CÉLINE Dion opened up about her health struggles and grief journey in a new interview with Hoda Kotb.
Céline, 56, first revealed her stiff person syndrome diagnosis in December 2022 in an emotional video posted to Instagram.
In her first broadcast interview since her diagnosis, Céline told Hoda that she began experiencing symptoms 17 years ago.
She went on to talk about her husband, René Angélil, who passed away on January 14, 2016, after a battle with cancer. Her brother, Daniel, died two days later, also from cancer.
“At that time, my brain, my personality was – the show must go on,” explained Céline. She added that she ignored her symptoms to care for her husband.
“Crying like a baby now [crying emoji] we will never forget you Celine Dion!! you will be in our hearts forever,” said a fan he wrote on X, formerly Twitter, after the interview.
“It’s so heartwarming to see how positive Celine Dion is despite her health issues. What a resilient woman”, another added.
Read our Céline Dion interview blog for the latest updates…
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Explaining Stiff Person Syndrome, continued
Stiff person syndrome causes persistent spasms and is extremely rare, affecting only about one in a million people.
The neurological disease is typically found in individuals between the ages of 40 and 60.
Signs of the condition include:
- Intermittent spasms that later become continuous
- Smaller sensory stimuli (being more sensitive to noise, light and touch)
- Severe spasms
- Impaired breathing (in advanced cases)
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More about Céline Dion’s diagnosis
What is stiff person syndrome?
Stiff Person Syndrome is a rare neurological disorder that progresses over time.
The condition causes pain and muscle spasms that worsen over the years.
According to Contact A Family, the condition is characterized by “progressive stiffness and painful spasms in the back and limbs, which are often triggered by touch, noise, or anxiety, and exacerbated by movement.”
There is currently no cure, but death from the disease is rare.
Severe chest spasms can sometimes cause difficulty breathing.
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Watch the trailer for Céline Dion’s documentary
Celine Dion sobs about ‘fight’ with Stiff Person Syndrome and insists she will ‘crawl’ to shows in documentary trailer
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Céline’s message
“I want you to come see me again. I would like to invite you to sing with me again. You have been my supporters for so many years,” Céline said to the camera when asked to send a message to her fans.
She then admitted that she sometimes worries that her fans have forgotten her or don’t know how much they mean to her.
Céline told Hoda she was ready to return to the stage before singing a song for the interviewer.
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‘I’ll be back’
Céline said she was determined to return to the stage.
“I don’t want to be afraid of myself,” she said.
“Music is language and it’s in everyone’s life,” Céline added before holding back tears.
Hoda even cried when she heard Céline talk about her desire to perform again.
Céline then sang some lyrics that put a smile on Hoda’s face.
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Trapped in a bunker
Céline joked that she felt trapped in an emotional bunker.
“I’m going back to the stage. Even if you have to crawl, even if you have to talk with your hands,” she told Hoda.
“I am Céline Dion and my voice will be heard,” Céline added.
“It’s not because I need it, it’s because I want it and I miss it.”
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Céline’s struggle to sing
A clip from Céline’s documentary revealed that she was struggling to sing and crying when she couldn’t.
When asked what the illness took from her, she replied: “It didn’t take anything from me.”
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Film director talks about Céline’s emergence
Irene Taylor Brodsky, director of the documentary, joined Céline for an interview with Hoda.
Irene was present during one of Céline’s most serious medical emergencies.
“I wasn’t sure if she would survive,” said Irene, adding that it was one of the most difficult moments of her life.
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‘I am… Céline Dion’
Hoda asked Celine to fill in the blank “I am _____”. Céline replied: “I am Céline Dion”.
She explained that it was intimidating to say her name because she heard it so often.
Céline told Hoda that she wanted to release a documentary to explain to her fans where she has been these past few years.
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Living with SPS
When asked what it’s like living with SPS, Céline said she takes it one step at a time.
She explained that too much or too little work can increase your symptoms.
Even an unexpected touch can trigger symptoms.
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Time to tell the world
Céline said she no longer wanted to lie to her fans about having a “sinus infection”.
“It was time to tell the world,” she explained.
There is no cure for SPS, but Céline’s doctors considered her symptoms to be treatable.
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Céline never thought, ‘why me?’
SPS affects one in every million individuals. Hoda asked Céline if she ever asked why she was affected.
“I could have followed this path,” began Céline.
She said she never questioned, “why me?” because she knew it wouldn’t end her syndrome.
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‘Is this the end of my career?’
When Céline finally received her SPS diagnosis, she wondered if it would end her career.
“I always felt like I was going to fall,” she told Hoda.
Céline explained that every moment makes her body feel like her joints are going to lock up.
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COVID gave Céline an opportunity
The coronavirus pandemic allowed Céline to stop performing and focus on her health.
She stopped taking her prescription, but her health continued to deteriorate.
Céline continued to pray that the doctors would find something so she could have an answer.
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Céline’s poor health
Céline told Hoda that she tried many medications before receiving the diagnosis.
“I didn’t know, honestly, that it could kill me,” said Céline as she explained that trying various medications without a diagnosis harms the body.
She took about 90 mg of Valium a day to relax her muscles. Her body started to adjust to the medications, so she had to increase the dosage.
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‘Not telling the truth was too much to bear’
Céline explained that she ignored her symptoms to help care for her husband who was battling cancer.
“I had to hide. I was trying to be a hero,” she told Hoda.
Her husband died in 2016 and just two days later her brother also died of cancer.
“At that time, my brain, my personality was – the show must go on,” she explained.
Céline continued to perform despite increasing symptoms.
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Céline’s ‘scary’ show in 2008
Céline talked about a show in 2008 where she started to notice a change in her voice.
She said she was panicking before the show to a sound employee.
“I was trying to compensate and find another way to have a voice, so we lowered the songs a little,” said Céline.
She described her new technique of making her voice sound more nasal, and if all else failed, she would ask the audience to sing along.
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‘It’s like someone is strangling you’
Céline explained that she felt strangled while singing.
Her throat spasms only worsened and she found herself embroiled in a medical mystery.
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Difficult, painful, challenging
Céline said life has been “difficult, painful and challenging” since her diagnosis.
She first realized her throat was spasming more than 17 years ago.
Céline began to worry about her health during a tour stop in Germany. She said she couldn’t control her voice and couldn’t exercise it before a show.
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‘I was not well’
Céline Dion says her song, Courage, defines her life now.
The first lyric of the track is: “I’d be lying if I said I was fine.”
She told Hoda she wasn’t okay.
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Tune in now!
Tune in to Céline Dion’s exclusive interview with Hoda Kotb on NBC now!
This is the first time Céline has sat in front of the cameras since she announced her stiff person syndrome diagnosis in 2022.
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How to watch
Céline Dion’s interview with Hoda Kotb airs tonight on NBC at 10pm EST.
The interview will include a preview of Céline’s Amazon Prime documentary, scheduled for release on June 25th.
You can also stream tonight’s interview with subscriptions to the following services:
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Watch a preview of tonight’s interview
Celine Dion Admits She ‘Feels Her Body Leaving’ Her With Stiff Person Syndrome -
Céline announced her status in 2022, part four
“I want to thank you for your love and support on my social media. It means a lot to me.”
“Take care of yourselves. Stay safe. I love you guys so much. And I hope I can see you again soon.
“Thank you,” Céline said in her video, holding back tears.
The caption read: “I have been dealing with health issues for a long time and it has been very difficult for me to face these challenges and talk about everything I have been through…
It pains me to say that I will not be ready to restart my European tour in February.”
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Céline announced her status in 2022, part three
“I have a great team of doctors working alongside me to help me get better, and my precious children who are supporting me and giving me hope,” Céline added.
“I am working hard with my sports medicine therapist every day to regain my strength and ability to perform again, but I have to admit it has been a struggle.”
“All I know is singing. It’s what I’ve done all my life and it’s what I love doing most.”
“I miss you guys so much. I miss seeing you all, being on stage, performing for you, I always give 100% when I do my shows, but my condition is not allowing me to give that at the moment.
“To reach you, again, I have no choice but to focus on my health at this time, and I am hopeful that I am on the road to recovery. I can recover,” she added.
This story originally appeared on The-sun.com read the full story
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