Celine Dion Describes Singing With Stiff-Person Syndrome

Celine Dion said trying to sing with Stiff Person Syndrome was like trying to sing while “somebody is strangling you,” in a preview of her upcoming interview with Today’s Hoda Kotb.

“It’s like somebody is pushing your larynx, pharynx this way,” Dion continued, pressing her hand to her throat. Dion proceeded to speak a little with her hand still on her throat, her voice sounding weak and airy. “It’s like you’re talking like that, and you cannot go higher or lower,” she said.

The upcoming primetime special will mark Dion’s first broadcast interview since she was diagnosed with SPS in 2022. The rare neurological condition — which has kept Dion from performing over the past several years — can cause stiffness in the body and limbs, as well as debilitating spasms.

In the new interview clip, Dion said she has experienced spasms in her throat, abdomen, spine, and ribs, adding that one was so “severe” it left her with a broken rib. She also said that sometimes her limbs will essentially freeze up, like if she’s cooking, and her hands will get in a position “where you cannot unlock them.”  

Dion’s full interview with Kotb will air next Tuesday, June 11, at 10 p.m. ET on NBC. 

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While Dion’s SPS diagnosis has kept her from performing, she has started to return to the public eye this year. In January, Prime Video announced they were prepping a new documentary, I Am: Celine Dion (set to premiere June 25), and then she appeared at the the 2024 Grammy Awards to present Album of the Year. She also sat for an interview with Vogue France, where she offered some insight into her current health status. 

“I haven’t beat the disease, as it’s still within me and always will be. I hope that we’ll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it,” she said, “So that’s me, now with stiff-person syndrome. Five days a week I undergo athletic, physical and vocal therapy. I work on my toes, my knees, my calves, my fingers, my singing, my voice … I have to learn to live with it now and stop questioning myself.”

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