Jump to content

Céline has Stiff-Person Syndrome


Recommended Posts

Posted

Thank you.

I had noticed the silence in the SPS community, and it’s understandable. She has a lot of other people’s hopes and expectations on her shoulders.

Posted

I had noticed the silence in the SPS community, and it's understandable. She has a lot of other people's hopes and expectations on her shoulders.

 

Yes, it must be difficult. Maybe she manages not to think about it and concentrate on her own task? At least she doesn't spout clichés like “I'm with you, we share the same fate.”

 

People in this situation usually take many years to come to grips with their new identity. And only in some is born the desire to do something for the community to which they belong against their will. The case of Michael J. Fox says a lot.

 

It's going to be a long journey, let's hope she has enough luck and strength.

Posted

GMA coverage this morning as their cover story, by Deborah Robert’s:

 

  • Like 1
Posted

GMA coverage this morning as their cover story, by Deborah Robert’s:

 

 

GMA really really loves her, don't they. Any time there's any Celine news, even if minor, GMA will be on it. I believe one of the morning show producers is a major Celine fan (as are at least some of the hosts).

  • Like 7
Posted (edited)

 

 

GMA really really loves her, don't they. Any time there's any Celine news, even if minor, GMA will be on it. I believe one of the morning show producers is a major Celine fan (as are at least some of the hosts).

 

I think Deborah and Robin are fans.

 

https://www.instagram.com/p/ByOeetjndjj/?igsh=YmtiNGZocjBvNndo

 

https://www.instagram.com/stories/debrobertsabc/3353278259871437180?utm_source=ig_story_item_share&igsh=MTl2b3d0b3N3d2ludQ==

 

And I hope she does give a sit down to them when the doc releases.

Edited by Nmj
  • Like 1
  • 2 weeks later...
Posted
So I’ve just noticed that many pictures and reels have been removed from Celine’s Instagram, including the one when she announced that she has SPS.

Tournée Européenne in Paris (December 1, 2013)

Céline Dion Live 2016 in Antwerp (June 20, 2016)

Céline Dion Live 2017 in Birmingham (July 27, 2017)

Posted

So I’ve just noticed that many pictures and reels have been removed from Celine’s Instagram, including the one when she announced that she has SPS.

 

I wonder why

Posted
Maybe they want to set the stage for a fresh start, sell tickets without people being afraid that she will cancel because of her illness
  • Like 1
post-5889-0-11519200-1681245149_thumb.jpg

Posted

I don't think anyone would scroll all the way down on celine's instagram before deciding whether to buy tickets or not. And everyone already knows of her sps diagnosis so there's no point in deleting/archiving anything.

 

Also, posts about her first selfie, or her Halloween snacks or family photos have nothing to do with sps so this can't be the reason they were deleted/archived.

 

It's quite strange.

Posted

Its as if anything remotely personal has been removed. Only the work stuff is there...

 

Sent from my SM-S916B using Tapatalk

 

 

Posted

Its as if anything remotely personal has been removed. Only the work stuff is there...

 

Sent from my SM-S916B using Tapatalk

 

Except left post for the 6th anniversary of Rene's death. Her concert when announced her mom's death and post about Rene getting ADSIQ after his passing. So left some personal things why feels so random.

  • Like 1

'I am, in life and death, the woman of only one man.'

Celine Dion My Story, My Dream

Posted
I have never been fond of Celine's Instagram page so some editing is welcome. I also appreciate to see them doing SOMETHING for once! Who knows, maybe they got a plan!
  • Like 4
Posted (edited)

If anyone is able to donate to this SPS patient with insurance problems.. please read her story and explanation:

 

https://gofund.me/b24f9b70

Edited by Nmj
  • 2 weeks later...
Posted (edited)
SPS seems like the new name for Parkinson's and side effects of medication's. All of the three share the same symtoms with unclear etiology. Edited by GoldenLeaf
  • Like 1
normal_one-heart-7.jpg

Posted

SPS seems like the new name for Parkinson's and side effects of medication's. All of the three share the same symtoms with unclear etiology.

 

In short: no, it is not.

 

Diseases giving somewhat similar symptoms are dozens, if not hundreds. Diseases of unknown etiology - thousands.

 

But the pathogenesis of the two diseases is quite different.

 

SPS usually has an autoimmune basis, and its symptoms somewhat resemble tetanus (because their pathomechanism is similar, except that in tetanus the disease process is triggered by bacterial bacilli, and in SPS by defective antibodies).

 

Parkinson's disease is caused by the loss of nerve cells in the part of the brain responsible for producing dopamine.

  • Like 1
Posted
i keep remembering in one of her documentaries (i think it was "through the eyes of the world") she fell on stage , and then she said not to worry "these legs are made of steel"...
je chanterai, je chanterai toujours
Posted

i keep remembering in one of her documentaries (i think it was "through the eyes of the world") she fell on stage , and then she said not to worry "these legs are made of steel"...

 

If that’s from the taking chances tour, she slipped and fell quite a bit because of the slippery stage

  • Like 1
Posted

From Dr. Newsome - https://www.newsweek.com/celine-dion-stiff-person-syndrome-rare-disease-1905595

 

“Award-winning singer Celine Dion is opening up about her diagnosis with stiff person syndrome in her new documentary and medical professionals are praising her for "coming out."

[…]

Dr. Scott Newsome, director of the Stiff Person Syndrome Center at Johns Hopkins, spoke to Newsweek about the struggles people with the syndrome face. He explained that there is actually a spectrum of SPS disorders and they all have different effects on the body.

 

"The majority of people have mobility problems," Newsome said. "Many people have excruciating muscle spasms that can lead to falls."

 

Newsome was sad to hear about Dion's SPS diagnosis.

 

"My heart went out to her," Newsome said. "I give her a tremendous amount of credit for coming out, because I can imagine for someone like herself in the limelight that she's in, how difficult that must be."

 

He said he believes Dion's diagnosis helped to put SPS on the map for many people.

 

"I think the momentum is moving in a really good direction where there are more people that are aware of this condition globally," Newsome said.“

 

 

  • Like 4
Posted

Thanks. A lot has been written about Dr. Newsom by patients in newsgroups, complaining that he only accepts cases with an anti-GAD test of at least 5,000 (while there are plenty of patients with lower levels of this antibody, and some show none at all). The doctor himself denied this at a recent symposium, and together with Dr. Duarte Machado, invited doctors from regions where SPS is unknown to collaborate. And this is the other side of the “awareness” coin: more and more people suspect (largely due to Céline) that they have symptoms of SPS, but the number of doctors familiar with the disease is growing more slowly than the number of patients. After the film's release, this phenomenon will increase unimaginably.

 

I reflect on what Céline said about her new role vis-à-vis the patient community when she listed in one breath the mission of “singer, spokesperson for SPS, mother.” Whatever her plans, I read this as an important part of her amazing mental work done recently: she doesn't deny, she doesn't repress, she doesn't fixate on the pursuit of a miracle, she just says: “it's still me, now with SPS, as much as possible, I will go on”.

 

If anyone is curious about the reaction of the patient community to media coverage of the documentary, I quote a few:

 

«The thing I fear is that she has access to several different therapies that not most people are and you're gonna look at her rapid recovery as an expectation for all people who suffer from this rare disorder and that's not fair. /.../ Insurance for the average person has limits and restrictions as well as pre authorization and out right denials whereas someone who has ALOT of money and knows alot of people wouldn't struggle with those type issues. There has been alot of speculation about what is available to her but its just that speculation. The realistic point is not everyone is famous and can pull out money and clinical trials and unlimited resources so my hope is that the overall suffering and recovery availability isn't focused on what she has available to her and at her disposal. »

 

« NBC is doing a 1hr special on her this week but I doubt there’s a single mention on the difficulty most of us face even getting a proper diagnosis or medication from a doctor who understands this disorder. »

 

«I was hoping she’d be ok. I don’t think I can watch the movie just yet as I’m still overwhelmed by my own discovery of this having suffered for many years and not been diagnosed till recently. I hope that feeling passes. Celine is loved by many and has a great voice. Peace be to her. »

 

«I don't think it's worthwhile to be worried about anything in this movie. People will know about the illness, that's good. Everything else will be as it will be. We cannot control what they do. It's still just one movie, not a major breakthrough in medicine. »

 

«The fact she is rich, and still suffering is scary. I felt like her standing ovations for going to a hockey game with her kids was unfair. I was destroying my body, using a wheelchair , if needed to feed my family and have at least the main level of my home look okay. But, her sisters have stated how much they have to help her. How rough it is on her. Now, if I say I have Stiff Person Syndrome, at least 1 out of 10 ppl will say “Oh, the Celine Dion disease”. I too wish they would go over the financial costs. Especially here in the USA. $30k/month for IVIG (that’s total cost, amount varies dependable on your deductible and copay. Or, if you have insurance. I plan to watch because it looks like she intends to keep it real. No matter how much money, or how famous a person is, nobody should have to deal with this awful disease. And, “looking fine” makes it even worse. People think you are a hypochondriac or something. I feel like I need to carry my hospital bills, infusion bills, and doctors note saying I have a real disease. It’s just really rare. »

 

Let me quote, besides, an important testimony of one of the patients (I read a lot of them, but this impressed me) - she worked in a medical environment and, as she writes, has excellent medical care. She also stresses the importance of physical therapy. So this is what life with this disease can be like despite great care:

 

« I was diagnosed in 2018 but had been dealing with it much longer. Cramping clubbing hands that I couldn’t control. The stinging and tingling leave the hands cold and without feeling. A voice that went in and out a deep gravely sounding voice sometimes disappearing for days. Difficulty swallowing, like things getting stuck. That would make me panic a bit b/c I thought I would choke. Very cold food causing brain freeze down my throat and even into the esophagus… that spasm last a bit longer than the average brain freeze and also triggers torso spasms. Torso spasms triggered by food or abrupt noises. But can also be full body spasms starting at the toes and going full on body like a tsunami. Eyes that close due to sensory issues like a shower or air from the ac blowing in my face. Oh those feet and legs, the feet and toes curl and become like rebar or steel. The ankle can sprain itself while I’m sitting down. I refer to that as a brain sprain. The calves are like bricks, and while some around may not be familiar with the nature of the disease and say stand on it or shake it off, that’s really not possible and a bit dangerous due to falls or tearing/spraining. My knees can be difficult to bend and straighten and the thighs act like I’ve pulled hamstrings. Falls from the above have caused sprained ankles busted knees and wrists. My head has torqued down to the left resting on my collarbone. That’s excruciating! Gastroperisis, Dystonia, Osteoporosis,Raynaud’s,startling, and having odd taser effects throughout my body are some of other issues I deal with daily.

I’m blessed to have a great team of drs. which have really helped.

Botox - legs, back, shoulders, neck and eyes. A variety of meds, IVig and Osteopathic manipulation therapy. Most important physiological therapy. When it comes to pain, it’s hard to put a number on the pain. I feel like I have a high tolerance or maybe I’ve become so seasoned to the pain. And each area causes a different type or level of pain. I think what I’ve learned over the past few years is when to get ahead of the pain. What the triggers are that cause the tsunamis that lead to the exasperating pain.

This disease is a journey, no quick fix and as I’ve read from many SPS sites no two are alike.

My favorite medicine is being around people that make me laugh. They are the biggest part of my therapy. »

Posted
Thank you for tracking all this and sharing it here. I’ve been wondering about responses from other SPS patients to the trailer but haven’t been able to find much. But I’m not surprised it’s mixed. For most people, dealing with the US healthcare and insurance system is infuriating at the best of times, I can’t imagine what it’s like with a serious, chronic disease. She is undeniably privileged.
  • Like 1
Posted

Thank you for tracking all this and sharing it here. I’ve been wondering about responses from other SPS patients to the trailer but haven’t been able to find much. But I’m not surprised it’s mixed. For most people, dealing with the US healthcare and insurance system is infuriating at the best of times, I can’t imagine what it’s like with a serious, chronic disease. She is undeniably privileged.

 

That 100%.

 

I hope this documentary ends up being Positive For the SPS community.. all eyes are on the documentary now… Which is why I Hope it’s a honest portrait of what she’s going through, if we get a water down version is likely to really irritate a lot of the people who are suffering.

  • Like 1
Posted

Thank you for tracking all this and sharing it here. I've been wondering about responses from other SPS patients to the trailer but haven't been able to find much. But I'm not surprised it's mixed. For most people, dealing with the US healthcare and insurance system is infuriating at the best of times, I can't imagine what it's like with a serious, chronic disease. She is undeniably privileged.

 

Yes, it's important what you write about. I know a bit about the problems of chronically ill people in Europe, but I admit that the reality of health care in the US (I'm learning about it now thanks to SPS patients) is even more depressing.

 

I feel that Céline's image in the patient community has been harmed by two things: the media-publicized, unfortunate statements (true on Claudette's part and alleged from anonymous insiders) that she “has the best care money can buy” and “deserves to recover,” combined with the uproar over the Grammy ceremony. It seems to me that Céline herself has a great sense of reality, rare in people with her wealth status. In Vogue, she said honestly, “I have resources that other people don't have.” - but at the same time she wants to be a “spokesperson for SPS.” It's a difficult combination, however. How will she handle it?

 

I also think that this new mission of hers can help not only the patient community, but also herself: to make sense of her own difficult experiences. It impresses me that she is ready to do this so quickly. Perhaps meeting Irene, her empathy and realism, was helpful in some way.

 

 

That 100%.

 

I hope this documentary ends up being Positive For the SPS community.. all eyes are on the documentary now… Which is why I Hope it’s a honest portrait of what she’s going through, if we get a water down version is likely to really irritate a lot of the people who are suffering.

 

I think the documentary can be as honest as possible (even if it doesn't show any drastic scenes), but it still won't have an impact on the sense of injustice of the underprivileged. Because image issues are one thing, real economic inequality is another. I hope perhaps for one thing: that after the film is broadcast, the patient community will be able to say something like “She is one of us. She didn't steal the money she has from anyone; it's not her fault that humanity pays so much more (so absurdly much more!) to singers than to nurses and teachers. The unfair system is to blame, and she is doing what she can to help both herself and us.”

Posted

If Celine becomes an SPS spokesperson, she will draw from HER experience. And that of course involves the best care HER money can buy. The fact that she has already acknowledged her priviledge draws some very clear boundaries. Therefore, SPS patients should not complain about people assuming this is what they are going through. Celine has done her bit to differentiate her experience from the experiences of others.

 

The fact that people find SOMETHING to complain about is really showing their entitlement. Awareness is pre-requisite to their voices/experiences being heard, research to be funded/conducted, the issue in its own right to be put on the map and taken seriously. Like it or not, this was achieved because Celine came out. She has already done enough, but here we are consuming complaints from people who have already benefited from the fact that Celine publicly spoke about SPS.

 

If THEY were in her place what would THEY do? I would really like to ask that question. Stop public appearances in good days so that a wrong impression is not given? Stop people from giving standing ovations over trivial matters like showing up at the Grammy Awards or a Hockey game? Not release a documentary because this might not account for the experience of all SPS patients? Would they not get the best medical care for themselves?

 

I really do not understand what these people want. I have experienced lack of priviledge in several aspects of my life, but have never complained about those who are more priviledged than I am because I have the maturity to understand this is not their fault - it is the system's/society's fault. Of course, I have caught myself feeling jealous and wishing things would be different, but have never complained publicly or tried to put the blame on those who enjoy some sort of priviledge. Excuse me, but reading those comments made me feel disgusted. This sense of entitltement and the need to control Celine's narrative of HER experience is appalling.

 

This.

  • Like 1
Posted

If Celine becomes an SPS spokesperson, she will draw from HER experience. And that of course involves the best care HER money can buy. The fact that she has already acknowledged her priviledge draws some very clear boundaries. Therefore, SPS patients should not complain about people assuming this is what they are going through. Celine has done her bit to differentiate her experience from the experiences of others.

 

The fact that people find SOMETHING to complain about is really showing their entitlement. Awareness is pre-requisite to their voices/experiences being heard, research to be funded/conducted, the issue in its own right to be put on the map and taken seriously. Like it or not, this was achieved because Celine came out. She has already done enough, but here we are consuming complaints from people who have already benefited from the fact that Celine publicly spoke about SPS.

 

If THEY were in her place what would THEY do? I would really like to ask that question. Stop public appearances in good days so that a wrong impression is not given? Stop people from giving standing ovations over trivial matters like showing up at the Grammy Awards or a Hockey game? Not release a documentary because this might not account for the experience of all SPS patients? Would they not get the best medical care for themselves?

 

I really do not understand what these people want. I have experienced lack of priviledge in several aspects of my life, but have never complained about those who are more priviledged than I am because I have the maturity to understand this is not their fault - it is the system's/society's fault. Of course, I have caught myself feeling jealous and wishing things would be different, but have never complained publicly or tried to put the blame on those who enjoy some sort of priviledge. Excuse me, but reading those comments made me feel disgusted. This sense of entitltement and the need to control Celine's narrative of HER experience is appalling.

 

I agree with you 100%. But as you said, people will feel some way about it because it’s human nature… this disease is so poorly understood, that up until recently people were made to feel crazy because at times they can look healthy and then BOOM in the blink of an eye, they can have triggers that cause massive pain and struggle. I completely understand that Celine has the money and the means to receive the most science and medicine can offer, but for someone who isn’t as privileged they just want to be seen. I can see it from both lenses for sure. If someone can’t get out of bed or has to use a wheelchair to move on a “good day” then the person most known with this illness is getting glammed up in a couture dress to attend the Grammys with no assistance needed to walk, I could see how they could feel that adds fuel to the fire for the people who aren’t taking their pain serious enough.

 

Celine deserves to live her life, get the best care HER money can buy and be healthy… and nobody should ever think otherwise… but I think some with the illness who were so hopeful when she came out that she diagnosed would lead to medical breakthroughs now feel slighted. Because the general public may not put the pieces together that Celine’s struggle isn’t necessarily everyone else’s.

 

I see both sides of the coin, but Celine shouldn’t be vilified for her journey… like you said she can only draw from her experiences and nobody can doubt that the SPS world is better off now than 2 years ago because of her diagnosis, Celine has already done wonders for the community just by her revealing her illness.

  • Like 2
Posted

An important rule of thumb when working with the sick, disabled, etc.: Buddy, he/she is the one in the wheelchair, struggling to reach the bathroom on his/her own, he/she is the one who got the diagnosis that turned his/her life upside down, he/she is the one who, week after week and month after month, fights the pain, the callousness of insurers and the misunderstanding of those around him/her. He/she, not you. It is his/her suffering that will cause him/her to say unfair things in anger. Anyone who has ever worked with the sick and disabled knows how many angry emotions are in them - but also knows why those emotions are in them. And that they are actually very often not directed against those they hit.

 

They are the ones with SPS, not us. So at least, for God's sake, let's not lecture them on how they should “maturely” experience a disease they have had to live with for years, and about which we know as little as nothing. And that they should be careful with every word to constantly express gratitude to “some ultra-rich celebrity” (because that's exactly who Céline is to most of them - and to understand this, just insert the name of any millionaire whose fate we don't care about) - in addition, it's not really clear why they should be grateful, since nothing has usually changed in their lives and struggles. Some of them have even heard “This disease is not so terrible, Dion looks great, you too take the plunge.”

 

I don't know if I need to add that I write this with absolute, repeatedly expressed respect and admiration for Céline. But must this exclude understanding for other patients?

 

It's a well-known fact that excess suffering blinds one. But must love also blind?

  • Like 2
Posted

If Celine becomes an SPS spokesperson, she will draw from HER experience. And that of course involves the best care HER money can buy. The fact that she has already acknowledged her priviledge draws some very clear boundaries. Therefore, SPS patients should not complain about people assuming this is what they are going through. Celine has done her bit to differentiate her experience from the experiences of others.

 

The fact that people find SOMETHING to complain about is really showing their entitlement. Awareness is pre-requisite to their voices/experiences being heard, research to be funded/conducted, the issue in its own right to be put on the map and taken seriously. Like it or not, this was achieved because Celine came out. She has already done enough, but here we are consuming complaints from people who have already benefited from the fact that Celine publicly spoke about SPS.

 

If THEY were in her place what would THEY do? I would really like to ask that question. Stop public appearances in good days so that a wrong impression is not given? Stop people from giving standing ovations over trivial matters like showing up at the Grammy Awards or a Hockey game? Not release a documentary because this might not account for the experience of all SPS patients? Would they not get the best medical care for themselves?

 

I really do not understand what these people want. I have experienced lack of priviledge in several aspects of my life, but have never complained about those who are more priviledged than I am because I have the maturity to understand this is not their fault - it is the system's/society's fault. Of course, I have caught myself feeling jealous and wishing things would be different, but have never complained publicly or tried to put the blame on those who enjoy some sort of priviledge. Excuse me, but reading those comments made me feel disgusted. This sense of entitltement and the need to control Celine's narrative of HER experience is appalling.

 

Very well said. I agree with every single word you said. Let me give you a standing ovation. I hope nobody on the forum gets mad. :sofunny:

  • Like 1

Matthew Charles - "Fix You" - Live at The Stonewall Inn

Stonewall Sensation - Season 15

Originally written and performed by Coldplay

Posted

An important rule of thumb when working with the sick, disabled, etc.: Buddy, he/she is the one in the wheelchair, struggling to reach the bathroom on his/her own, he/she is the one who got the diagnosis that turned his/her life upside down, he/she is the one who, week after week and month after month, fights the pain, the callousness of insurers and the misunderstanding of those around him/her. He/she, not you. It is his/her suffering that will cause him/her to say unfair things in anger. Anyone who has ever worked with the sick and disabled knows how many angry emotions are in them - but also knows why those emotions are in them. And that they are actually very often not directed against those they hit.

 

They are the ones with SPS, not us. So at least, for God's sake, let's not lecture them on how they should “maturely” experience a disease they have had to live with for years, and about which we know as little as nothing. And that they should be careful with every word to constantly express gratitude to “some ultra-rich celebrity” (because that's exactly who Céline is to most of them - and to understand this, just insert the name of any millionaire whose fate we don't care about) - in addition, it's not really clear why they should be grateful, since nothing has usually changed in their lives and struggles. Some of them have even heard “This disease is not so terrible, Dion looks great, you too take the plunge.”

 

I don't know if I need to add that I write this with absolute, repeatedly expressed respect and admiration for Céline. But must this exclude understanding for other patients?

 

It's a well-known fact that excess suffering blinds one. But must love also blind?

Excuse me, but defending Celine does not exclude understanding for other SPS patients. I do not understand how these variables are linked.

 

I agree that SPS patetients are the ones dealing with SPS but you - more than anyone in this forum - have been posting/reinforcing their complaints. This is not the first time you did so. Of course, I do not have a problem with this, but it surprises me how you are literally initiating discussions in relation to SPS patients' experiences/views and then choose to essentially dimiss what I am saying on the grounds of ''they are the ones with SPS, not us... we know as little as nothing''. If this is the case, and we agree that we have very limited understanding of SPS, then maybe we should all stop talking about it? I am happy to do so, if agreed. However, if people actively discuss/bring up the matter then others will unavoidably contribute.

 

It is also important to emphasise that I never said SPS patients should be feeling gratitude towards Celine, much less express it constantly. Where did this come from? Things are not that simple/black & white to me. I said that the community benefited from the fact that Celine came out and managed to raise some awareness in relation to SPS. Because awareness is the first step to get things moving. This means that they should cut her some slack. Especially considering how meaningless priviledge can be when it comes to illness - evidenced in how Rene lost the battle to cancer like so many others do every single day.

 

A final thing, I did not lecture anyone as to how to experience SPS. Again, where did this come from? My point was in relation to how one should handle priviledge. It had all to do with how some of them choose to treat this so-called 'ultra-rich celebrity'. Comparative thinking - comparing yourself to others - is a form of self-abuse.

 

And let's all agree that Celine is not responsible for the assumptions the public will draw on SPS based on her public appearances. She is not responsible for how SPS patients will feel upon hearing from people that the disease is not so terrible. The ones to blame are those who draw quick assumptions and make ignorant comments.

  • Like 2
Posted

Very well said. I agree with every single word you said. Let me give you a standing ovation. I hope nobody on the forum gets mad. :sofunny:

Thank you! I cannot remember the last time you agreed with something I said so this is nice to see! :giggle:

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Recently Browsing   0 members

    • No registered users viewing this page.
×
×
  • Create New...