2024-02-10 06:00:00
In France, a handful of people suffer from “stiff man syndrome”, like singer Céline Dion, who now only makes rare public appearances. Symptoms, treatment, social isolation… A 48-year-old Frenchman tells BFMTV.com regarding his daily life with this rare and little-known autoimmune disease.
Like Celine Dion, filmed singing for the first time in months backstage at the Grammy Awards on Sunday, February 4, Ruben Falkowicz’s life was punctuated by music before he was diagnosed with syndrome. stiff man in 2017. In this pianist, now 48 years old, the first symptoms appeared a few months earlier, following a serious climbing accident.
When he started climbing once more three months later, Ruben Falkowicz first noticed a strange lack of flexibility in his legs, in addition to “back pain” which had become chronic. This is where the famous muscular stiffness symptomatic of the disease appears: very quickly, he realizes that he is no longer able to bend his back and that he is regularly overcome by “terrible and uncontrollable spasms” which can resemble epileptic seizures.
“I was so stiff I walked like a scarecrow, like Robocop,” he remembers. “And when I made sure it wasn’t visible it was even worse.”
Spasms also described by Céline Dion at the time of the public announcement of her illness, in December 2022. “They affect my everyday life on several levels”, recounted with emotion the singer, forced to cancel her tour. “I sometimes have a lot of difficulty walking and I can’t always use my vocal cords to sing as I would like.”
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“Like a whole body cramp”
At the start of the illness, Ruben Falkowicz says he was no longer able to speak or walk. “Sometimes in the middle of a street I absolutely needed to lie on my back on the ground, the pain was so unbearable,” assures this Frenchman, now based in Brussels.
“The body tenses like a bow. It’s like a cramp of the whole body which gets worse, the whole body becomes nothing more than a horrible cramp”, attempts to describe this former professional musician, now a music teacher. piano. “It was hell, truly, and it still is a little bit.”
At that time, it was “impossible” for Ruben Falkowicz to continue giving lessons: “I mightn’t even talk on the phone anymore. I sometimes screamed with my back arching, a bit like the little girl in L ‘Exorcist”.
Luckily, the diagnosis is made fairly quickly, notably thanks to a blood test. The forty-year-old then began treatment to relieve his symptoms, and stopped working for three years. But to date, there is no treatment for the causes of this autoimmune pathology.
“I think I learned to live with it (…). It was a long road to gradually resume a semblance of normal life,” says Ruben Falkowicz, who gives piano lessons once more but no longer plans to to give concerts.
A “capricious” and “difficult to describe” syndrome
The forty-year-old describes “an extremely capricious syndrome” which can take many different forms depending on the person. “There are some for whom only the leg is affected. It remains tense and they can no longer walk, while others have a much more serious variant which also affects the internal organs”, explains the pianist, diagnosed with type diabetes. 1 in parallel.
For his part, Ruben Falkowicz explains that he can do almost everything normally, even if his intravertebral muscles have been permanently contracted for seven years.
“I can’t bend my back, it will never bend once more,” he assures. “My body is like a board and that’s why I can lose my balance.”
To get up from a sitting position, for example, he cannot use his abdominals but must push with the strength of his arms. “Like I have a pin running down my spine.”
“It’s very difficult to describe,” he says. “It multiplies by 100 everything we can feel and even a small interaction takes on extraordinary proportions…” This is the reason why “without realizing it”, Ruben Falkowicz developed phobias and can tend to isolate themselves from the rest of the world. A simple car horn can trigger muscle spasms for him.
“I live a bit of a recluse, my life has changed,” says this man. Like Céline Dion, who only makes sporadic appearances, like on Sunday February 4, when she took the stage at the Grammy Awards, wrapped in a large brown coat, partially hiding her body and her movements.
“It becomes insidious because somewhere everything is seen through the prism of pain,” explains Ruben Falkowicz. I translate everything I am going to do in relation to the illness and the pain it will cause. I get invited to parties, but I don’t go unless I really feel completely serene.”
Hope for a response from Céline Dion
The pianist does not hide the fact that daily life with a rare and invisible illness can be heavy. On the one hand, he wants it to go unnoticed but on the other, he can get annoyed when “people forget this thing that ruined (him’s) life.”
A certain number of doctors do not even know regarding this pathology which affects one person in a million, or only around thirty cases in France according to Professor Pierre-François Pradat, neurologist at the Pitié-Salpêtrière hospital in Paris. (APHP).
Ruben Falkowicz is delighted with Céline Dion’s speaking out, which gives visibility to the disease. The singer announced the upcoming release of a documentary in which she recounts her fight once morest the disease, “to raise awareness of this little-known disease and help people who share this diagnosis”. The Frenchman, for his part, wrote to the Canadian singer to offer her advice or a listening ear.
Esotericism, alternative therapies, magnetizer, personal development… The pianist says he “tried everything” to try to soothe his pain and phobias, before “stopping looking everywhere”. “By searching we become scattered,” confides this man, who says he has touched upon “the excesses of this kind of environment”. “We no longer know the difference between what works and what doesn’t.”
However, both Ruben Falkowicz and Professor Pierre-François Pradat want to re-establish a certain number of truths regarding the disease: although disabling, this pathology is not neurodegenerative and it does not directly endanger the lives of patients.
“It’s not as if I had a sword of Damocles hanging over my head. The disease evolves and at a certain point, we know what to expect,” explains Ruben Falkowicz, who is even doing a little more climbed and walked the Camino de Santiago last summer. “I try to stay alive,” confides the Brussels resident. “But it’s very complicated. My life is not exactly the way I wanted it to be.”
Jeanne Bulant Journalist BFMTV
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