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Tag: Céline Dion stiff-person syndrome

  • It’s All Coming Back to the Audience Now, Or: Céline Dion: The Ultimate Athlete at the Olympics

    It’s All Coming Back to the Audience Now, Or: Céline Dion: The Ultimate Athlete at the Olympics

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    During the opening of I Am: Céline Dion, the gut-wrenching, Irene Taylor-directed documentary about the singer’s rare medical condition, Stiff Person Syndrome, an interview with “vintage” Dion is shown. She’s still in her early career and therefore still more versed in (Canadian) French when she says with a heavy accent, “My dream is to be international star and to be able to sing all my life.” It’s an immediately bittersweet introduction, for viewers already know that Dion has been felled by her condition for the past four years, not performing live since 2020, when she managed to round out her Courage World Tour in New Jersey (a tour plagued—pun intended—by Covid-19 shutdowns and, then, her illness). So maybe, if nothing else, Dion decided she needed to perform again so that the last place she sang wouldn’t be in New Jersey, but a milieu more befitting of her glamor and caliber.

    Thus, as she put it, if she was going to perform again, it ought to be at the Olympics in Paris. The symbolism is clear, of course. This is the woman who has been a “vocal athlete” (as Kelly Clarkson called her) for her entire life. And training to perform again for this particular appearance was nothing if not a marathon. One that has been dogged by so many physical setbacks that have, in turn, caused emotional lows that then feed those physical setbacks anew in a proverbial vicious cycle.

    For someone like Dion to be unable to use her voice—as though the Sea Witch (a.k.a. Ursula) ripped it out of her like a soul—is unimaginable. For it is the entire essence of her being, her literal raison d’être. As she also remarked in I Am: Céline Dion, “Music. I miss it a lot. But also…the people. I miss them, you know?” In another “vintage” interview clip in the documentary, Dion is shown saying that performing is like a drug, complete with the rush of the audience and the energy that they give her. The life that they literally breathe into her with their presence and energy. She also adds, “When you have the soul of an artist…artist one day, artist always. You can’t live without it.” I Am: Céline Dion gives a snapshot of how challenging and, yes, depressing it is for her to do just that—taking a break from her usual career rigors to focus on improving her health. Plus, spending more time with her twins, Eddy and Nelson. While she seems to enjoy the latter, it doesn’t do much to mitigate the physical and emotional pain caused by her condition. A disorder so rare it only happens to one in a million people. And while Dion is a one in a million talent, she certainly never wanted that to extend into a health condition.

    In the documentary, she gives a sample of what her voice sounds like with the drawbacks of SPS, breaking down crying after hearing it go all out of control. Not being able to make her vocals do what she wants them to. “I don’t want people to hear that,” she wails. Which is another large part of why she stopped singing. Anything less than perfection, to Dion, is not worth delivering to the public. As Deadpool (Ryan Reynolds) said to her at the end of the “Ashes” music video, “You’re at an eleven. We need to get you down to a five, five and a half, tops. Just phone it in.” Dion ripostes, “Listen, this thing only goes to eleven. So beat it, Spider-Man.”

    And she was definitely “at eleven” for her rendition of Édith Piaf’s “Hymne à l’amour,” dramatically delivered from the Eiffel Tower, just beneath the five signature Olympic rings that have been placed on the structure in honor of the games. Wearing a sparkling white evening gown (Dior, naturally) suited for a Vegas residency, Dion proved what she said (and then some) in I Am: Céline Dion: “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again.” Her drive to perform is part of what has helped her combat, as much as possible, being totally debilitated by her condition, declaring, “All I know is singing, it’s what I’ve done all my life. And it’s what I love to do the most.”

    Audiences could see that love on full display the night of July 26th, a rain-soaked evening that was dogged by other behind-the-scenes issues (including a bomb threat near Parc des Princes ahead of a soccer match between Israel and Mali and a strategic, widespread arson attack on high-speed French rail lines). But as Dion delivered Piaf’s powerful words in French (e.g., “Mon amour, puisque tu m’aimes/J’irais jusqu’au bout du monde,” or, in English, “My love, since you love me/I would go to the ends of the Earth”), it was difficult to focus on anything else but the reminder of how much the world has been missing this voice from its frequency.

    One can see how much she’s missed it, too. It’s there, in Dion’s eyes, as the song comes to a close, how she’s utterly overwhelmed by being able to perform again, looking out into the black night of Paris and knowing that thousands (plus the millions watching on TV) are taking in her show(wo)manship yet again. As Céline says in I Am: Céline Dion, “It’s the performance that counts, not the song. A performance is way bigger than the song.” And this was a very big performance indeed. Monumental. For so many reasons—not least of which is the fact that Dion stayed true to herself and her fans when she promised, “If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. And I won’t stop. I won’t stop.” And, in returning, she chose a song that has a unifying lyric at a time when the world has never seemed less united: “Dieu réunit ceux qui s’aiment” a.k.a. “God unites those who love each other” (this belted out in a peak “Don’t Cry For Me Argentina” manner and composition, complete with Dion’s chignon). While Piaf might have been referring to the love of her life who died in a plane crash, Dion, here, is referring to the audience she’s been separated from for far too long.

    And she’s trained and conditioned herself for these past years, like an Olympic athlete, in order to be with them again. As she pronounced on 1999’s “That’s The Way It Is,” “When you want it the most/There’s no easy way out/When you’re ready to go/And your heart’s left in doubt/Don’t give up on your faith/Love comes to those who believe it/And that’s the way it is.” Indeed, that’s exactly the way it was for her grand return, one that didn’t disappoint. Even if some thought that the weather did.

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    Genna Rivieccio

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  • Céline Dion documentary to explore her life, battle with stiff person syndrome  | Globalnews.ca

    Céline Dion documentary to explore her life, battle with stiff person syndrome | Globalnews.ca

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    A new documentary about Céline Dion and her diagnosis of stiff person syndrome (SPS) is in the works, with Amazon MGM landing the worldwide rights to the film.

    The documentary, titled I Am: Céline Dion, follows the Quebec chanteuse as she is diagnosed with SPS and navigates her first year living with the neurological condition.

    “This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me,” Dion, 55, said in a statement.

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    Dion shares that she is optimistic about the future and still plans to return to singing.

    “As the road to resuming my performing career continues, I have realized how much I have missed it, of being able to see my fans. During this absence, I decided I wanted to document this part of my life to help others who share this diagnosis.”

    The synopsis for the doc reads: “From visiting her couture touring wardrobe and personal effects to spending time in the recording studio, the documentary captures a global megastar’s never-before-seen private life. An emotional, energetic, and poetic love letter to music, I Am: Celine Dion captures more than a year of filming as the legendary singer navigates her journey toward living an open and authentic life amidst illness.”

    The documentary, which will air on Prime Video Canada, has yet to be given a release date.


    Click to play video: 'What is ‘Stiff-Person Syndrome’?'


    What is ‘Stiff-Person Syndrome’?


    Dion first revealed her diagnosis to the public in December 2022, saying the disease does not allow her “to sing the way I’m used to.”

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    She cancelled the rest of her world tour last May, apologizing to her fans.


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    “I’m so sorry to disappoint all of you once again,” she said in a statement. “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100 per cent.

    The move came after she postponed her return to her Las Vegas residency in 2021, citing medical issues.

    This past December, Dion’s sister, Claudette Dion told French-language news site 7 Jours that her sister can no longer control certain body movement, but that the ultimate goal is “to return to the stage.”

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    “In what capacity? I don’t know,” she added.

    And several months earlier, in August, Claudette said that another of their sisters, Linda, had moved in with Dion to help with her care.

    “When I call her and she’s busy, I speak to my sister Linda who lives with her and tells me that she’s working hard. She’s listening to the top researchers in the field of this rare disease as much as possible,” Claudette told Le Journal at the time.


    Click to play video: 'Celine Dion’s sister says singer has lost control of her muscles due to stiff person syndrome'


    Celine Dion’s sister says singer has lost control of her muscles due to stiff person syndrome


    The cause of SPS, an extremely rare disease, is still unknown, according to Yale Medicine, “but researchers suspect that it may be the result of an autoimmune reaction where the body attacks nerve cells in the central nervous system that control muscle movement.”

    The name doesn’t do justice to the pain and life-changing symptoms the syndrome causes, Tara Zier, founder of the Stiff Person Syndrome Research Foundation, told The Canadian Press last year.

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    “A lot of people have challenges with mobility. Many have assisted devices for mobility, walkers, wheelchairs. Some people are bedridden,” she said.


    FILE – Celine Dion announced in May she is cancelling her “Courage” world tour as she continues to receive treatment for stiff person syndrome.


    Graham Hughes / The Canadian Press

    The Stiff Person Syndrome Research Foundation says “the most common symptoms of SPS are muscle rigidity, stiffness and spasms in the muscles of the trunk including the back and limbs.”

    These can be triggered by environmental stimuli, like loud noises or emotional stress.

    “The muscle spasms can be so severe they cause the person to fall down. The muscles gradually relax after the stimulus is gone,” the Yale Medicine website states.

    While there is no cure for SPS, when doctors treat patients with this condition, Yale Medicine says they focus on managing the symptoms with medications “such as sedatives, muscle relaxants, and steroids.”

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    &copy 2024 Global News, a division of Corus Entertainment Inc.



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    Michelle Butterfield

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  • Celine Dion's Sister Gives Update On Singer's Stiff-Person Syndrome

    Celine Dion's Sister Gives Update On Singer's Stiff-Person Syndrome

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    Claudette is updating fans on how her sister Celine Dion is going in her ongoing battle with stiff-person syndrome.

    This comes after the artist took a step back from performing last year to manage her health. Now, per Claudette, the neurological disorder has caused Celine Dion, age 55, to lose control of her muscles.

    “She works hard, but she has no control over her muscles. What makes me sad is she was also so disciplined,” Claudette reportedly told French publication 7 Jours.

    As mentioned, Dion let fans in on her health struggles in December 2022 via social media. In a short clip, she revealed that doctors diagnosed her with stiff-person syndrome after trying to pinpoint the cause of her spasms. Dion added that it was “really difficult” for her to “talk about everything” she had been experiencing.

    At the time, she was already having trouble walking and using her vocal cords like she used to. However, she reassured fans that she had a “great team” of medical specialists and the support of her three children, René-Charles and twins Nelson and Eddy.

    Watch her full announcement below.

    The effects of the rare disorder forced Celine Dion to cancel all of her 2023 shows. In her Dec. 2022 announcement, she mentioned they’d be rescheduled to 2024. However, by May 2023, Dion had canceled the remainder of her world tour. Now, it’s unclear if she’ll ever touch a mic again.

    “Vocal cords are muscles, but so is the heart. That’s what gets to me. Because it’s one in a million case, scientists don’t have much research on the topic because it didn’t affect that many people,” Claudette reportedly said.

    There’s no cure for stiff-person syndrome, it is only managed with medications such as muscle relaxers. In addition to stiff muscles that can lead to falls and related injuries, people diagnosed with the disorder also experience greater sensitivity to noise, touch, and emotional distress. The symptoms can appear between ages 30 and 60, per the National Institute of Neurological Disorders and Stroke.

    Despite this nightmare for their family, Claudette added that Celine Dion has received an output of love and support since the reveal.

    “If you only knew how many calls we receive at the [Foundation Maman Dion for disadvantaged kids] to hear from Céline,” Claudette said. “People tell us they love her and pray for her. She gets so many messages, gifts, blessed crucifixes.”

     RELATED: WATCH: Justin Bieber Shows Mobility In His Face After Temporary Paralysis From Ramsay Hunt Syndrome

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    Cassandra S

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  • Céline Dion’s sister shares another painful update in singer’s health battle  | Globalnews.ca

    Céline Dion’s sister shares another painful update in singer’s health battle | Globalnews.ca

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    Céline Dion‘s sister has shared a heartbreaking update about the singer’s illness, saying the legendary chanteuse “doesn’t have control over her muscles” due to symptoms of stiff person syndrome (SPS).

    In a French-language interview, Claudette Dion told 7 Jours that her sister can no longer control certain body movements, but that the ultimate goal is “to return to the stage.”

    “In what capacity? I don’t know,” she added.


    FILE – Singer Céline Dion performs at the Vidéotron Centre in Quebec City on Wednesday, Sept. 18, 2019.


    Jacques Boissinot/The Canadian Press

    It’s been a year since the pop superstar announced her diagnosis with the rare autoimmune disorder of the nervous system.

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    Her world tour was supposed to take the 55-year-old to Europe and the U.K. this fall and next spring, but she announced in May that she would cancel the tour.

    “I’m so sorry to disappoint all of you once again,” she said in a May 26 statement. “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100 per cent.

    “There are some who have lost hope because it is a disease that is not (very well) known,” Claudette told 7 Jours.


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    “What pains me is that she has always been disciplined. She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.’”

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    In August, Claudette said that another of their sisters, Linda, had moved in with Dion to help with her care.

    “When I call her and she’s busy, I speak to my sister Linda who lives with her and tells me that she’s working hard. She’s listening to the top researchers in the field of this rare disease as much as possible,” Claudette told Le Journal at the time.


    Click to play video: 'Celine Dion struggling to find medications for health battle, sister shares'


    Celine Dion struggling to find medications for health battle, sister shares


    “I honestly think that she mostly needs to rest. She always goes above and beyond, she always tries to be the best and top of her game. At one point, your heart and your body are trying to tell you something. It’s important to listen to it.”

    The cause of SPS, an extremely rare disease, is still unknown, according to Yale Medicine, “but researchers suspect that it may be the result of an autoimmune reaction where the body attacks nerve cells in the central nervous system that control muscle movement.”

    Story continues below advertisement

    The name doesn’t do justice to the pain and life-changing symptoms the syndrome causes, Tara Zier, founder of the Stiff Person Syndrome Research Foundation, told The Canadian Press earlier this year.

    “A lot of people have challenges with mobility. Many have assisted devices for mobility, walkers, wheelchairs. Some people are bedridden,” she said.

    The Stiff Person Syndrome Research Foundation says “the most common symptoms of SPS are muscle rigidity, stiffness and spasms in the muscles of the trunk including the back and limbs.”


    Click to play video: 'What is ‘Stiff-Person Syndrome’?'


    What is ‘Stiff-Person Syndrome’?


    These can be triggered by environmental stimuli, like loud noises or emotional stress.

    “The muscle spasms can be so severe they cause the person to fall down. The muscles gradually relax after the stimulus is gone,” the Yale Medicine website states.

    Story continues below advertisement

    While there is no cure for SPS, when doctors treat patients with this condition, Yale Medicine says they focus on managing the symptoms with medications “such as sedatives, muscle relaxants, and steroids.”


    FILE – Celine Dion performs in concert at the Bell Centre in Montreal, Sunday, July 31, 2016.


    Graham Hughes / The Canadian Press

    In early November, Dion made a surprise appearance with her sons when the Montreal Canadiens took on the Golden Knights in Las Vegas.


    Click to play video: 'Céline Dion visits the Montreal Canadiens in Las Vegas'


    Céline Dion visits the Montreal Canadiens in Las Vegas


    The icon shared a few photos online, marking her first public outing since her diagnosis.

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    In the snaps, Dion posed her children — René-Charles and twins Nelson and Eddy — in the locker room with Habs players and coach Martin St. Louis. The legendary singer and her boys had “such a fun time” visiting the team.

    With files from Global News’ Kalina Laframboise and Sarah Do Couto

    &copy 2023 Global News, a division of Corus Entertainment Inc.

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    Michelle Butterfield

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  • Céline Dion reveals diagnosis of rare neurological disease: ‘It’s been really difficult for me’  | Globalnews.ca

    Céline Dion reveals diagnosis of rare neurological disease: ‘It’s been really difficult for me’ | Globalnews.ca

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    Legendary Canadian singer Céline Dion has rescheduled several European tour dates due to a recent diagnosis of a rare neurological disorder called stiff-person syndrome.

    In two videos posted Thursday to Dion’s social media accounts (both in English and French), she claimed the debilitating disease does not allow her “to sing the way I’m used to.”

    Stiff-person syndrome is an incurable disorder that causes progressive muscle rigidity and spasms. Those diagnosed with the disorder can be disabled, bedridden or unable to care for themselves, according to The Stiff Person Syndrome Research Foundation.

    Read more:

    Ashton Kutcher and his twin have brutally honest conversation about past rifts, jealousy

    For Dion, 54, she said the muscle spasms she suffers “affect every aspect of my daily life.”

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    She continued, tearfully telling fans that the disorder is “sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”

    “I’ve been dealing with problems with my health for a long time, and it’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through,” she said.

    Dion was intensely regretful that her diagnosis will make her unable to launch the European leg of her tour in February. Her 2023 tour has been rescheduled for the following year. Eight of Dion’s 2023 performances, from May 31 to July 17, have been cancelled altogether.

    Still, the My Heart Will Go On singer assured fans that she, her doctors and her family are doing everything in their power to help her condition improve.

    The five-time Grammy award winner was hopeful she will sing again.

    “All I know is singing,” she said. “It’s what I’ve done all my life. And it’s what I love to do the most.”

    Read more:

    Actor Anne Heche not intoxicated at the time of death, autopsy finds

    François Legault, the premier of Québec, sympathized with Dion’s diagnosis on Thursday morning. While on his way to attend question period in the National Assembly, Legault told reporters he hopes Dion “gets well as soon as possible.”

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    “We’re so proud of her. And she’s coming from Charlemagne in my riding. So, it’s important,” Legault said.

    At Queen’s Park in Toronto, a children’s choir gave a tribute to Dion and performed My Heart Will Go On.

    Dion said she is working with a sports medicine therapist every day to increase her strength and get her into performance shape.

    “I miss you so much. I miss seeing all of you,” Dion told her fans. “I always give 100 per cent when I do my shows, but my condition is not allowing me to give you that right now.”

    Earlier this year, Dion postponed her world tour due to “severe and persistent muscle spasms.”

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    Information about Dion’s tour and rescheduling can be found on her website.

    The National Center for Advancing Translational Sciences reported there are fewer than 5,000 known cases of stiff-person syndrome in the U.S. The symptoms of the disorder can begin at any point in a patient’s life, though it is most commonly noticed in adulthood.

    &copy 2022 Global News, a division of Corus Entertainment Inc.

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    Sarah Do Couto

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