Celine Dion has revealed her twin sons Nelson and Eddy, 13, learned to use ‘panic buttons’ during ‘crisis’ drills amid her struggle with stiff person syndrome.
The singer shared her twins, as well as her elder son René-Charles, 23, with her late husband and manager René Angélil, who died in 2016.
When she suffers an episode, she experiences searing physical agony and her body goes rigid, to the point she may need assistance from her sons.
To ensure the boys are prepared, Celine and her physical therapist rehearse a ‘crisis’ with Nelson and Eddy every couple of months, she told People.
Celine Dion has revealed her twin sons Nelson and Eddy, 13, learned to use ‘panic buttons’ during ‘crisis’ drills; they are pictured with Celine’s eldest son Rene-Charles, 23
She disclosed that ‘we have panic buttons in the house and they know how to put me on my side’ if she becomes unable to move.
‘They saw a crisis – we explained it, we played it frame by frame. When I make a sound, or when I don’t make a sound, and what can they do because they’re 13 years old. They can help me out even if I don’t communicate verbally because I can’t produce a sound,’ she said.
‘The idea of telling them and showing them, it was not to frighten them. It is for them to know: “I’m your mom and it’s my responsibility. You’re old enough to understand I might need your help,”‘ Celine added.
‘They’re so amazing because I would say 15 minutes or so every night, they come and they say: “Mom,” and I say: “Yes?” [They say]: “It’s just because it’s been a little longer than you usually take when you clean up at night before bedtime. We just want to make sure you’re fine.”‘
Reflecting on the way her twins assist her in managing her condition, she said: ‘This is our lives now: We care for each other, and they’re so helpful.’
When she began experiencing the health problems that turned out to be stiff person syndrome, Celine was racked with worry for her children.
She noted that they would ‘have something to eat tonight and tomorrow, but what if I don’t know what’s going on with me, and what if I die? What if I don’t wake up?’
Celine pointed out: ‘They already lost their dad. What are they thinking? Are they scared to ask me? Should I bring it up?’
When she suffers an episode, she experiences searing physical agony and her body goes rigid, to the point she may need assistance from her sons
Once she received an official diagnosis, she informed her children of the situation and reassured them that she would survive
Once she received an official diagnosis, she informed her children of the situation and reassured them that she would survive.
‘I let them know, okay, you lost your dad, [but] mom has a condition, and it’s different. I’m not going to die,’ she said. ‘It’s not something that’s going to go away, [but] it’s something that I’m going to learn to live with.’
Celine’s sons can be seen loyally supporting her in a new trailer for her documentary, which premieres on Amazon Prime Video on June 21.
In the heartbreaking video, Celine is seen desperately trying to save her voice, saying she will do anything to sing again, as she cries over her health issues.
‘My voice is the conductor of my life,’ she says in the new trailer. ‘When your voice brings you joy, you’re the best of yourself.’
Despite the tough times, it appears her children bring her as the documentary shares heartwarming glimpses of times at home spent with her three sons.
In one scene, she is heard saying ‘I love you’ to her son in French, before sharing a sweet embrace.
Celine’s sons can be seen loyally supporting her in a new trailer for her documentary, which premieres on Amazon Prime Video on June 21
When she began experiencing the health problems that turned out to be stiff person syndrome, Celine was racked with worry for her children
The first trailer for the new Celine Dion documentary I Am: Celine Dion dropped on Thursday morning, offering a heartbreaking glimpse inside the singer’s brutal battle with stiff person syndrome.
As the music star – who attended a Rolling Stones concert recently – speaks in the trailer, another voice is heard repeating Celine’s name over and over while a 911 operator asks, ‘What’s your emergency?’
It was not made clear why 911 was called, but it was likely during Dion’s struggle with stiff person syndrome.
Stiff-person syndrome (SPS), also known as stiff-man syndrome, is a rare neurological disorder that causes progressive muscle stiffness and spasms.
The spasms can be painful and come and go, and they can worsen over time. The stiffness usually affects the torso muscles, but can also affect the arms and legs.
Celine revealed that she had been diagnosed with the degenerative disease in December 2022.
The trailer offers viewers just a tease of the upcoming documentary.
In it, the Canadian admits she was reluctant to share too much about her recent struggles, however she does reveal how limited she is during her workouts.
Despite the tough times, it appears her children bring her as the documentary shares heartwarming glimpses of times at home spent with her three sons
They were seen playing video games in their lavish home
Celine pictured with Rolling Stones lead singer Mick Jagger and her sons earlier this year
As Celine speaks another voice repeats Celine’s name over and over while a 911 operator asks, ‘What’s your emergency?’
Stiff-person syndrome (SPS), also known as stiff-man syndrome, is a rare neurological disorder that causes progressive muscle stiffness and spasms
Celine opened up about her health battle in a rare interview with Vogue France in April. Asked how she is doing, she replied: ‘I’m well, but it’s a lot of work. I’m taking it one day at a time’ (pictured in 2015)
By the time she was diagnosed, she had already postponed or canceled several concerts and live appearances.
‘It’s not hard to do a show, you know. It’s hard to cancel a show,’ she says in the trailer.
‘I’m working hard every day, but I have to admit it’s been a struggle. I miss it so much. The people. I miss them.’
Celine is bringing her trademark determination to fight her disease. ‘If I can’t run, I’ll walk,’ she declares. ‘If I can’t walk, I’ll crawl.’
‘It’s not an expansive look at the life and times of the iconic pop singer, instead capturing a snapshot of a pivotal time in her career.
‘The documentary spans about a year and chronicles Dion’s battle with Stiff Person Syndrome, a rare neurological disorder that affects the brain and the spinal cord.
‘In the case of Dion, the illness halted her livelihood and ability to perform,’ Variety reported.
I Am: Celine Dion hits Amazon Prime on June 25.
Celine opened up about her health battle in a rare interview with Vogue France in April.
Asked how she is doing, she replied: ‘I’m well, but it’s a lot of work. I’m taking it one day at a time.’
In the emotional video, Celine is seen desperately trying to save her voice, saying she will do anything to sing again, as she breaks down in tears over her health issues
Explaining how she manages the condition she explained: ‘Five days a week I undergo athletic, physical and vocal therapy. I have to learn to live with it now and stop questioning myself.
‘At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault? Life doesn’t give you any answers. You just have to live it!’
Celine added: ‘I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!’
Celine has also revealed whether she will ever take to the stage to perform again.
In her candid response she replied: ‘I can’t answer that…. Because for four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready.
‘As things stand, I can’t stand here and say to you: ‘Yes, in four months.’ I don’t know… My body will tell me.’