Share Celine Dion’s fight

The documentary on Celine Dion, released Tuesday on Prime Video, particularly touched a Shawinigan woman suffering from the same illness as the singer. She also suffers from stiff person syndrome, which affects one in a million people and has completely turned her life upside down, to which she adapts day after day.

Sylvie Samson spends a large part of her days in an armchair in the living room, near the window and the television. She’s been forced to do so ever since she was diagnosed with stiff person syndrome a little over a year ago.

Since then, she has lived on hope and resilience. Accepting the illness is not easy for her who has been active all her life and who is now forced to rest. One thing that hasn’t changed is his optimism, his way of not feeling sorry for himself and of savoring the small victories.

She has been experiencing it more and more since she was entitled to a new treatment that she started last April. It was after five weeks of treatment that she began to see the benefits. That’s when I started to be able to walk. When I say walk, I walk like I’m still drunk, but I walk, exclaims Ms. Samson. In the house, she can now leave aside the cane that was essential to her a few months earlier.

She must always fight and draw on her often meager reserve of energy to accomplish tasks that seem simple. Taking a shower, going up and down the stairs, and cooking are examples of activities that often require a moment of rest to recharge during the day. I work in segments because the energy is not always there.

Due to muscle spasms, she admits to causing damage. Like this morning, I made myself a coffee, then the cup was on the floor with the coffee. These are things that you have to teach me to accept because we would always be frustrated, you knowshe says.

A shared pain, a fight that will not end

Installed in her armchair, Sylvie Samson watches the documentary attentively I am : Celine Dion. It is with difficulty that she watches the singer she loves being struck down by illness.

I say to myself, will the disease cause it to rise in my body? […] That’s what’s unfortunate, I don’t know where it’s going to lead me.

Looking at the journey, she recognizes Celine Dion’s strength.

I think I’m the Céline Dion of Mauricie. Me too, I don’t want to stop, she said in tears, overwhelmed by emotion. She too is strong in the face of difficulties. Knowing that she will perhaps never recover, she wants more than anything to regain quality of life, her autonomy.

I’m alive. I am still alive. Then I have to continue to pursue this fight. I have no choice.”,”text”:”I’m going to do like her. I won’t give up. Then I’ll say like she said, I’m alive. I am still alive. Then I have to continue to pursue this fight. I have no choice.”}}”>I’m going to do like her. I won’t let go. Then I’ll say like she said, I’m alive. I am still alive. Then I have to continue to pursue this fight. I do not have a choice.

Sylvie Samson will soon find herself surrounded by experts in the field. His file will be transferred to the CHUM, to a neurologist specialized in his case. She will continue her treatments, while hoping for further progress.