Celine Dion's doctor speechless at star's 'vulnerability' in crisis scene
Celine Dion's doctor Dr Amanda Piquet has told Yahoo UK that the singer's "vulnerability" in the I Am: Celine Dion crisis scene was "beyond words".
The My Heart Will Go On singer, 56, has been diagnosed with stiff person syndrome (SPS), a rare neurological condition that causes muscle stiffness and episodic muscle spasms. Dr Piquet and her team have been treating Dion for two years now. She is the director of the autoimmune neurology programme at the University of Colorado Anschutz Medical Campus, where Dion has pledged $2m (£1.6m) to advance autoimmune neurologic disorders research.
Speaking exclusively to Yahoo UK, Dr Piquet shared her admiration for the singing legend sharing the footage in the Prime Video film. "It just makes the disease so incredibly real to people. A lot of times we say a picture is worth 1,000 words but a video of someone being so vulnerable and in the worst moments is beyond words," she said. "I was there for the premiere last week and people were shocked. It was incredible how vulnerable she was in that situation and filmed that."
At that I Am: Celine Dion screening in New York City, Dion credited Dr Piquet for "replacing her fear with hope". The doctor said of the moment: "Oh my God, it was beautiful. It was just amazing to hear that and now I feel like it's become almost a tagline here at the university."
She added: "I've been working with Celine and her and her team have been very, very happy with the progress that she's made and so it was a little serendipitous."
I Am: Celine Dion crisis scene
It's clear the crisis footage has had a huge impact. The music legend has been praised for her bravery in sharing this moment with the world after Dion didn't want the crisis cut from I Am: Celine Dion. "I'm already hearing from patients, that was incredible to them," Dr Piquet said.
"I've had patients ask me, 'Have you ever seen anything like this before?' And yes, we see this with the disease and with the documentary airing, it's been less than 24 hours, and I've already had patients reach out to me to say, 'Oh my God, I can't believe'. They understand that moment with her and they could feel that moment with her and it's hard to put into words."
Although the word "seizure" is used by one of the medics during the moment, Dr Piquet lifted the lid on what is actually happening while Dion is having a crisis. She said: "I know at one point in the film, they use the word seizure but it's not a seizure. This is unique to stiff person syndrome where your nervous system becomes completely overwhelmed and basically shuts down."
She further explained: "It often starts with a trigger that we can see like the muscle cramps and spasms. I believe in the video it started in her foot. Because of that increased stress, anxiety and the overwhelming of the nervous system, she had a muscle spasm that involved her entire body.
"Her body was locking up on her and we call that a person's syndrome crisis and it's different from a seizure where a seizure, you lose that consciousness, you have electrographic changes in the brain. We're not seeing the same thing here.
"We're just seeing a complete overwhelming of the nervous system where you can't actually coordinate movements because everything's just kind of been frozen."
Celine Dion 'working incredibly hard to get back on stage'
Also in I Am: Celine Dion, Dion breaks down in tears after demonstrating her struggle to sing. However, the musician vowed never to give up at the end of the documentary film saying: "If I can't run, I'll walk, and if I can't walk, I'll crawl but I won’t stop. I won’t stop."
Dr Piquet echoed this as she said Dion was "determined" and "working incredibly hard" to get back on stage. "I can tell you like many of my patients with the stiff person's syndrome, she is working incredibly hard," she said. "She is determined. She is working incredibly hard to get back on that stage."
She added: "She is an incredible inspiration to her fans and her life is singing and I think that's very clear that's her identity in the documentary. And so being able to get back to what she loves to do, that's what she needs. That defines her."
Read more: Celine Dion
Celine Dion says her fear of stiff person syndrome has been ‘replaced with hope’(CNN, 2-min read)
Celine Dion breaks down in tears over lying to fans before sharing diagnosis
What is stiff person syndrome? Celine Dion opens up about living with the condition(Evening Standard, 5-min read)
Dr Piquet explained why stiff person syndrome affects singing. "When you sing there's a lot of chest expansions that goes into that," she said. "It's not uncommon to see the stiff person syndrome muscle spasms that occur in the chest, the back and the belly."
She said: "You can imagine if you are having stiffness and muscle spasms involving your chest and around the ribs, you can't bring in the air into those lungs and make that same kind of singing quality. So she's been struggling with a lot of spasms in the chest and that's been a big impact and then vocal cords themselves, that's all muscle movement in the throat and coordinating those muscle movements."
Celine Dion's $2m donation
Speaking with great enthusiasm, Dr Piquet celebrated the I Am: Celine Dion documentary as a big step forward in raising awareness about the condition. She said: "This documentary is gonna be huge just for the public to understand this disease. And the first step in learning more about rare disorders like SPS is understanding the disease better because when we recognise the disease, diagnose the disease sooner then we can treat patients better.
"And right now we have no FDA (US Food and Drug Administration) approved therapies for stiff person syndrome. The hope is, one day we would love a cure, but in the meantime we'd love to get some approved therapies as well to treat the disease better. I think awareness is step number one."
At the screening for I Am: Celine Dion, the singer announced a $2m donation to University of Colorado Anschutz Medical Campus to create the Celine Dion Foundation Endowed Chair in Autoimmune Neurology. This will advance autoimmune neurologic disorders research, including stiff person syndrome, and Dr Piquet had the "incredible honour" to be named the inaugural chair holder.
She said: "I had the incredible honour being awarded the Celine Dion Foundation Endowed Chair in Autoimmune Neurology. We're gonna continue to work together with her medical treatments. But this is going to expand the work we can do clinically as well as our research at the University of Colorado."
She added: "It's hard to put into words but it was probably one of the most amazing moments in my career."
Dr Piquet said the donation would have a huge impact on the neurology programme. She said: "Oh my God, it's huge. So number one awareness, right?
"People knowing that there's value in what we're doing here at the University of Colorado is going to bring in more patients and we learn directly from the patients. I run the autoimmune neurologic disease registry here and we collect blood samples, we collect clinical information that is the foundation to launching these treatment trials."
I Am: Celine Dion is streaming on Prime Video.
