?

It's normally reserved for advanced cases for patients who are non-responsive to other treatments, and doctors don't normally go there until taking the time to try all other potential therapies. Plus it's obviously the "nuclear option", with at least one study terminated due lack of efficacy and potential serious complications.

But on the other hand, if Claudette is to be believed she was in Denver around this time last year, and CBCI in Colorado is one of the few places that currently does HSCTs for SPS.

From the pics we saw a couple months ago though, that looked to me like her real hair (at its usual length) and if she had the treatment I don't think she'd get her hair back so quickly? Thoughts?

The "lengths she has gone to continue performing for her beloved and loyal fans" line in the press release the other day has me wondering.

 

I’d assume we will see Celine and the “lengths she has gone to continue performing” in the way of them showing her doing physical therapy and other basic things… but I hope Celine did get to a place where she has minimal spasm and even none at all.

[LukeD]

The fact that I am going to see her fight this disease brings tears to my eyes. I am feeling sorry for what she is going through but also proud of her.

[Zofia]

Do we think she had an HSCT?

It's normally reserved for advanced cases for patients who are non-responsive to other treatments, and doctors don't normally go there until taking the time to try all other potential therapies. Plus it's obviously the "nuclear option", with at least one study terminated due lack of efficacy and potential serious complications.

But on the other hand, if Claudette is to be believed she was in Denver around this time last year, and CBCI in Colorado is one of the few places that currently does HSCTs for SPS.

From the pics we saw a couple months ago though, that looked to me like her real hair (at its usual length) and if she had the treatment I don't think she'd get her hair back so quickly? Thoughts?

The "lengths she has gone to continue performing for her beloved and loyal fans" line in the press release the other day has me wondering.

 

Great question; I've been asking myself this ever since I read everything I could about treatment methods for SPS.

 

What's in favor? 1. Denver, a surprising location from the start (instead of Rochester or Baltimore), 2. Rumors circulating in the tabloids in the first months of 2023 - about "last-chance treatment", the results of which were supposed to be visible after 9 months, 3. Complete silence for almost a year, until the end of October, 4. Céline's great form on the recordings on the match and concert.

 

What speaks against? 1. communications from Claudette, who unexpectedly changed her tone and has been talking about her sister's illness with concern and worry since the summer (of course, one can assume that she knew nothing about the radical treatment, but I have the impression that Claudette is now in fairly regular phone contact with the staff in Henderson and tells the media what she can/should say). 2. in the summer, Céline was contacted by Jacques Veneruso - he said she was tired and her condition was "neither getting worse nor better." 3. the decision to expose herself to infection without a mask as early as October, 4. the decision not to extend work on the film until her eventual return to the stage. If her return was a real, imminent prospect, wouldn't the documentary have been extended for such epic or dramatic moments? 5. Céline's last post with the announcement of the film, emphasizing learning how to live with the disease and awareness rather than the hope of recovery and new therapies. For me, "lengths she has gone" is more associated with the daily grind of physical therapy, IVIG-type treatments, voice exercises, etc.

 

I think that if she underwent HSCT, it was with only good, but not the best results. That's why I prefer to think that, as suggested by most researchers (because the procedures for SPS are not there), they keep this method in reserve as a last line of defense in case of strong disease progression.

[joaofilho]

We will have most of the answers in the documentary. It is a rare disease, there is no treatment, stem cell transplantation is very aggressive, but if doctors believe it can put the disease into remission, that is very good, we don't know if she did it or not.

We will have most of the answers in the documentary. It is a rare disease, there is no treatment, stem cell transplantation is very aggressive, but if doctors believe it can put the disease into remission, that is very good, we don't know if she did it or not.

[scielle]

4. the decision not to extend work on the film until her eventual return to the stage. If her return was a real, imminent prospect, wouldn't the documentary have been extended for such epic or dramatic moments?

Yeah, that, for me, was the biggest "reality check" of this week's press release.

They clearly gave up waiting to follow her back on stage. Much like Love Again, with its many delays, and Sony eventually throwing in the towel and releasing it without Celine's participation.

 

The doc was in pre-production in fall 2021, and was initially to be a career retrospective. In early 2022, Vermillion was hiring a French-speaking associate producer for a "year-long" production. (I had posted about it at the time, but the posting is actually still online here.) They had hired someone who was "coordinating and translating archival footage of Celine" in the spring of 2022. Another producer's profile has the project dates listed as 9/21 - 10/23.

 

The press release mentions the film follows Celine for around a year, so I think actual filming/ production was from summer/ fall 2022 - summer/ fall 2023.

At some point in 2022 Celine got her diagnosis, but I think for some time after, they still held out hope of making the tour happen, until it became clear that's just not tenable. And around the time of Courage cancellation in the spring, I think it became about how they "end the story" for the purposes of this film, given they're clearly not following her rehearsals and return to the stage.

 

They started out making a career retrospective film, then through necessity, had to pivot to something completely different. Must have been a wild ride, not just for Celine but for all involved in the production. Question is: How is it going to end?

Edited February 2, 2024 at 01:31 PM by scielle

[Zofia]

Yeah, that, for me, was the biggest "reality check" of this week's press release.

They clearly gave up waiting to follow her back on stage. Much like Love Again, with its many delays, and Sony eventually throwing in the towel and releasing it without Celine's participation.

 

The doc was in pre-production in fall 2021, and was initially to be a career retrospective. In early 2022, Vermillion was hiring a French-speaking associate producer for a "year-long" production. (I had posted about it at the time, but the posting is actually still online here.) They had hired someone who was "coordinating and translating archival footage of Celine" in the spring of 2022. Another producer's profile has the project dates listed as 9/21 - 10/23.

 

The press release mentions the film follows Celine for around a year, so I think actual filming/ production was from summer/ fall 2022 - summer/ fall 2023.

At some point in 2022 Celine got her diagnosis, but I think for some time after, they still held out hope of making the tour happen, until it became clear that's just not tenable. And around the time of Courage cancellation in the spring, I think it became about how they "end the story" for the purposes of this film, given they're clearly not following her rehearsals and return to the stage.

 

They started out making a career retrospective film, then through necessity, had to pivot to something completely different. Must have been a wild ride, not just for Celine but for all involved in the production. Question is: How is it going to end?

 

Powerful turns behind us and probably ahead of us. Adapting to the reality of all has cost/cost a lot of time. (BTW, in the early days in the Quebec media, I think it was again Denise Bombardier who was the only one to break out of this cautious optimism. Have you ever listened to this interview? https://player.fm/series/richard-martineau/celine-dion-elle-est-enfermee-dans-la-solitude-dit-denise-bombardier)

 

We haven't yet seen Irene's documentary, and already from your recapitulation we can see how passionate (though perhaps dramatic) the “Making of” film would be...

[tshlw]

Yeah, that, for me, was the biggest "reality check" of this week's press release.

They clearly gave up waiting to follow her back on stage. Much like Love Again, with its many delays, and Sony eventually throwing in the towel and releasing it without Celine's participation.

 

The doc was in pre-production in fall 2021, and was initially to be a career retrospective. In early 2022, Vermillion was hiring a French-speaking associate producer for a "year-long" production. (I had posted about it at the time, but the posting is actually still online here.) They had hired someone who was "coordinating and translating archival footage of Celine" in the spring of 2022. Another producer's profile has the project dates listed as 9/21 - 10/23.

 

The press release mentions the film follows Celine for around a year, so I think actual filming/ production was from summer/ fall 2022 - summer/ fall 2023.

At some point in 2022 Celine got her diagnosis, but I think for some time after, they still held out hope of making the tour happen, until it became clear that's just not tenable. And around the time of Courage cancellation in the spring, I think it became about how they "end the story" for the purposes of this film, given they're clearly not following her rehearsals and return to the stage.

 

They started out making a career retrospective film, then through necessity, had to pivot to something completely different. Must have been a wild ride, not just for Celine but for all involved in the production. Question is: How is it going to end?

 

I agree fact not waiting till returns to stage or even an announcement of a return makes me feel while she is still working to get back not there yet. Think film ends with those two outings this past fall to show she is not letting the disease stop her and she is not bed ridden or any of those things.

[takeachance]

Really looking forward to seeing this documentary just to see/know how she has been doing. We have been all wo worried about her and have missed her. Does anyone know when this is coming out?

[Peppercorn1991]

Really looking forward to seeing this documentary just to see/know how she has been doing. We have been all wo worried about her and have missed her. Does anyone know when this is coming out?

 

No date yet.

 

Kev x

[scielle]

2. in the summer, Céline was contacted by Jacques Veneruso - he said she was tired and her condition was "neither getting worse nor better." 3. the decision to expose herself to infection without a mask as early as October, 4. the decision not to extend work on the film until her eventual return to the stage. If her return was a real, imminent prospect, wouldn't the documentary have been extended for such epic or dramatic moments?

 

On #2, I think there was also a comment from her brother Jacques, around the time of that Pour Toi Celine concert, saying her condition doesn't change from week to week.

3, I thought it's 100 of quarantine post transplant? If she had it early in the year, one would think going out in public in late Oct would be fine?

4, I think there are 2 eventualities here. Either a) they decided to close out the doc because it became clear that learning to manage the disease and get back to work in any shape will take a long time, maybe years, if ever, and Sony/Celine decided they needed something out there to tie us over, or b ) they're trying to use the doc as lead up to some kind of return to public life.

I suspect we'll have to wait a little while yet for the actual release - I'm thinking fall is likely - and at that point perhaps she's in a good enough place.

 

Anyway, came here to say Dr Piquet and Dr Nash (both of Colorado, and both of whom specialize in autoimmune neurological diseases) are doing a seminar on "stem cells in neurology" (incl. SPS) in April, so there's clearly active research going on in CO on this type of treatment.

 

 

Edited February 4, 2024 at 10:57 PM by scielle

[Zofia]

On #2, I think there was also a comment from her brother Jacques, around the time of that Pour Toi Celine concert, saying her condition doesn't change from week to week.

3, I thought it's 100 of quarantine post transplant? If she had it early in the year, one would think going out in public in late Oct would be fine?

4, I think there are 2 eventualities here. Either a) they decided to close out the doc because it became clear that learning to manage the disease and get back to work in any shape will take a long time, maybe years, if ever, and Sony/Celine decided they needed something out there to tie us over, or b ) they're trying to use the doc as lead up to some kind of return to public life.

I suspect we'll have to wait a little while yet for the actual release - I'm thinking fall is likely - and at that point perhaps she's in a good enough place.

 

Anyway, came here to say Dr Piquet and Dr Nash (both of Colorado, and both of whom specialize in autoimmune neurological diseases) are doing a seminar on "stem cells in neurology" (incl. SPS) in April, so there's clearly active research going on in CO on this type of treatment.

 

2 - This is true, although Jacques - unlike Claudette - was quite unequivocally optimistic in his announcement; he claimed that a positive treatment outcome "is a matter of time." I recall, however, that in May Dr. Jorgensen of Montpellier confirmed that "relatives" of Céline had contacted him, in the hope of getting help through CAR-T treatment. Of course, it can't be ruled out that they were trying to knock on all the doors, in case the transplant didn't have the expected result.

 

3 - Right, although the lack of a mask at the rather, however, crowded meetings (with the whole team, and then in the crowd at the concert) surprised me a little. But maybe she just had good enough test results and felt confident.

 

4 - Who knows, maybe Céline hopes to close a phase with this documentary before opening another. It took 12-26 to 56 months to evaluate the status of SPS patients after HSCT. If it's after, let's hope it's successful. The results in recent years seem really encouraging (there's a brief summary in this article from a year ago: https://www.mdpi.com/2306-5354/10/2/176), although some doctors are still quite cautious about using this method in SPS (here's an interesting update-type article from September 2023, already including a mention of Céline and a brief discussion of the new treatments; BTW this is another publication whose authors recommend the early use of immunologic treatments in SPS patients, contrary to previous practice: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10525659/)

 

The information about Dr. Piquet and Dr. Nash is very interesting, clearly something is starting to happen. I hope that she herself can benefit from the “Celine effect” in SPS therapy, because it is virtually certain already that future patients will benefit from it.

 

I'm thinking now about how quickly she must have decided that she would make her battle with the disease public, accepting the presence of Irene's camera at such a sensitive moment in her life. Since the camera accompanied her for more than a year, in fact almost immediately after hearing the diagnosis, which turned her life upside down, she apparently was ready to say - OK, you can film it... "Courage" was indeed a prophetic title.

[scielle]

I'm thinking now about how quickly she must have decided that she would make her battle with the disease public, accepting the presence of Irene's camera at such a sensitive moment in her life. Since the camera accompanied her for more than a year, in fact almost immediately after hearing the diagnosis, which turned her life upside down, she apparently was ready to say - OK, you can film it... "Courage" was indeed a prophetic title.

Indeed.

Let’s not forget, she was one of the first celebrities to speak openly about her IVF at a time when it was still a very hush-hush topic. We don’t think about it now, it’s so common and openly discussed, but for that time, it really mattered. A lot of women had said how much it helped them, for it to be an open topic of conversation.

She knows she has a platform and knows how to use it even if it means making herself very vulnerable.

[jpatdeleon09]

..It’s getting worst huh? LOL Well, Surprise Surprise

 

That’s why stick to Celine’s update. And this called Faith…..

Edited February 5, 2024 at 04:18 AM by jpatdeleon09

[Nmj]

https://www.reviewjournal.com/entertainment/entertainment-columns/kats/stunner-celine-dion-presents-taylor-swift-award-at-grammys-2993583/

[Dreamy]

How amazing is Céline! So proud of her, she is so brave and we have the proof here.

 

For those that were worried about rumors. Here she is, doing well and as she said the best is yet to come.

 

I only can say that I'm glad and I love her so much.

 

She is our heroine . She knows we love her and she feels it.. we should to keep doing it.

Edited February 5, 2024 at 11:36 AM by Dreamy

[Zofia]

How amazing is Céline! So proud of her, she is so brave and we have the proof here.

 

For those that were worried about rumors. Here she is, doing well and as she said the best is yet to come.

 

I only can say that I'm glad and I love her so much.

 

She is our heroine . She knows we love her and she feels it.. we should to keep doing it.

 

I think that most (at least in this thread) are not worried about rumors, but about the diagnosis that she herself has revealed to the world. And in addition to realistic reasons to worry, we've also been writing from the beginning (at least in this thread) about realistic reasons for hope.

 

If we didn't love her, there would be neither worry nor hope.

 

Fortunately, today hope is greater than ever

[Zofia]

Today, with the enthusiasm generated by Céline's appearance at the Grammy Awards, I decided to quote some comments from the SPS community. Many people are uncomfortable with the media fuss and hysterical news about the condition of Céline, who, according to the media, is almost dying, and then dazzles everyone at the gala. Many quoted bitterly today a phrase that circulated in the tabloids a few months ago: "she has the best care that money can buy." Let's understand the people who can't afford a physiotherapist or nurse, who spend years dealing with insurance companies refusing to reimburse them for necessary treatments, who have been hearing arrogant comments at clinics and hospitals for twenty years: "You made up this disease, it's a problem in your head," until suddenly today they hear from a nurse: "Oh, you have the same thing as Céline Dion." Their frustration is not surprising.

 

One participant in the forum discussion wrote: „Saw Celine on the Grammys last night. This is the problem. Now I have to deal with people who have seen her on the Grammys and are saying to me “well Céline Dion got better. What can you do? Can’t you do the same thing she’s doing so that you can be up and walking as well?” I hope she will come out with some less sugarcoated appearances and statements— in some ways this has set us back rather than moved us forward.” Others noted that Michael J. Fox is at least doing something to improve the lot of Parkinson's patients.

 

Perhaps especially because I understand their frustration, I was so moved by the opposing views. I'll cite three; I think it's worth listening to the voices "from inside" as well:

• „Michael J Fox did those things after he came to terms with everything that was going on. He was diagnosed in 1991 and didn’t start his foundation until 2000. Celine went public with this just over a year ago. She is probably still coming to terms with all of it. And as for what people say about her, I doubt her publicity people want people telling her fans that she will never be the same. It’s what publicists do, they spin their own story.”
  

• “The ways in which this illness affects each of us vary. Who cares if she can afford to “buy her treatment”, given her financial situation? We all follow the same therapeutic plan, I think; we simply use various methods. From what I understand, she receives physical therapy from a sports medicine doctor, participates in hydrotherapy, and does a lot of other things that money may or may not be able to pay for. Despite everything, she serves as an inspiration. /…/ I can't speak for others, but despite my experiences and my financial situation, I refuse to let my illness make me bitter or make me feel jealous of others who are getting better and effectively managing their symptoms. Celine looks amazing, and I'm glad that despite her wealth, she's able to achieve inner serenity.”
  

• “Celine may be rich & can afford the care some of us can't. This shouldn't be held against her. She brought our disease out to the public. That alone is progress. No one, even many doctors, did not know what it was. What special treatment is she getting? She's getting the same as all of us. Maybe she can be seen faster but that is not curing her. She may not be as progressing as fast as some of us. Should she be punished for this./…/ Do we know what phenotype of the disease she has? I'm in one of the mildest form but I couldn't work dropping instruments yet I still can do a lot of physical activities at my age of 72 that other normal people can't do at 20. People look at me & see a normal person. They don't see me when I'm in full spasms & have to stay in bed. Yes, many of you are worse than others but don't condemn their luck. Money can't buy happiness. I'm sure she would trade all her money not to have SPS. She is a start to bring this out to the public including the medical fields. Why was it thought to be 1 in a million & now it's 1-2 in a million? It's not because more people are getting it but doctors are now looking for it. Celine & the work Tara Zier is doing is helping all of us but, it takes time. Michael J Fox is tremendous in what he does but Parkison was a well known disease when he was dx so people could relate to him. This is a start & we all should be thankful for what she so bravely has done. She could have just retired & left public lights leaving SPS in the dark.”