My heart will go on

Millions witnessed Celine Dion’s stirring rendition of Édith Piaf’s ‘Hymn to Love’ from the rain soaked shoulders of the Eiffel Tower during the opening ceremony of the Olympic Games in Paris this summer.

Piaf’s composition was a response to loss and hurt making it a poignant choice for the Canadian diva who is battling with Stiff Person Syndrome, a rare and painful neurological disorder.

SPS is often characterised by debilitating muscle spasms. Dion talks of crushing rib pain on a par with broken bones and throat spasms that resemble being strangled.

“It’s like someone is pushing your larynx, but it can also be in the abdominal area, in the spine, in the ribs and cramps in your hands where you cannot unlock them.”

The film I Am: Celine Dion, which chronicles the singer’s extraordinary career and her recent health struggles, is reported to be Amazon’s most popular documentary ever.

Dion told French Vogue that despite feelings of depression she did not want to give in to her condition.

“At the beginning I would ask myself, why me? Life doesn’t give you any answers. You just have to live it. I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over. I stay at home, listen to my songs, stand in front of my mirror and sing to myself.

“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. I have this strength within me. I know that nothing is going to stop me.”

What is SPS?

Stiff Person Syndrome (SPS) is a rare neurological disorder causing severe muscle stiffness and spasms, mostly in the trunk and limbs. Believed to be autoimmune, it leads to difficulties in movement and daily activities. Treatment includes medications and physical therapy to manage symptoms and improve quality of life.

Moving People

When assisting someone with mobility issues, it’s important to stay safe. Here are some hints and tips.

Helping someone walk

Stand on the person’s weaker side and hold their hand. If falling is a risk, make sure they use a walking aid or stick which should be on their stronger side.

If they use a frame, stand on their weaker side with one hand on their back and the other steadying the frame.

Standing from a chair

Stand at the side and help the person push up from the arm rest. Ask them to lean forward and move to the front of the chair. Place their feet apart, one foot slightly forward. Have them lean forward so their head is over their toes. Use a rocking motion to help them stand on request.

Sitting down in a chair

Ask them to use the armrests and ensure they feel the seat with the backs of their legs before sitting. Have them lower slowly and stick their bottom out to sit back properly.

Helping someone into a car

Position the person with the back of their legs against the car seat. Protecting their head, pivot them into the car, assisting with their legs one at a time.

Helping someone out of a car

Reverse the process: legs out first, then stand. Protect their head and guide them out by placing a hand on their lower back.

Source: NHS. Supporting People with Mobility