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 Stiffy 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 director of the autoimmune neurology program at the University of Colorado Anschutz Medical Campus, where Dion has pledged $2 million (£1.6 million) to advance research into autoimmune neurological disorders.
Speaking exclusively to Yahoo UK, Dr Piquet shared her admiration for the singing legend who shared the footage in the Prime Video film. “It just makes the disease so incredibly real for people. We often say a picture is worth a thousand words, but a video of someone so vulnerable and at their worst moments is indescribable,” she said. “I was at the premiere last week and people were shocked. It was unbelievable how vulnerable she was in that situation and I filmed that.”
At the screening of I Am: Celine Dion in New York City, Dion credited Dr. Piquet for “replacing her fear with hope”. The doctor said of that moment, “Oh my God, it was beautiful. It was just amazing to hear that and now I feel like it’s almost become a catchphrase here at the university.”
She added: “I’ve been working with Celine and she and her team have been really happy with the progress she’s made and so it was a bit of a coincidence.”
I Am: Celine Dion crisis scene
It is clear that the crisis images have had an enormous impact. The music legend has been praised for her courage in sharing the moment with the world after Dion didn’t want the crisis edited out of I Am: Celine Dion. “I’m already hearing from patients that that was incredible for them,” said Dr. Piquet.
“I’ve had patients ask me, ‘Have you ever seen something like this before?’ And yes, we are seeing this with the disease and with the broadcast of the documentary, it has not even been 24 hours, and I have already had patients contacting me to say, ‘Oh my God, I can’t believe it ‘ 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 currently being used by one of the physicians, Dr. Piquet admits what actually happens while Dion is going through a crisis. She said: “I know they use the word seizure at one point in the movie, 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, such as muscle cramps and spasms. I believe in the video it started in her foot. Because of that increased stress, anxiety, and nervous system overwhelm, she had a muscle spasm involving her entire body.
“Her body locked her up and we call that a person syndrome crisis and it is different from a seizure where in a seizure you lose consciousness and experience electrographic changes in the brain. We don’t see the same thing here.
“We just see a complete overwhelm of the nervous system, where you can’t really coordinate the movements because everything is just frozen.”
Celine Dion ‘working very hard to get back on stage’
Also in I Am: Celine Dion, Dion breaks down in tears after demonstrating her struggles with singing. However, the musician vowed never to give up at the end of the documentary, saying: “If I can’t run, I’ll walk, and if I can’t walk, I’ll crawl, but I won’t stop. “
Dr. Piquet echoed this as she said Dion was ‘determined’ and ‘worked incredibly hard’ to get back on stage. “I can tell you that, like many of my patients with stiff person syndrome, she works incredibly hard,” she said. “She’s determined. She’s working really hard to get back on that podium.”
She added: “She’s 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 go back to what she loves to do, that’s what she needs. It defines her.”
Read more: Celine Dion
Dr. Piquet explained why stiff person syndrome affects singing. “When you sing, there’s a lot of breast expansion involved,” she said. “It is not uncommon to see stiff person syndrome muscle spasms occurring in the chest, back and abdomen.”
She said: “You can imagine that if you have stiffness and muscle spasms in the chest and around the ribs, you can’t get the air into those lungs and create the same kind of singing quality. So she has had a lot of trouble with spasms in the chest and that has had a big impact, and then the vocal cords themselves, which are all muscle movements in the throat and coordinating those muscle movements.”
Celine Dion’s $2 Million Donation
Dr Piquet spoke with great enthusiasm and hailed the documentary I Am: Celine Dion as a huge step forward in raising awareness of the condition. She said: “This documentary is going to be huge, just to help the public understand this disease. And the first step in learning more about rare conditions like SPS is to understand the disease better, because if we recognise the disease, we can diagnose the disease earlier than 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 that one day we would like to have a cure, but in the meantime we would also like to see some approved therapies want to get to treat the disease better. I think awareness is step number one.”
During the screening of I Am: Celine Dion, the singer announced a $2 million donation to the University of Colorado Anschutz Medical Campus to create the Celine Dion Foundation Endowed Chair in Autoimmune Neurology. This will advance research into autoimmune neurological disorders, including Stiff Person Syndrome, and Dr Piquet had the “incredible honor” to be appointed as the inaugural chair holder.
She said: “I had the incredible honor of being awarded the Celine Dion Foundation Endowed Chair in Autoimmune Neurology. We continue to work with her medical treatments. But this will 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 of my career.”
Dr. Piquet said the donation would have a huge impact on the neurology program. She said: “Oh my God, it’s huge. So number one awareness, right?
“People who know that what we do here at the University of Colorado has value will bring in more patients and we learn directly from the patients. I manage the autoimmune neurological disease registry here and we collect blood samples, we collect clinical information that forms the basis for launching these treatment trials.”
I Am: Celine Dion is streaming on Prime Video.