Céline Dion tells Hoda Kotb that her stiff person syndrome taught her to talk to her kids: Biggest revelations (2024)

Céline Dion vows to return to the stage: ‘Even if I have to crawl’

3d ago / 2:49 AM UTC

Dion says that because her medical episodes can happen at any time, she’s had to prepare and educate her two younger sons, 13-year-old twins Nelson and Eddy.

Dion says she’s taught them what to do should they witness a sudden attack.

“Don’t be scared if I can’t talk. Mom’s not dying. Mom cannot use her vocal cords. If I (cannot) respond to you, it’s possible that I hear you, but I cannot communicate,” Dion says she’s told them. “They know what to do: Call 9-1-1.”

Dion shares the twins and her eldest son, René-Charles, with her late husband of more than two decades, René Angélil, who died in 2016.

Despite tough conversations with her kids, she says the disease didn’t “take anything away from me.”

“It got me knowledge. It gave me a responsibility,” she says. “As a mother, first of all, talk to your kids. Let them know that you will not die. ‘Yes, Dad is in Heaven and he’s fine … Mom is going to be OK.’”

She has previously opened up about her family’s support amid her health battle.

“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,” Dion said in her Instagram video announcing her diagnosis in December 2022.

3d ago / 2:47 AM UTC

Dion began filming the “I Am: Céline Dion” documentary before her diagnosis and continued as her illness progressed.

Documentary director Irene Taylor Brodsky was with the singer when she suffered one of her serious medical attacks.

Brodsky tells Hoda that Dion had been laughing moments before the symptoms struck. Then, Dion got a cramp in her foot.

“Five seconds later, we were in a totally different stratosphere,” Brodsky says.

Dion couldn’t speak and the muscles in her whole body completely stiffened.

“I’ve never told you this, but it was the most extraordinary and extraordinarily uncomfortable moment in my life ... as a filmmaker but also as a mother, as a fellow human, because I didn’t know what was happening,” Brodsky says.

“Her body was enduring something that was unimaginable. And I wasn’t sure if she was aware of it. And I wasn’t sure if she was going to survive it,” Brodsky continues.

Dion responds to Brodsky, "I'm sorry that it was hard."

Brodsky responds, "Oh, not as hard as it was for you."

3d ago / 2:29 AM UTC

To manage the symptoms that she was experiencing prior to her diagnosis, Céline Dion began taking diazepam, a drug commonly known as Valium, to help relax her muscles.

“Trying a lot of things when you don’t know what you have can kill you. No bueno. Not nice. But I was trying. We were trying,” she tells Hoda.

The “All By Myself” singer says she did not want to stop performing, and the drug relaxed her “whole body.” But she didn’t realize the Valium dosage she was taking could have dire consequences.

“I did not know, honestly, that it could kill me,” she says. “I would take, for example before a performance, 20 milligrams of Valium, and then just walking from my dressing room to backstage, it was gone already.”

She says her body got used to the medication “that fast,” and she would feel her symptoms again after “20 minutes.” She began to raise her dosage. “You get used to it, it doesn’t work,” she says, and then she needed “more.”

At one point, she was taking up to 90 milligrams a day, an amount that can “kill you,” she says.

During the pandemic, she weaned herself off the medications, “especially the bad ones,” with the help of doctors. “I stopped everything because it stopped working,” she says.

Today, Dion is undergoing immunotherapy and non-pharmacological treatments, like physical therapy, as well as taking drugs that help with the muscle spasms.

3d ago / 2:18 AM UTC

As she continued to struggle to control her voice, Dion had to find ways to work through it. During shows, she would pretend her microphone wasn't working or let the audience take over the singing.

"I was trying to survive," she tells Hoda. "I let the people sing with me a lot."

Dion also says she "had to lie" about her struggles. "We did not know what was going on. I did not take the time (to rest). I should have stopped, taken the time to figure it out."

At the same time, her late husband, René Angélil, "was fighting for his own life," Dion says, explaining why she didn't seek answers for her health issues sooner. “I had to hide. I had to try to be a hero. I became a nurse. I became a supporter. I had to protect my kids, practice my passion."

"Feeling my body leaving me, holding onto my own dreams — do I have dreams? What’s going on? I can’t sing," Dion recalls of this period of her life.

Angélil died in 2016 from throat cancer. The couple had three children together.

3d ago / 2:15 AM UTC

Stiff person syndrome can cause severe muscle spasms and stiffness, as well as double vision and slurred speech, according to John Hopkins Medicine.

At one point during her 2008 world tour, Dion briefly considered canceling a concert.

“When I went onstage, I was very, very, very scared,” she recalls. “I was scared because just before I went onstage, I asked my sound man —I’m like, ‘I don’t know if I can do the show. I don’t know what’s happening.’”

She says that the more she panicked, the more she spasmed. Her sound man suggested canceling the show and calling a doctor, but she said no.

“Everybody lived in fear and the unknown,” Dion says. “And I went onstage.”

She "started to sound more nasal, just differently," onstage, she says. "My whole team, they were trying to find my voice too."

During that period, there were moments her voice was "OK, not too bad," and others where it was "bad (and) worse," Dion adds.

3d ago / 2:09 AM UTC

Dion went into detail about how it feels to sing with stiff person syndrome after recalling that early flare-up in Germany.

“It’s like somebody is strangling you,” Dion says. “It’s like somebody is pushing your larynx, pharynx this way.”

Attempting to sing and raising her voice, Dion says, “You cannot go high or lower.” She describes the feeling as “a spasm” in her throat.

When she first started experiencing these symptoms, she initially chalked it up to "working too hard" and even having a cold.

"I could say that it’s like a little cold starting, or just because I pushed too much. It’s the third show in a row," she says.

“I can’t wait to work too hard,” she adds with a laugh. “Trust me. But the thing is that it was different. It was more spasmodic than (a) cold.”

3d ago / 2:08 AM UTC

During her “Taking Chances” world tour in 2008, Dion says she realized for the first time that she was struggling to sing in the way she was used to.

“I was in Germany and I was fine, and I had breakfast,” she recalls to Hoda Kotb. “And then my voice started to go high and then I ... felt like I could not control it. I was skidding. I was like, I could not control anything.”

Dion had to travel to the next city, but when doing her vocal exercises, she found it difficult to sing. Her voice strained, and with “25 songs to sing,” Dion cut her sound check short.

“I had to find a path. It was squeezed,” she says about her vocal chords. “So I said, ‘I’m just going to do two songs.’ Normally I sing, like, almost an hour to 45 minutes for a sound check.”

In fact, the concert movie for that tour shows her complaining to a doctor about her voice. “My main problem right now is my neck. I cannot relax my neck, so I cannot relax my vocal chords, so I cannot vocal exercise well,” Dion said in the film, released in 2010.

4d ago / 5:30 PM UTC

Dion struggled with muscle spasms, pain and rigidity for nearly 20 years before receiving her diagnosis.

When she first was diagnosed, she says she wanted to understand the neurological disorder and “figure it out.”

“And I wanted to also figure out is there something that I can do for myself … is it the end of my career?” she says.

Eventually, in 2022, Dion decided to share her diagnosis with the world.

“I didn’t want to live in this bunker anymore ... because the burden was so heavy,” she tells Hoda. “And I was like, ‘OK, I need to just, like, do what I need to do to — to do the best. But I need to also tell the world what’s happening.”

She shared an Instagram video in December 2022 explaining her diagnosis and announced she was postponing a number of tour dates.