Sunday, December 22, 2024

Heartbreaking footage of Celine Dion in 2008 emerges as Stiff-Person Syndrome took hold before tearful singer admits ‘I’m an apple tree and my branches are starting to fall’

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Celine Dion battled with the symptoms of the rare neurological condition Stiff-Person Syndrome during her 2008 world tour.

Heartbreaking footage has emerged of the singer, 56, revealing her first symptoms to medics during the Taking Chances tour.

Taken from her 2010 documentary Celine: Through the Eyes, the clip see Celine complaining of vocal ‘spasms’ and ‘cold like symptoms’ when she tried to sing her hits. 

Celine revealed this week that she secretly battled stiff person syndrome for 17 years before revealing it to the public, admitting that ‘lying’ to her fans was ‘too much’ for her to bear.

Celine Dion battled with the symptoms of Stiff-Person Syndrome during her 2008 world tour. Heartbreaking footage has emerged of the singer revealing her first symptoms to doctors 

Celine revealed this week that she secretly battled stiff person syndrome for 17 years before revealing it to the public, admitting that 'lying' to her fans was 'too much' for her to bear

Celine revealed this week that she secretly battled stiff person syndrome for 17 years before revealing it to the public, admitting that ‘lying’ to her fans was ‘too much’ for her to bear

A video from the tour sees Celine, then aged 40, talking to her doctor, explaining: ‘My main problem now is my neck, I cannot relax my neck so I cannot relax my vocal chords so I cannot vocal exercise well.’

Later she says: ‘My main problem is not that I can’t do the highs, I’m spasming, my eyebrows are spasming, my ears. I tell you I’m gonna flip soon, I’m telling you’.

In a meeting with her team after one gig, she reveals how she was feeling out of breath just talking to her fans, and was worried about making it through the gruelling tour.

‘To make a long story short, by the time I went to the meet and greet my breathing was too rapid, I was spasmed up too much, I couldn’t finish a phrase,’ Celine says.

‘The show has not started yet, I was saying hello to people and I couldn’t breathe, I went on with the show.’

‘And when I sang “I drove all night for the first time” it was [out of tune] “I drove all night” right there. Yesterday night after doing everything I was spitting out mucus.’

Later while in a huddle backstage with her dancers, Celine who is visibly struggling,  tells them: ‘I don’t have a voice.’

To gasps from her dancers, the emotional star tells them ‘it’s weird, it’s closing so I’m really having a hard time right now.’

Taken from her 2010 documentary Celine: Through the Eyes, the clips see Celine complaining of vocal 'spasms' and 'cold like symptoms' when she tried to sing her hits

Taken from her 2010 documentary Celine: Through the Eyes, the clips see Celine complaining of vocal ‘spasms’ and ‘cold like symptoms’ when she tried to sing her hits

A video from the tour sees Celine talking to her doctor, explaining: 'My main problem now is my neck, I cannot relax my neck so I cannot relax my vocal chords so I cannot vocal exercise'

A video from the tour sees Celine talking to her doctor, explaining: ‘My main problem now is my neck, I cannot relax my neck so I cannot relax my vocal chords so I cannot vocal exercise’

In a meeting with her team after one gig, she reveals how she was feeling out of breath just talking to her fans, and was worried about making it through the gruelling tour

In a meeting with her team after one gig, she reveals how she was feeling out of breath just talking to her fans, and was worried about making it through the gruelling tour

Another video taken from the star’s upcoming documentary sees the singer becoming emotional as she describes her despair about how her diagnosis is affecting both her career and her relationship with her fans.   

‘I feel like I’m an apple tree and my branches are starting to fall, sometimes those branches get crooked and those branches are starting to produce a little less apples,’ she tells the camera.

‘But there’s still as many people in line, I don’t want them to wait in line if I don’t have apples for them.’

Celine has not performed in public since March 2020 and has remained out of sight raising her three sons, but she had also been filming a new Amazon Prime documentary about her health battle titled simply ‘I Am Celine Dion.’ 

Speaking on a NBC News Special with Hoda Kobt this week, Celine explained how it was during the 2008 tour that she first starting noticing something was wrong.  

Another video is taken from the star's new documentary and sees the singer describing her despair about how her diagnosis is affecting her career and her relationship with her fans

Another video is taken from the star’s new documentary and sees the singer describing her despair about how her diagnosis is affecting her career and her relationship with her fans

‘I was on the Taking Chances world tour,’ Celine said. ‘I was in Germany and I was fine and I had breakfast and then my voice started to go high…then it felt like I could not control it…I could not control anything.’

‘I had to take a plane to go to the next city. I arrived at the dressing room and I started to do my vocal exercises. Then as I went up …and then I could not go back up.’

Celine thought then ‘if you go up you better take a good look because you are going to go up just one time tonight…but I have 23, 25 songs to sing.’

‘So what happened?’ Hoda said.

‘I had to find a path,’ Celine said. ‘It was squeezed. So I said I was just going to do two songs. Normally I sing for almost an hour or 45 minutes for sound check.’

Hoda asked her what was happening to her voice when she tried to sing.

Speaking on a NBC News Special with Hoda Kobt this week, Celine explained how it was during the 2008 tour that she first starting noticing something was wrong

Speaking on a NBC News Special with Hoda Kobt this week, Celine explained how it was during the 2008 tour that she first starting noticing something was wrong 

'I was on the Taking Chances world tour,' Celine said. 'I was in Germany and I was fine and I had breakfast and then my voice started to go high¿then it felt like I could not control it'

‘I was on the Taking Chances world tour,’ Celine said. ‘I was in Germany and I was fine and I had breakfast and then my voice started to go high…then it felt like I could not control it’

STIFF-PERSON SYNDROME: INCURABLE NEUROLOGICAL CONDITION THAT LOCKS THE BODY

Stiff person syndrome is an extremely rare disorder that makes the muscles in the torso and limbs alternate between spasming and being rigid.

Estimates suggest it affects around 70 people in the UK and 330 in the US and remains little understood. Around twice as many women as men are hit with it.

The progressive disease sees patients’ stiffness increase over time and can lead to them needing to use a wheelchair. 

There tend to be three types of the syndrome:

  • Classical person man syndrome: When rigidity and spasms are around the back and stomach, and occasionally thighs and neck. It can cause back curvature over time.
  • Stiff limb syndrome: Spasms especially affect the legs and feet, occasionally causing them to become fixed in place. Hands can also be affected.
  • Jerking stiff person syndrome: The rarest, most aggressive form, which includes symptoms from both the others, and also affects the head and eyes.

Experts do not know exactly what is behind the disease. 

But they believe it may be caused by an autoimmune reaction, when the body attacks its own nerve cells that control muscle movement.

Around 40 per cent of sufferers also have type 1 diabetes, another autoimmune disease. Type 1 diabetes is particularly associated with classical person syndrome.

Other autoimmune conditions like vitiligo, which causes white patches of skin, and pernicious anemia are likewise associated with it.

It is also more common in people with breast, lung, kidney, thyroid or colon cancer, as well as lymphomas, but researchers do not yet know why. 

In stiff person syndrome, the immune system attacks a protein that helps make gamma-aminobutyric acid (GABA), which regulate motor neurons — the nerves that control movement.

Low levels of GABA cause the neurons to continuously fire when they are not supposed to, resulting in the spasms and rigidity. 

What are its symptoms? 

The main symptoms caused by stiff person syndrome are spasms and rigidity of the torso and limbs.

Spasms can be triggered by loud noises, with the condition also causing heightened sensitivity to sound.

Touch and emotional distress can also be felt more intensely as a result of the condition.

The spasms can be so severe they cause people to fall over or lead to difficulty walking and other disability.

Stress and anxiety are also usually higher in those with the condition, particularly because of the unpredictability of spasms.

The lack of GABA — which regulates anxiety — in their system also affects mental health. 

‘It’s like somebody’s strangling you,’ Celine said. ‘It’s like someone is pushing your larynx right this way.’

Celine described that her voice clenched up. Celine said at first she thought it was because she had been working too hard.

‘But that thing is it was different,’ Celine said. ‘It was more spasmodic than something cold.’

Celine, who won the Eurovision contest at the age of 20, and sold more than 200 million records, talked about starting out in the music business.

‘When I started my career, I was on top of the ladder,’ Celine said. ‘My head was in the cloud. I was looking to the sunset and the stars and the rainbows and looking down.’

She shared that in that 2008 tour she started losing control of her instruments.

‘I was very, very scared,’ Celine said. ‘Just before I went on stage I asked my sound man ”I don’t know if I can do the show. I don’t know what’s happening.” And then you panic and the more you panic, the more you spasm.’

The sound manager didn’t know what to do.

‘It was black out and I went on stage and I started to sound more nasal,’ Celine said.

Hoda said Celine’s voice continued to waver.

‘I was trying to compensate and find another way to have a voice,’ Celine said. ‘So we lowered the song a little bit with the keys.’

Celine said for her that was a smart thing to do and then she said she started to find a tunnel to make it tighter a little bit.

‘And project more nasal and hope,’ Celine said.

Hoda shared that sometimes when Celine’s voice wasn’t working properly she would pretend her microphone was broken and other nights she would rely on the audience to help her sing.

‘I was trying to survive,’ Celine said. ‘I let the people sing with me a lot.’

Celine said ‘I had to lie. We did not know what was going on. I did not take the time. I should have stopped. 

‘Take the time to figure it out. My husband as well was fighting for his own life.’ 

Five years after her first symptoms appeared her husband and manager Rene Angelil began suffering from cancer the second time. Hoda said that Celine put much of her life on hold to be with him.

‘I had to hide,’ Celine said. ‘I had to try to be a hero. I became a nurse. I became his supporter. I had to protect my kids. Practice my passion.’

‘Feeling my body leaving me. Holding on to my own dreams. But do I have dreams, what is going on, I can’t sing.’

Rene died in 2016 at the age of 59 and two days later Celine’s 73-year-old brother Daniel also died of cancer.

‘At that time, my brain, my personality, it was the show must go on,’ Celine said. ‘Regardless of your pain and your struggle.’

Celine said her symptoms started to get worse and she could feel her body get more stiff. She said every time she went to see a doctor she hoped he would be able to diagnose her and tell her what she had.

‘Tell me I’ve got something wrong because I’m going to have to make big decisions over here,’ Celine said.

Celine said she tried a lot of things.

‘Trying a lot of things when you don’t know what you have can kill you,’ Celine said.

Within weeks of her husband’s death she was back at Caesars Palace and even filled in with Hoda on the Today show that summer. She said her symptoms started to get worse and she even started blacking out.

‘I would lose it for two hours without knowing,’ Celine said. ‘Then you have a hard time to walk and you blank for two hours.’

Celine said she tried a lot of things to keep going. She shared that she started taking high doses of Diazepam, commonly known as Valium, to control her symptoms and relax her muscles.

Celine is shown celebrating her 1,000th show at Caesars Palace in Las Vegas in October 2016

Celine is shown celebrating her 1,000th show at Caesars Palace in Las Vegas in October 2016

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