Cline Dion Suffers Medical Crisis in Documentary: Her Doctor Explains

The new documentary I Am: Cline Dion, began streaming on Prime Video earlier this week, giving fans of the pop icon a deeply personal look at her journey with stiff person syndrome and her efforts to get back on track. scene, despite the painful effects of the rare neurological disease on his body.

At the film's premiere, Celine Dion was moved by the number of spectators, telling the audience: “This is by far the biggest crowd I've had in a few years. …Thank you all from the bottom of my heart for being a part of my journey. This film is my love letter to each of you. I hope to see you all again very soon. »

The last time she performed was in early 2020, before the pandemic paralyzed the world, even though she has lived with symptoms of the autoimmune disease for 17 years.

Dion worked on the film with director Irene Taylor, who said in a New York Times interview that the music legend gave her full access to his life. As a result, a particularly painful scene was included at the end of the film. It shows Dion experiencing a serious episode of stiff person syndrome, which causes muscle stiffness and spasms, but she didn't want this scene deleted or shortened.

Here's what we know about what happened during those heartbreaking moments on camera.

Cline Dion suffers medical crisis in documentary

In this scene, Celine Dion undergoes physiotherapy shortly after viewers see her record a new song, Love Again. She follows what appear to be standard exercises with her physical therapist, as part of her treatment efforts to improve her health and hopefully perform again.

Then she starts feeling cramps in one foot, her first spasm of the day, she says. Within minutes, her entire body is tense to the point where she can't speak, move or even change her facial expression, which is distorted by the pain.

I could see this stiffness that was unlike the supple, fluid dancer I had filmed for months doing her physical therapy. Within minutes, she was moaning in pain, Taylor said. The New York Times.

Her physical therapist lays her on her side on a massage table, her limbs shaking and her fingers pinned, stretched out at awkward angles. Her lip begins to tremble as well.

A member of her team asks Dion to shake his hand if she hears it. She remains motionless and cowered, but finds a way to show him that she is aware of what is happening to her and around her. “She’s still with us,” says her physiotherapist.

Tayler said she wasn't sure if Dion was breathing during all of this “because she was moaning and then she stopped.” …I was very panicked. I looked around and saw that his therapist had called his department manager. security. His bodyguard immediately entered the room. I immediately saw that these two men were there to take care of her and that they were trained to do so.

As the seizure continues, a close-up shows Dion's face glistening with silent tears as she moans in pain. In the scene, she is given a benzodiazepine nasal spray, her doctor, Dr. Amanda Piquet, director of the autoimmune neurology program at the University of Colorado Anschutz Medical Campus, told TODAY.com. It is a depressant medication that relieves anxiety and reduces muscle spasms.

The spasms seem to last between 30 minutes and an hour, under the worried gaze of his team. Eventually, her muscles calm down enough that she can sit up and talk again.

“Every time something like that happens, I feel so embarrassed,” Dion said after the film. “I don't know how to express that feeling, you know, of not having control over yourself.”

Her physiotherapist then speculates that her early enthusiasm for singing may have played a role in her onset of stiff-person syndrome. Dion wonders aloud how she will ever be able to perform again if an intimate recording session can trigger a medical crisis.

“If I can’t be stimulated by what I love, then I’m going to go on stage, and you’re going to put the pulse oximeter on me and turn me onto my back?” she says.

“It’s scary, I know,” replies his physiotherapist. ” It's hard. This is not the end of your journey. »

In an interview with TODAY's Hoda Kotb that aired earlier in June, Taylor called filming the scene “the most extraordinarily uncomfortable moment of my life, as a filmmaker but also as a mother, as a fellow human being, because I didn't know what was happening.”

“I had this uncertainty about whether I should continue filming or not. But (Cline) gave me the strength to continue. At that point, we had been filming together for several months, so she really had me formed: 'Just keep going.'”

“Her body was going through something unimaginable, and I wasn't sure she was aware of it,” Taylor continued. “I wasn’t sure she would survive it. It was really hard to sit next to her and talk about it out loud because it was so intense. »

Dion responded, “I just want you to know that you did the right thing. I'm sorry this is difficult.”

Reflecting on her severe bouts of stiff person syndrome, Dion told Hoda that she used to “lose my mind for two hours without realizing it.” At first, she was like, “Okay, it’s going to be okay. (But) then you have trouble walking, and then you have a blackout for two hours, and you're like, 'What is a stiff person syndrome attack?' »

Many patients with stiff person syndrome constantly experience muscle cramps, spasms and stiffness, but certain movements or emotions can trigger “a complete spasm of the whole body,” says Piquet, who is a member of the advisory board of the Stiff Person Syndrome Research Foundation.

Recalling the scene of Dion's body spasm, which began in his foot, Piquet says: “This anxiety, this panic, this continuous spasm that was not releasing very quickly triggered a full body spasm.

“It’s not a crisis,” Piquet clarifies. “It's a spasm that happens, and patients are aware of what's happening. There's a lot of anxiety, there's a lot of panic, your adrenaline is pumping.”

David Axelrod, 36, of Milford, Connecticut, has experienced similar episodes due to his stiff person syndrome.

“On the minor side of a severe spasm, for example, if I yawn too much or chew funny, my whole neck and throat will spasm, and the muscle will bulge, and my jaw will get stuck in place. place, and I just have to breathe through it, throw some heat into it and try to calm it down,” he explains.

But “the worst kind of spasm,” he says, is the one that extends from his rib cage to his abdomen and down his back. “I turn into a solid sheet of muscle, and you can even see the individual muscles contracting. … It causes my back to arch, which causes my back, legs and arms to spasm as well. So it's basically a full-body spasm. I can't move, and it can sometimes last up to a few hours.”

“If I'm lucky and someone is nearby, they can bring me a warm compress, I apply it and put pressure on it, which can help relieve the pain,” adds Axelrod. “Sometimes it happens when I'm alone and I can't get up, I can't move, I just have to lie there. »

He describes the pain as “a charley horse times 100. Sometimes you can barely breathe.” And the mental load is also overwhelming.

“(You think), 'Oh no, oh no, oh God, please don't let this happen,'” Axelrod says. “It’s a moment of panic. It's not a pleasant experience to have. But I have definitely found that trying to stay calm and breathe deeply during this time has a positive effect. »

These types of episodes are more common in patients whose symptoms are uncontrolled, Piquet says. Axelrod adds that he's more likely to experience them when he's dealing with other stressors in his life. At a previous job, he had them several times a week.

What did Cline Dion say about her recovery?

According to Piquet, Dion has made “significant progress” in managing her symptoms since filming the documentary. Dion explained in the film that her treatment includes physical therapy, intravenous immunoglobulin (which helps treat the autoimmune aspect of stiff person syndrome) and muscle relaxants.

She said she can't wait to get back on stage soon, although she doesn't have a specific date yet. Dion said it's possible that when she returns, she'll have to cancel shows to prioritize her health, but she's always keeping a positive attitude.

“I have to trust myself. I have to trust my team. I have to trust my voice. I've been through some tough things, but we all do,” she told Hoda. “But a lot of joy too. I'm about to experience a lot of happiness.”